For those who desire a simple progress report of where i was at at specific timelines without reading the whole blog, follow the links below.
And for everything in between…well, I don’t know how to start at the beginning without having to click ‘next page’ repeatedly; but, if desired, there are the categories on the right that should help some if you’re just looking for a specific timeline (e.g. the day of surgery and a few days after ).
PS - This post is sticky which means that it will always be on top and any new posts will appear below it..
2 years… wow..
I must say, for many reasons, not the least of which are my feet, these last two years have been extremely rough.
The blog has over 15,000 hits. Kind of crazy.
Oddly, 98% of the hits are from the US…I wonder why.
In looking back over some of my prior posts, I go into a lot of detail about which pieces of my foot hurt – of which could be well summarized in one ‘still in pain’ sentence. I wished to use the blog as a non-subjective timeline of issues for myself. And, I figured that in reading, it may help others who could then know that X or Y pain was ‘normal’.
That said, when reading it after the fact, at times, it simply reads as a morph of ongoing lines of a variety of pains. So, for anyone reading through some of those posts, fair warning.. :) Be prepared to skip several paragraphs and mentally replace them with ‘it still hurts’.
On the subject of ‘it still hurts’..where o where to begin?
As mentioned in a few comments and posts, despite it all, I would get the sliding osteotomy & tendon transfer done again. Not so keen on the fusion which to me, didn’t seem to do much but cause increased post-op pain..and the gastroc recession doesn’t appear to have done anything other than slightly malforming my calf while leaving it jellyriffic and seemingly incapable of regaining prior muscle. My soleus muscle has come back..but the gastroc..not so much.
At this point though..well..I think I’ve simply aged a Lot in the last 2 years. Or so it feels. Thus things like having a calf in shape…My priorities have shifted to just wanting to be mobile.
Anyway, I would get the osteotomy/tendon transfer again – but only if I had (as I had) gone through all possible conservative options…And reached the point (which I did) where i couldn’t walk unassisted. It is because of this last part that though I continue to have issues, my regret remains minimal..It’s a crappy injury/condition..a crappy surgery to recover from..an all around crappy situation to be in. But, when you reach the point where you can’t walk unassisted without surgery, it stinks with or without surgery…but surgery offers the chance of improvement.
Pain-wise though, it continues to be Massively better than it was post-op. Miles better. Pieces still hurt here and there most definitely. And some days I limp more than others…But compared to the post-op nerve issues..it’s a world of difference.
A few things that make this tough though is my other foot and structural pain.
My knees – particularly the one on the surgery side have been having more and more issues. This then moved to what felt to be hip pain on the same side…this regular pinch that radiated out and was definitely not pleasant, but in the greater scheme of things, meh. That is, until it surged, shooting from my lower back, down the back of my butt/upper thigh..At which point I discovered that this pinch was in fact my sciatic nerve upset – and having it really upset..Well..all of a sudden, my gait that at times is almost normal returned to intensely restricted. Bending down to sit, unbending to stand, any sudden movement, walking, sitting, lying, standing, heck, just about any movement period.Awful. Meanwhile, I’ve been afraid to do any core work or lifting at the gym lest I upset it further..Which means that as of now, I haven’t been to the gym in about a month and have only gotten occasional, limited exercise on my bike trainer at home.
As a result of this, I am again signed up to go see my pain PT person. (Though she’s booked for 3 weeks before I can get in)..This of course is not what I hoped to be doing 2years post-op.
In the meantime, it is settling – to the point that I’ve actually considered doing some light crunches. So YAY for that.
…Of course I can’t say that this is From my foot..I do have a prior vertebrae compression that has caused lingering issues for years…but, I think the odds are that were I walking regularly, with a normal gait…
So, one ongoing issues seems to be the fact that the hip bone’s connected to the knee bone..
Another is my other foot. It has begun to roll inward which, as per my last surgeon appointment, as it has midfoot damage, it seems there is little that can be done to circumvent its descent. Meanwhile, I have the ongoing issue of the toe i dislocated which then turned into super pain at the phalangeal-metatarsal joint..(Which, as per my last appointment, apparently would need a metatarsal osteotomy, not just the previously stated tendon transfer..For now, I’ve been going AMA and getting repeat steroid shots)
As mentioned before, this (left) foot’s pain seemed to help my PTTD (right) foot’s recovery as my body could only register one super pain at a time – thus allowing the PTTD foot to begin to be used as the normal one..
However, over time, this foot’s pain has made it such that any walking I might otherwise now be capable of, continues to be very limited.
Because of this, it is hard to tell how well my PTTD foot really is as prior treadmill speed/incline progress has been all but eliminated.. But I have had days here and there where I’ve been able to do short (~1mi?) dog adventures..For which, my PTTD foot was being a champ.
Of late though, …well…when this began, I had this feeling like there was a cheese grater under my skin (along the PTT path). And, at first, it just acted up here and there after an extended walk..but over time, with each step i took it was like the flesh under my skin was repeatedly scraping against said grater..
Unfortunately, along with the feeling of my non-surgery (left) ankle beginning to collapse, in the last few months, the grater has begun on it as well. But, for my right, it went away with surgery. I had a bajillion other pains, but that one *completely* disappeared..until now.
The last month or so, the cheese grater has returned to the surgery foot. It seems most active on those days when I am able to walk the mile – and far more exacerbated when that walk involves any inclines. And this, plus its presence on my left foot, has been a major emotional stab.
There are times when I just want to break down and cry..Times when I’m pissed..Times when I’m intensely depressed..And times when I think that I need to reassess my current response to pain..
I’ve become so worn out that it almost seems my pain tolerance is much, much lower than it ever was. Which in part means that when I feel pain, instead of pushing through/carrying on/etc..I take the other extreme of getting whiny and just wanting it to stop..Wanting to take a pill to avoid it..More and more letting it run my life..as I try to run from it.
Which, for me…I always used to have a high threshold. As a rule, I don’t give in to pain, I breathe through it and move on. Or rather, I used to.
So, the grater has reared its head again – and with it, I’ve begun getting this pouchy swelling just like I did when this began…It just stabbed me. And, though it could be that i’ve just noticed it lately, my PTTD foot has flattened some and pronated a bit post-op (-it was horseleg straight, so it still is undoubtedly more straight than it ever was in my entire pre-operative life…thus this piece is absolutely not an issue by itself, but something I noticed..)
Though it was the 2yr mark, I didn’t want to update the blog yet as I didn’t want to just update it with whiny misery and instead first wanted to see what the dr said. My thoughts were that it is still structurally fine, but what can I/should I do to stop the cheese grater and make it Stay fine…orthotic tilt? PT? wear a brace when walking for longer?
He took x-rays and said they look fine. (as expected). And that he wasn’t sure why the pain was there..He said my ankle was weak, but the whole thing was weak, not just the PTT..And that the bit of flattening/settling i’ve seen is normal.
He seemed a bit brief..and didn’t say anything about the swelling – but given the history of this foot, I guess i could see why not..Other than that, he agreed that getting a tilt in my orthotics would be good. And he said I could do PT – which as above, I’m doing anyway for my back, so that works.
I think in part though, I didn’t realize what I really wanted to ask until I left – I was trying to figure out how the cheese grater could be there – if it was even structurally possible for my ankle to roll again as given the sliding osteotomy that seemed so very impossible..But after a bit of thought, I realized – yes, it is possible..I can’t Google it as ‘failed PTTD’ since that pulls up other info…what I’m looking for is referred to as ‘undercorrection’. And it is why the other surgeon was quite set that I needed the lateral lengthening – because, in his opinion, the osteotomy wouldn’t be enough.
I’ve been trying to forget that last part..Because dear God I can’t fathom going through this again on the other foot, let alone a repeat on this one. But, I suppose the fact is that it is possible for the procedure to ‘fail’ by not having fixed it enough. (The same as a lengthening could overcorrect..)
All that said, the bits of grating aside, right now, it is doing well. So whatever I can do to keep it that way…orthotics, PT, even lifelong PT..whatever it needs to stay relatively happy, i’m all for it.
It has been a mighty long time since I posted a status update. As I said in a comment to John, that could mean things are going quite well, or quite poorly..and I’m very happy to say that overall, it indeed is the former.
Looking back at my last post, I have come a mighty long way. Far enough that several times while reading, I thought ‘oh yeah, i forgot about that’.
From around month 8 to month 14, there were tidbits of changes. Any change that happened, I grabbed onto as it brought hope. But, progress was slow at best; and overall, give or take a bit, I pretty much sat at another plateau.
It reached the point where I was pretty convinced that any decent changes would take a Very long time (perhaps years) to fully transpire. I accepted that though..I actually mostly reached a point of accepting where I was at as I could walk and the CRPS had settled. And without surgery…I vividly remember being unable to walk 20steps to the bathroom at night without the brace on..my ankle just collapsed and push it as i tried, my whole leg would have nothing to do with it. And, even the brace rapidly lost its efficacy.
So, I accepted it since my biggest fear was ending up worse. But no. I was better.
Then out of nowhere, around month 14-15, I could walk normally. 80% of the time, if i limped, it was slight, but typically, i walked with that ‘natural’, instinctual walk that i quite honestly was beginning to wonder if i had gone so long without that it was gone for good.
Unfortunately, this percent has drastically dropped since – but that is actually because of my other foot with the dislocated toe (which is getting closer and closer to my agreeing to surgery). The amazing/wonderful/relevant part of this is that – without added complaint, my surgery foot is continually taking the load from my other foot. And it is doing so without being up in arms.
It has its down moments..there are points of shooting nerve pain..the occasion where i can feel where the heel was cut..the lateral piece is still hypersensitive – but even that is at the level of an irritant when touched, not a ‘you touch it, i punch you’ level. At this very moment, the arch is throbbing. But it’s at most a 3…easy to ignore. And, as i know it will go away at some point, it’s even easier to ignore. It’s just part of my foot doing its thing.
I honestly don’t think i’ll ever be able to run again. That makes me sad, but i knew it going into it.
Every once in a while, i get the longing..but the second i imagine it, it’s no longer thought of as swimming on land, it’s this jarring, slamming..pain..so, overall, i don’t really long for it much any more :)
Because of my other foot, my outings continue to be extremely limited. I can no longer do any basic speed on the treadmill so i have no numbers to compare to the progress I made previously. But given how my PTTD foot feels, I have no doubt I could otherwise take the dogs out for at least two miles..and likely progressively increase that.
Even the thought of going for a (shorter) hike now sounds fully plausible.
So, a big wahoo for that. The ‘fully recovered’ fusion estimates I read are around 1.5yrs; but as I didn’t expect much beyond where I was at, the jump in progress that long after surgery was a great surprise.
Other than that, my right calf is still a wimpy peg. Even though it’s taking on the load from my other leg, it’s almost as if the gastroc is incapable of rebuilding muscle. – that is, except for along and below the gastroc scar where my leg bulges out oddly a bit.
that’s another one i’m wondering..would i really do it again?? did it really do anything that the osteotomy couldn’t have resolved on its own?
but…i’ll save those questions for my other foot should its time arrive.
..The fusion – which had been the bane for quite a long time has overall settled. It still has its moments, as does everything, but it no longer is demanding constant attention.
That said, one of the fusion screws is in at such an angle that the head of it peaks right at the bridge of my foot and is of course ‘padded’ by a few layers of skin. Thus it rubs up against a lot of shoes, and in general is often irritated. And, inevitably, the more irritated it gets, the more sensitive and a teeny bit swollen it can get – leading to it rubbing up against things yet more.
I am very reluctant to touch this foot with a scalpel ever again, but if it were to have to be,one thing i would definitely have done is get rid of that screw.
The heel screws though..I wouldn’t even know they were there if they didn’t show in an x-ray. I’m pretty happy about that.
One other thing that shows how far i’ve gone..reading the prior post about putting away the shower chair..there isn’t even a glimpse of a thought in my mind of needing a chair while in the shower. Nor any padding to stand on or any of it..it’s just a shower, the same as it ever was.
I do believe that’s all for now. Hopefully, one of these days, my other foot will be happy enough and I can begin to go on long wanderings again.
In the meantime, my PTTD foot quite possibly will need another surgery as a direct result of issues produced by this one..and i forever have to be wary of nerve activators..but..I can solidly say that I would do the osteotomy and tendon transfer again and though it has been a mighty long haul, i don’t regret it.
Time flies? Something like that.
Mostly though, at month 8 and 9, not much had changed. And after that, I still had a decent amount of pain, so I fell into the ‘if you don’t have anything good to say..’
Sooo..The timeline of changes since I last updated:
*I began doing things around the house without a cane. Very gimpy, but no cane.
*It seems most of my smaller muscles/tendons had atrophied significantly as most of my basic balance was gone. I believe I encouraged the atrophy by focusing so much (almost all) of my walking on the treadmill. The cushion and 100% flat surface were *so* much kinder than the harsh impact of a sidewalk or the sudden jolt of slightly uneven ground. But those unpredictable side-to-side moving steps, the contractions required to steady the foot…those keep the muscles in use. On a purely flat surface, most of what is required are the firings to perform a straight, flat heel-toe…and nothing more.
*As previously mentioned, my pain doc prescribed me a neuropathic pain lotion..
I stopped using it..It helped, but it had a short half-life and whenever it wore off (several times a day), the pain would spike..Or rather, the pain level was still the same as it was when I put the lotion on in the first place, but the perception of it shifted.
As a result, it made it impossible to ever ignore or forget about the pain..or even accept it as it was continually announcing itself. So, in many ways, it began to feel worse. Or, again, made my perception of it worse – which, after all, is a vast majority of how pain impacts us.
*I was able to stand for a full shower; though it was unpleasant enough that I highly preferred not to/avoided showers as a result of pushing myself to do so.
*The boot finally went in the closet as I hadn’t used it for almost 2 months and seemed a closed chapter.
*I was finally able to slowly take stairs one stair per step as opposed to having to do the wedding march for each one. (Granted this is just the two stairs in front of my house, but..every bit counts.)
*I began trying to walk in the park more in order to increase walking on uneven surfaces. At first, any slightly off step..the slightest shift was horribly painful. A misstep that involved any foot rotation greater than 10degrees was shooting pain. Over time, my surface tolerance increased and, around 10months, I was able to walk uneven surfaces without constantly staring at my feet.
*I gave up the cane. Done. Had it. Hate it.
In part, the rest of my body was hurting as if i weren’t using a cane, so what’s the point? In part, so sick of it..And in part, thinking the …on the one hand, it was helping me walk with a normal gait (good). On the other, the longer I have it, the more acclimated to it I become and the more it becomes normal and I rely on it to walk normally (bad).
So, I gave it up.
I also had a thought that perhaps without it, I could kick my body into a good walk..take away its crutch and force it to step up..
*I mentioned in a post a while back about dislocating my second toe on my other foot and yay for a quick cortisone shot fix.
Well, the ‘fix’ never put it back in place..just ‘near’ where it should live..and always a step away from being fully offset again and unbelievably painful.
I’ve been quite..considerate..of it throughout – always aware of exactly what that foot is saying in order to not take that wrong step and yank the toe out again. But, getting rid of the cane meant that my every focus was on anything my right foot was doing – completely ignoring the left. And, two days after getting rid of the cane, my toe came out again.
Subjectively, this was awful. Objectively, I found it quite fascinating as I was able to see the gate theory of pain in action.
My right foot had been the focus for so long..so much pain. But it had improved over time (though still painful) and out of nowhere, something else happened that hurt FAR worse and suddenly, my right foot had nothing to say. For all intents and purposes, it might as well have been my good foot for the prior year.
Given how much pain I’ve had from this foot for so long now, it was amazing to feel ..almost no complaints from it. ..In other words, the pain from the toe was so hideous with each step (8/10) and the pain from my PTTD foot had diminished enough (3-6/10) that the latter was completely overpowered by the former. As if my brain really could only process one large pain at a time, and the toe took that role and then some…suddenly turning the PTTD foot’s pain into..nothing.
As much as I’d prefer my toe stay in place, it jumping out again..and the timing of it..that pain blind did more for my progress in two weeks than perhaps the 4months prior combined.
Suddenly my PTTD foot was walking with far more ease..and simply existing with far fewer complaints. The progress immediately made was impressive.
*I pretty much gave up on physical therapy. I had done it diligently for almost every single day since I started (2months post-op?). Often a good hour+ per day. and…just done.. still walking simply because I will forever be working on that one, but tired of scraping my scars and having piles of scar tissue to work through every day despite it..Tired of working on desensitization and having that awful feeling every time i touched the lateral part of my foot..
I made a lot of progress from the pit I was in post-op. But, I reached another plateau and just..tired.
*I went up about 15 stairs, no longer having to use the elevator.
*I took the dogs out for a romp in the fields. It was the loop that used to be a very short, something-is-better-than-nothing-blah walk (~1mile)..but actually, finally able to go out there and do much of anything was so wonderful.
*As I could stand consistently for a full shower, my shower chair went in the attic. (I still miss it some days as it was just relaxing to sit in the shower here and there..If only I had room in the bathroom to store it for occasional use!)
My foot still hurts during showers though..thus I’ve considered getting one of those squishy gardner’s knee mats to stand on.
*I was able to dig a little bit with a shovel.
I planted nothing this summer as the concept of the edge of the shovel cutting into the middle of my foot..just imagining it was painful enough.. Around 10months, it no longer sounded as painful, so, at 11, I needed a little hole and gave it a try…And am happy to report that the push in the middle of my foot was quite okay.
It was only ~5 digs and thus might get a bit painful were I trying for a deeper/multiple holes. But, it made me happy that next summer, I could get back to the garden.
*I carried a few gallons of water while going down ~15 stairs.
*In a prior post, I mentioned seeing a woman at the plant nursery. Her gait was so off that all I could think was ‘for the love of God woman, use a cane!!’..
I don’t know how it looks from the outside, but from the inside, many days it feels, I look just like that woman.
Some days are half way okay. Or even some points in some days as the pain and issues with my gait of course worsen the longer I attempt to walk.
Walking still does not come naturally. Though, around 10-11months, I can feel the memory of how walking is supposed to be. Unfortunately though, any time I try to take more than a few steps with that ‘normal’ gait, the pain hits quickly and is enough to push me away from continuing. Thus, i walk funny. Every day, every step. The only question is how funny.
I have thus begun considering using the cane again lately. I really hate it..hate feeling reliant on it..Hate the disability thing..but …I do/can walk normally with it. I can typically walk further and faster..And my hope that getting rid of the cane would slap me forward..tough love of sorts that would push me into walking well without the cane as i was no longer enabling the walk with the cane…well, it seems my body chose the other option – to walk abnormally without the cane.
*I made it up to 3.5mph on the treadmill and did a few almost runny steps for the first time since surgery, and they didn’t scream in pain. These ‘feats’ are either celebratory or utterly depressing, depending on how I look at it.
*I went out to dinner with a few friends and was reminded of how slow I now walk as they were walking ‘normal’ while I struggled to keep up…
When you typically walk alone, it’s easy to not notice this.
*Most of my foot feels okay when I’m not weight-bearing. Except – the lateral part when I touch it (though it’s okay with socks/heat/cold/etc…and the whole CRPS thing seems pretty calm/resolved..(yayyyyy)) And the fusion.
In the go back machine..NO fusion. Would not do that again. That part of my foot never hurt before and now, pretty much every day/night.
In many ways, it’s starting to feel like it’s getting arthritic..Some of the pains are identical to the pain I have in my foot with arthritis..to the point that I would actually put down money that there are or soon will be changes that can be seen in an x-ray.. But arthritis or not, it just hurts.. Really not happy about that.
If I did the surgery and my foot weren’t a perfect tripod as a result..I don’t care. I’d even take the chance that I had to get a revision..I would not get the fusion again.
(Though I say all of that with the inability to view the outcome where I went back in time, didn’t get the fusion, and….? happened)
but it hurts. And it’s really hard sometimes not getting a bit bitter or frustrated about something that Never hurt before surgery and now is the ultimate bane.
The rest of my foot though…My heel amazingly almost never hurts. I could no longer tell you exactly where the bone was cut.
The posterior tibial line jumps into pain mode quite fast when I attempt to walk normally, but when I walk with my screwy gait, it is no more active than anything else..Like everything else, it gets upset the longer/faster/etc I walk. But, that is more of a group package instead of a specific issue.
The fusion though…It’s hurting right now..no surprise. An it’s cold out, clamped up pain.
I wonder if getting the screws out will help it at all..meanwhile, i fear doing so and activating the nerves again..
Either way, I try not to think about it. But when i do, i’m *really* not happy about that.
*My calf is still smaller than the other. I’ve been working on that for a while via calf raises ( I was finally able to do them with full body weight at around 9months - though they remain quite weak and sad, hooray that I no longer have the shrill pain from trying to bear weight on a slightly pointed foot.) But as it feels that part of my new walk involves a stiff leg that is kind of thrown forward with each step, i believe that I am lacking the regular heel-toe-push off/calf activation that would be required if i ever wish to have my sad floppy calf match up to the other.
*A few months back, Angela mentioned someone she knew had this surgery and ended up having to get their foot amputated.
Many months back, I wanted mine gone..Now, having made it kind of out the other side, even if i can’t do what i did pre-op..I’m quite grateful that I don’t have to wake each morning and reach for my foot before i can go to the bathroom.
Though the fusion pain is the worst of what I have..and though I think I’m in for some future troubles with it..for now, it stinks but by comparison…There is no comparison. I feel tremendous empathy for anyone going through this surgery and having to remove part of their limb as a result.
*I have pictures of it, but never mentioned it -
I talked a bit here and there about mirror pain – which, had I not experienced it, in honesty, I kind of dismissed the concept as..crazyland pain..(though, given how anxious i was about this operation, I’m not exactly the best “sanity” defender of anything ;) )…But, having seen it in action..I can’t deny it.
A very curious thing though – a physical example of it – I always get holes in my socks where my big toe is. And my toe pokes through and sometimes, the way the sock is, it pokes through a bit and the sock is stitched tight enough/no elastic that it cuts into the tip of my toe for the day. I then take off the sock or pull my toe away from the hole and all is fine.
When I woke from surgery, that line where the sock cuts into my toe – on the Non-PTTD foot was on fire. As if i were wearing a sock that was cutting far deeper than it ever normally would – though I had no such sock on. Also as if..there is a nerve damage memory of sorts that was activated.
A little bit later, as my toenail grew, I had a deep horizontal line (“Beau’s line”) that followed the exact cut out wide “U” curve pattern the holes always did.
It is now almost gone/grown out, but that it showed up – a physical representation (that I’ve never experienced before/since) of a pain that happened on a part of the body that wasn’t even touched – seemingly in response to the trauma that occurred to the mirrored appendage..Very neat and very strange.
*I mentioned a while back about a Pollyanna person at the gym. She’s glowing, positive, everything is always Great!!
She was asking how I was doing and I gave a short-answer could be better could be worse kind of thing..
Her response was that I was young so I had lots of time to heal!! and I’d be Great!
Shortly after, I saw a neighbor at the park who asked how it was and I gave a similar answer..followed by what I do think – I do have years left in which I can progress..So..I’m not where I want to be, but..
Her response was..you’re young. You don’t want to be limping for the rest of your life!
Two sides of the same coin..
*Lastly..for now, at least..Wordpress shows you what search terms people use to reach your blog. A few months ago, someone searched “pttd will i ever get my life back”…
As it has now been a year..and sadly, most all of the changes I will see should be in place by now (though I still cling to the 12-18month piece for the fusion)..I’ve been thinking about that one a bit.
It depresses me some when I think about it, so I don’t much. But,in reality…I don’t have what I did pre-op. ..though, given the nature of PTTD, I don’t think I would/could have without the operation either, so perhaps I should phrase that as ‘pre-injury’.
I don’t know if I’ll ever be able to do an 8mile hike again. That statement makes me quite sad, but at the same time, the thought of such an act sounds painful thus, the moment i even imagine it, I don’t even really want to anyway..
I might, some day.. a long time away. But..I can’t see myself ever going for a run again..Really long walks..if they happen..well..again..maybe in a long, long time..
But the pain has shifted my desires. The thought of walking for miles used to be dandy..quite often desirable. Now, it is associated with pain and thus overall, I avoid such things. But it’s not just an avoidance as in i need to do it and shy away from it. More..I guess priorities change/preferences change/positive associations change/we change..adapt. And over time, I’ve adapted into being someone that doesn’t walk that much or that far. Someone who relies on the park and balls to exercise their dogs instead of walking / hiking side by side for hours. Someone who parks *As close* as possible to any store to avoid the extra steps…someone who isn’t that mobile.
And like I said, if I think about it, it stinks. But over time, i’ve adapted and as such, I don’t think about it as much anymore.
I am tired of throwing my leg when I walk..tired of pain..tired of not being able to go for super long, mind-clearing walks..
The beach, the mountains, the fields..I dearly, truly loved that..needed it..
But..they simply are no longer fun/calming/mind-clearing..they are effort and hit points of pain and ..it sucks. But, as a result, I no longer have the same longing for them and thus no longer the same feeling of loss I previously did..As now, without the strong positive association, what I’ve ‘lost’ is often imagined as ..seeing some scenery with ever-increasing pain.. So for now, that scenery is sadly trumped by sitting on my butt and watching the birds at the feeder..
I do hope that over time it changes and over time I can have even most of what I once did. But right now, I don’t..and I guess I no longer am in a place where I’m looking to get my life back as it has shifted into..this is my life.
And depending on how i look at it, that can really stink..but i guess it also…i’m adapting.
Those of you who went through the surgery – any updates?
..definitely, definitely counting.
I bumped into someone at the park who I haven’t seen since some time last year. She asked how things were going and I replied “well, today is exactly 7months post-op..”
In retrospect, one month out, two months..knowing that you’re 45days out, dandy. But by 7months, to still have the mental countdown intact is a bit of an indicator that things are not as smooth as one would hope.
So where does that leave me?
Hmm…I’m not fully sure. I actually knew 7months was approaching and began wondering about what to put in my status update. The hard part was, all the joy of the prior post had dissipated as pretty much since the 6month mark, I hit a plateau. And that hit my spirits pretty hard..
Not only had I hit a plateau for a few weeks, but parts seemed to backslide a bit as well. I had to reduce the speed on the treadmill…at times I couldn’t use my bike trainer because the pain on the fusion was too much..had points where I had to walk slower in slower in order to maintain even a remotely normal gait…There were times when I was about to take an opiate to get the pain to ease off..
At first though..well, at first it wasn’t a plateau. When you don’t make progress for a few days, that’s standard. After a week, hmm…But it being a plateau doesn’t really start to hit until around 2 weeks; and by 3 weeks, the hit has force.
By 3 weeks into it, I started struggling once again with my mind…it is quite amazing what an emotional rollercoaster this whole process has been. I had no idea at all what i was in for in that respect..I researched to every last detail every procedure and step thereof..but the emotional process..From being told I need surgery..to watching my ankle collapse while trying every alternative option I could..From being terrified of surgery to reaching a calm acceptance..and back to terrified again..And then having the surgery and the holy pain..and more pain and more pain and the pain that wasn’t supposed to be and wasn’t going away and the crushing, utterly crushing inability to walk when i was supposed to be able and the need to find internal drive to push and push and push to carry on with PT..to push further..to keep going..even when it seems intensely dismal and hopeless – to still keep going and trying and doing every last PT exercise there is, day after day..All that to make an inch of progress…and then having to fight the utter despair, still unable to walk..clearly never able to run again..ever. And, while being blanketed in the endless thoughts of futility, to still keep going and pushing and trying..
Yeah.. I wasn’t prepared for that.
But I digress.
Once again I was struggling with getting down. Even more amplified this time as it was at the point of..with the exception of perhaps three days, I’ve been doing PT every single day for the last…5.5months…And a good hour a day for the last 4months..I’m done. Spent.
I don’t have any more boostraps to pull..
And I faltered.
I missed a day of walking..and then skipped working on the scar tissue and balancing and desensitization..I began to call it quits. Mentally I just didn’t have it in me anymore..To be broken and have to push on at the same time..it’s a horrible place to be in..When I’m in good spirits, when I’m making progress, sure the regular PT stinks, but I have inspiration to keep going..Without that…or on top of it, things getting worse…it’s infinitely difficult to keep going.
Meanwhile, what hit me 100x harder was that I’ve been thinking that I could take the dogs out to our boring field. That I’ve walked around the park enough that I’m ready to go to step 2..And that thought alone is inspiring to me.. But my limitations slammed me in the face when at the very basic park, off where no other dogs are, a high-ranking dog came barreling up to us and one second did a high-rank dance with one of my dogs and the next, was on him biting him..And I couldn’t do anything to stop it. The guy was an acre or so away and didn’t call his dog..didn’t give a crap as some awesome dog people are..While my dog was perhaps 10feet from me, but I couldn’t get there in time..Adrenaline pushing, I was race hobbling over, with the best I had being the ability to throw my cane at the other dog while swearing at him like I’ve never sworn at anyone before.
It broke my heart.
So, the fact that not only am I putting in this incredible amount of effort and not making progress, I still can’t even do the utmost basic I need to in order to take part in the most basic field walks with the dogs..
Meanwhile, I had my final session with the PT person at the pain clinic..during half of it, it was all i could do to push the tears away..If there were to be big changes, the time passed is when they would have happened..From here on..it’s bit by bit..if at all..
I talked to her about being spent…about what I could do to alter my schedule/find some PT/life balance so to speak..A lot of the stuff on the list remained a daily thing though…though she tried to offer some alterations to make them fit in more with life as opposed to being a set separate time requirement..Nonetheless, i told her that i didn’t have much more in me but she got me to agree to six more weeks..At first I thought okay, i can do that..six weeks.an end point, not endless.. But by the time I got home, six weeks felt endless.
Nonetheless, I kept going with the daily routine..despite the backslide..
While at the clinic, I saw the physiatrist briefly as he had some neuropathic/NSAID combo gel samples that he set me up with..In part it was the usual ketamine/gabapentin/tetracaine, but unlike neuropathic specific compounds, it also contains diclofenac. When I got home, I pretty much bathed my foot in it..and repeated a few hours later. But, unlike the prior compounds i tried that were more of the ‘possibly helping, can’t tell..’ This one definitely helped. Unfortunately, it only takes care of the surface pain (perhaps it just has a high % tetracaine and the rest is moot), but that is far better than nothing.. Anyway, I decided to try and use it wisely as I only have a sample at the moment, so I covered my foot right before walking for two nights..And somehow – perhaps with the kick of the pain relief..or perhaps it was just time…somehow, i broke the plateau.
That alone makes me kind of want to cry with relief.
So now I can type about the plateau – in past tense..And hooray for that.
And now, I am back to more elevated spirits – the outlook of month 6′s post..
So, getting to summary of where things are at (as I clearly am quite talented at summarizing and not rambling on in the slightest):
*I’ve been able to increase my treadmill speed – past what it was at month 6..
*I still use a cane..But I’ve been having points here and there around the house where I can walk slowly but relatively normally without it. And am having up and down periods outside where I can keep an almost normal gait (structure AND speed) with it – which is a huge step as previously, the only way I was walking ‘normal’ at all was very, very slowly..
*The above progress signifies to me that I will likely soon be able to walk without it – while out..Though I reckon it will be with me as a just in case for a while to come..And..quite possibly i’ll be needing it off and on for a long time to come. As long as the long time ends, i’m okay with that..
*In an effort to up the ante, I’ve started taking more and more steps around the house without shoes. As a result, I’ve actually reached the point where I can do a heel-toe pushoff on the carpet, barefoot. Not repeatedly..But to be able to do it at all, is huge.
*I am able to keep my foot down more and more. This is the first blog post I have written with my foot on the floor.
I now spend around 2/3 my work day with it horizontal and 1/3 like a normal person on a couch..
*It has moments of off coloring, but they’re almost always within a more reasonable range. And, the other 90% of the time, it looks like a foot..
*When I do something that really agitates it like calf presses, it pours sweat while my nerves scream. The rest of the time, its temperature is fully stable.
*It continues to have little pockets of swelling – particularly around the lateral incision. But, 3/4 of the time, my ankle is defined and the pocket swelling a centimeter at best.
I also no longer need to wear a compression sock – which, adding that into the lack of elevation makes the lack of swelling significant progress.
*The hypersensitivity remains in the lateral area, but it has diminished to the point of being an unpleasant irritant..One that ..meh..if i didn’t know better/weren’t trying to fix things, i’d probably avoid touching. But it is light enough that I can continue conversing (with only minor distraction) with my PT person while she is holding it. Whereas before – well, before, it couldn’t be touched..but then it ‘could’ but the whole world stopped until the touching stopped..Now, it’s 90% normal..
*As above, I keep doing daily PT. I’ve begun doing more balancing stuff..continuing to try to break up the scar tissue which there is a giant mess of in the lateral area..walking of course..endlessly..well, the list goes on for a bit so i’ll leave it at that.
*I was doing the hamstring isometric for a bit and the fibula/calcaneus pain went away..unforunately, it came back..thus I’ve been trying to do the iso again consistently. It is nice that it seems to be helping but frustrating that i have to keep doing it repeatedly, possibly forever?
*In an effort to get some new exercise in – and particularly to strengthen the part of me that has now spent far too long on the couch, I got the Brazilian Butt Lift videos. I haven’t even touched the cardio one and bike instead and have had to modify a decent chunk of the moves. But – more and more I’m having to make fewer modifications; to the point that one of these days, I’ll just be able to do the whole thing as-is..Minus any jumping.
*My left foot has been a trooper throughout this. Until the last month at which point, it has made its presence quite clear..On top of the midfoot arthritis and 1st TMT popping out of place to the point beyond discomfort, my talus has decided to start popping out of place as well – which stops me in my tracks quite literally.
Not specifically related to my PTT surgery – except that I have been amazed at its compliance these months and..I think that any issues it has had/was bound to have have been put on a faster schedule as a result of the extra load it has had to bear. Thus..I have the background feeling that I might be eventually reaching the end for foot one, but foot two..
Somewhat relating this to the surgery though is that – I had no expectations I would be relying on it for so long – and so significantly. Thus a lesson learned of sorts is that..you never know just how long it’s going to be.. So, if the other foot has issues or starts complaining, it’s probably best to respond to them as if it will be your go-to foot for a long, long time as you just never know.
*I still have nerve pain..and structural pain..and enough pain that I’m not sure which is which..and not sure it even matters..It just hurts and that alone grows old.
But, I also have times without pain. Sometimes when I’m on the couch, it really is just a foot..A decent chunk of time it’s in a battle with the other foot of which one can yell louder..But, there is still a chunk when it is no different than my pinky finger. Just a part of my body, sitting there.
I’ve also noticed that more and more often, when there is pain, it is in specific areas. It always has been ultimately sourced from specific areas, but it tended to take a more widespread route; whereas now..well, last night for instance, there was a lot of pain in my heel along the cut bone line and from the 1st TMT fusion up through the metatarsal/phalangeal joint. But the rest of my foot, the rest of the calcaneus, the other tarsals/metatarsals..felt fine.. So, the fact that the pain is becoming progressively localized strikes me as a good sign.
Unfortunately, it also seems that every time something begins to quiet, something else jumps in. Currently, that something else is a very new pain on the 5th metatarsal/phalangeal joint. And, unlike some of the pains that I can walk through or push through, this one yet again has me cutting walks short and putting increased weight on the cane as it feels with each step that I’m walking directly on bone.
*The plantar fasciitis issue I mentioned in the last post seems to be improving..I’ve been using this spiky ball thing to break up the bands and it seems I’ve reached the point where enough is broken up that even if my body starts building new ones while I’m at rest, I’m still ahead of the game.. That said, when I get up, everything is locked and I have to walk like a penguin for the first 10 steps or so…
*My knee has been adamantly protesting the increased walking speed. As best as I can tell, my gait is relatively normal – though I don’t have any real idea what that would feel like anymore..But I think it is…So I don’t know how to help my knee as it’s not something obvious I’m doing that I need to alter..
It however really knows how to throw out its own complaints sometimes..To the point that I’ve started wondering about bracing it.
*I once again feel like a grandma listing out my ailments.
Not relevant, but thought i’d mention it.
*My PTTD calf is still teeny. Which, given the lack of use, I guess is expected. I was however hoping it would have bulked up a bit by now..Unfortunately, calf presses are still out of the range of remotely tolerable. So, I guess it will be puny for a while yet.
*I wrote a month or so ago that if I had to the surgery again, I would. I’ve been meaning to append that statement ever since.
Despite it all, I would do the osteotomy again. And the tendon transfer. And the gastroc cut, I guess. (The latter didn’t cause me significant issues, but along the healing path, my achilles has tightened, thus making the gastroc cut kind of pointless.)
I would however not do the fusion again. That is my one regret.
I try not to dwell on it. But I absolutely wouldn’t do it again. I would take my chances that maybe i’d need two surgeries..
Part of the reason undoubtedly is that in the end, I got it because they said i needed it..because both recommended surgeons said so..Because some articles i read recommended it as well..But, unlike the osteotomy, I never with full certainty saw the need for it..over time, I understood the generic reason..But never did I see a black and white need for it..Unlike say the osteotomy, never did I see the ‘fix’ essentially failing without it.
Without the osteotomy..a tendon transfer is just waiting for disaster. But the fusion..I get that it theoretically offers a synergistic effect to the osteotomy, but again -I’d take my chances..I also get that I had hypermobility..But I also have it in most all my joints and they don’t need fusions..I also get – which to me seems overlooked by the surgeons – that I’ve had that hypermobility for most, if not all of my life. …Thus my body is used to the motion in the joint..thus, my body doesn’t react to it as it does other nonessential joints..Thus the motion my body was used to is now locked and thus offset to say…the first metatarsophalangeal joint – where I now have a sizeable amount of pain while walking – and where I never once before had a single issue.
So yeah..in do-over land..a giant no on the fusion. With full certainty, I would not do that again.
I think that’s about it..I’m in good spirits again..am hopeful again..Will be doing PT for another 6 weeks and..things are going well enough that i’m open to having to do more beyond that as i figure i will…The only alternative I see is getting fat, sitting on a rock and throwing a ball for the dogs..progressively losing my ability to walk…progressively increasing pain..taking lots of drugs every day to offset said pain..and…Some days, toward the end of the plateau, I started to give up..or at least wanted to..wanted to be okay with that alternative. But, I’m not..So, 6 more weeks or 6 more months..I don’t have a choice..until i get to where i need to be, I have to keep going..
It seems a lot of people who read the blog start with the status updates that are linked to via the home page. For those who have read the rest of the blog, i apologize as the first part is a bit redundant. (And for everyone, I apologize as this post is incredibly long!):
I was diagnosed with CRPS in the beginning of January (~3mos post-op). Thus keep this in mind when reviewing the update below as my progress clearly isn’t the standard..However, though it is unlikely, my experience is still a potential to be taken into account when contemplating this surgery.
That said, i feel like I’m doing really well. Or at least well compared to where i was at and where I could be. I still have pain and have accepted that I may forever. But, compared to before, the levels are usually pretty low and there are times when I sit and my foot is simply a foot, not a source of contempt. Conversely, there are also still times here and there where the pain may spike – but it is now very rare to hit a 7..usually topping out at a 6..
Most often, I would say the pain floats between a 0-4 non-weight-bearing and a 3-6 weight-bearing.
Right there is a huge change as previously, it didn’t matter if i was on my feet or not. If my nerves were in arms, yes, standing/walking was 1,000x worse, but simply sitting could still be painful enough to drive me to take a pill. Now, getting off my feet holds almost a guarantee to be a relief when compared to what I might feel while active.
Additionally, my pain levels are now far more responsive/willing to calm quite quickly. Previously, in theory, i could take the dogs for a romp in the field…but if we got 1/4mile out and my foot screamed…I’d be out of luck..I could stop/sit/whatever and if my foot was in upheavel…none of that would matter. Now however, though I have yet to do it, I could go out, get 1/4mile out and if i hit issues – sit for a moment or five..and my pain would quite likely significantly diminish.
There are of course caveats to this. Such as, i have to stop while the pain is still in its infancy. Should I do my usual ‘ignore/push through/carry on’ method of being, it will grow – and will reach a point where things have started to get spun up enough that just sitting for five minutes won’t matter in the slightest. So, it requires a significant shift in my response to my body’s complaints – and a learning process of where those ‘danger’ lines are. But, i’m slowly working on changing the first and am picking up on the signals of the latter.
The main sources of pain continue to be the fibula pressure that I had pre-op..the 1st TMT fusion site…the midfoot…the 5th metatarsal/cuboid…and the lateral incision area/achilles/heel. (aka my entire foot)
The first, I held the theory that my foot was tilted – and with the tilt came the squeeze between the tip of the fibula and the calcaneus. But after surgery, once the tilt was adjusted, the new tendon would provide enough resistance to the lateral tendons and I’d be good.
As time passed, this didn’t seem to be happening – which left me somewhat concerned and dismayed as part of why I agreed to surgery when I did was because of this particular issue.
I brought it up to my pain PT person and she agreed with my original theory – BUT – told me that the fibula can actually drop a little bit..That if the tendons that were holding it got stretched out a little, it can shift down ever so slight – thus – though i got the tilt fixed, I’m still going to have issues.
She then showed me the angle from the tip of the tibia to the tip of the fibula on my ‘good’ foot..and the definitively more significant angle from the tip of the tibia to the tip of the fibula on my post-op foot..
In theory, there is an isometric lateral hamstring exercise that can help pull the fibula back up a bit (which I am now doing). However, from the sound of it, it’s something you need to do quite regularly as otherwise, the fibula will slide right back down.
The 1st TMT fusion site..This one gets to me a bit as the metatarsal would regularly slightly dislocate before surgery..as it does on my other foot..as do many of my joints..So it was never a shiny happy spot to begin with. But, as I was out today and it was acting up, i realized that I fully understand the reasoning behind the main surgery – but ended up having to go on their word of the ‘need’ for the fusion – without having a true, deep understanding of why…The other surgeon showed me how stable the joint should be..and i got that in theory it was a synergistic effect..But..I still didn’t and don’t truly understand the full reasoning behind it – the way I do for say the osteotomy. Thus, now having regular, solid (4+) pain in an area that previously was just a source of irritation (*never* bad enough to ever have made me consider operating to fix it)…well.that’s a bit of a source of contention for me.
On the one hand, it’s over and done and I can’t change it..And on the other..when it acts up over and over..I find myself a bit pissed about it…and..feeling some regret over having had it done.
Moving on – the midfoot as well is not a happy spot. It definitely seems the 3rd nerve block has worn off – which is a good thing as it makes me feel like the piles of work I did actually made huge changes; as opposed to before when the progress seemed 99% nerve block, 1% me. But, with this wear off, some of the midfoot issues have returned. Nowhere remotely near what they were pre-block..but present nonetheless.
As mentioned in other parts of the blog, I have midfoot arthritis in my other foot. Mildly disconcerting to me is that now, often the feelings in the post-op-midfoot are pretty identical to those in the arthritic foot. In other words, if I knew what arthritis felt like and suddenly jumped into this body, i would swear that this post-op foot had it.
But, I’m hoping that that’s also just the feelings one has when things are shifted around and still adjusting..Some inflammation…some upset..but soon to settle.
I got my 6month x-rays (posted in the photos section) and to my completely untrained eye, i see absolutely no signs of arthritis..but I did suddenly notice that the lisfranc joint has shifted. Around the 3rd metatarsal, it goes up in a little wave..Based on this, i’m thinking that a.of course it shifted – my foot is now a good .5″ more narrow than it was pre-op and, with the creation of a bit of an arch, things had to move around. And b – with that movement comes discomfort and some unhappiness while everything figures out the new state of being. So, hopefully, it will ease off.
However, even if it doesn’t…as said, i live with the identical feelings in my other foot all the time..(though yes, somedays i *definitely* wish i didn’t)..and…like several of the other pains – it’s a structural one..a rational one..a cause and effect one.
Previously, 90% of the pain was nerves freaking out because the wind shifted course 2degrees west. That I couldn’t handle..I never knew what was coming..how intense..any of it. There was no control..no predicting..no realm of ‘I can safely go to the store and have confidence that I will be able to get through the store and make it home without having to pull over and breathe my way through it’..Or, I can safely drive all the way across town and not worry that my foot will FREAK out when I’m 20min away..on the interstate..seizing up and jabbing like there’s no tomorrow..
Now, the nerves have tamed and the rest is cause and effect. And as much as it still can suck..It’s a whole lot easier to handle.
As for the 5th metatarsal/cuboid, it seems to be a combination nerve and structure issues. As I realized while looking at my x-rays, it seems my 5th metatarsal has rotated…Could be a fluke..could be an expected result of the surgery. Either way, seeing a distinctly obvious visual difference (as in obvious to me who couldn’t find Waldo in an x-ray) at the 5th mt/cuboid joint..Well..I guess in some ways, it makes me feel better to see something that explains my pain… (Though I could explain it in theory – I was forever pronating, now I’m supinating, of course it will hurt..but…to *see* a change – not just theorize about it..there’s something to be said for that.)
I talked to the pain PT about it and she pointed out that it makes sense to have both nerve and structural pain as the shift in the structure can mess with the nerves. They could be compressed when they’re used to being free..free when they’re used to being compressed..or, given my hypermobility, one could be getting entrapped as my bones shift around..
And that leads me to the final piece of the main pain areas (yes…apparently I’m writing an essay on the individual pains!)..The lateral area is still minorly hypersensitive..but i’d say 50% shifted to numbness….40% shifted to normalacy..and only 10% remains..overreactive.
That is a huge, huge, wonderful change.
And, I no longer regularly feel like I could tell you *exactly* where the heel bone was cut..
Additionally, day by day, it progressively feels less odd to walk on my heel..the bone’s relocation has slowly been establishing itself as normal – as has the now empty space where there once was bone.
BUT – I have been having a lot of issues with pain in the heel/achilles/lateral area – all of which, as per my PT person, seem to be plantar fasciitis related.
As per her, my body is continually in a ‘healing’ mode..whenever i sit or sleep. But it somehow has taken healing mode to mean lockdown..Which means that any time I stand after sitting/sleeping, I get to experience a lovely tearing of all of the newly interwoven fibers that have been making my achilles shorter and shorter and wrapped my foot in a tightly wound package.
Since I had my gastroc cut to eliminate equinus, to then have my achilles shorten as part of the post-op issues..I am very unexcited about that.
So, for now, I get to spend a *lot* of time trying to work out scar tissue and any other fibrous bands that are latching while testing out different PF sleeping devices, trying to find a way to keep my foot in neutral without upsetting my nerves.
On the plus side – the mirror pain is mostly gone. There are occasional moments when it spikes up – but so far, that directly correlates to the nerve spikes in my PTTD foot. Thus, as the latter has been settling, so have any mirror issues..
This is quite nice as it’s bad enough having a deep, sharp ‘where they cut the bone’ feeling in one foot – let alone in both – especially when the second foot wasn’t cut at all!
So there. 1800 words as per wordpress and all I’ve talked about are my pains..I feel like a 90year old going on and on about such things. But, ultimately this surgery is all about pain…were it not for pain, we probably wouldn’t get it..so.. oh well.
Moving on…sort of..
I ‘graduated’ from seeing the MD at the pain clinic. I have a few more sessions with the PT person and then, barring a backslide or my needing new help, I’m on my own.
i feel that I have come so far in such a short period of time. And i know that i have done so very much research and work on my own..but being sent off fully solo for some reason is a bit scary for me…I guess I still feel like – no matter what I put into it..they’re the magicians at the magic shop and without them, i’ll be Wile.E.Coyote – suddenly looking down and realizing I ran off the cliff a while back..
Anyway, it’s nice to be moving on from there..though..when i started, i imagined that at the point of moving on, i’d be 1,000x further than i am..But..I am so very much further than i was..
Overall though, i think in reality, the biggest change was simply my accepting where i’m at and who knows how long i’ll be here..
The shift from acute to chronic.
I still walk with a cane..may very well need to off and on forever. BUT, i have great (and i think quite reasonable) hope that it will be far more off than on.
I have been doing more and more of my slow treadmill work with no cane and no handlebars which is WONDERFUL.
It’s nowhere near where i once was (pre-issue), etc etc etc..But it’s miles from where I could be..And it’s a solid shift in the right direction..
Two months ago, I most definitely was not walking normal at any speed on the treadmill without the handlebars..The only time I was able to was during the 24hours immediately post nerve blocks..Other than that..not a chance.
So, I am getting there. And, as above, my cane is my cane..oh well.
My foot’s thermoregulation is loads better. I could likely put my foot in a hot tub now..Not going to try it any time soon, but at the very least, I can put it in pretty hot water and though it still gets a bit more red than my other foot, that no longer includes shades of blue – and it recovers almost immediately after I remove it from the water.
Ice on the other hand..you couldn’t pay me to go near ice..I quite possibly will never have ice touch that foot again as long as i live and i’m plenty okay with that.
When I started PT at the pain clinic, the PT person mentioned getting to the point of being able to ice..and that we’d get there together..Given that I only have 3 sessions left with her and we haven’t even gone near such a thing, I’m thinking that she’s not going to try..She mentioned using a bit of ice on my heel for the PF and I do believe my face lost its color as I felt myself physically pull back from her as my entire body clenched..Like I said, no ice ever again..fine by me.
I also cannot walk without shoes. Or rather, i kind of can – if i do the dead leg dragging walk of the 1950′s-black-and-white-horror-movie’s-hunchback. But anything even remotely resembling ‘walking’..i’m just now beginning to tolerate standing barefoot in the shower for the full shower. So, like ice..if i can never go barefoot again..I’m okay with that.
I’ve been walking through the park more and more when I take the dogs out to play ball. Walking 5 acres is becoming part of the not-a-big-deal-routine as opposed to an utterly dreadful task I had to push myself to even perform part of..On top of this, the parks are inevitably uneven ground..Previously, the slightest misstep..the slightest off-center movement of my foot resulted in crushing pain. Now, though some rotational steps are still unbelievably painful and I still often watch the ground to monitor each step, I am gaining range of motion -and with it, the ability to make such slight, natural adjustments without incident.
Based on this, I do believe we’ll be trying out the ‘boring’ fields in the nearish future. We may not go the whole mile let alone the usual 2-3..and it will probably be a mighty long time before we’re actually hiking hiking again, but..to get out there again..there were definite points where I really didn’t know if it would ever happen..
I also have been able to be a bit more aggressive in spin class/riding the bike trainer. I finally am able to stand while riding – though in part due to lack of muscle and in part due to not wanting to push things, I am only doing so slowly, for short bursts – but that is a huge step that was previously undoable as the slightest misstep on the pedal was excruciating.
Similarly, I can simply pedal harder as again – if my foot was off ever so slightly and my ankle went to the side at all..holy mother!..now though..well, sometimes, yes..it hits that point. but most of the time, it is reverting to simply being part of any normal range of motion.
The swelling has drastically improved. When my foot is down for longer periods, it picks up a bit, but overall, it has whittled itself down to a lateral malleolus pocket (focused between the tip of the fibula and the lateral incision) and the area surrounding my achilles which countinues to be about 3x larger than my other foot (but this too is better, I can now actually feel my achilles in the mix as opposed to just a thick chunk of who knows what along the back of my ankle). The rest of my foot is doing quite well – I can now see outlines of bones/ligaments that were previously indescernible due to swelling..and I no longer have a fat ankle.
Making this even happier – I no longer have to sleep with my foot up, and while working on the computer all day/through the evening, I am now able to simply keep my foot horizontal to the rest of my body (e.g. a foot rest) as opposed to truly elevated.
Soon enough, i’m thinking it will be happy being down all the time, but for now, simply not having to elevate it above my heart is wonderful.
One of the screws in the fusion is driving me nuts. There is no fat padding or any protection over it and now with the swelling gone, i can feel its outline when i lightly touch the skin. This in and of itself would be fine, but it rubs against everything…putting on a shoe..walking…The screw area gets upset quite easily and has ample reason to do so.
I saw my surgeon for the 6month checkup (I see him again in another 6mos). He said that that screw bothers people the most and he can take it out after a year with a simple procedure…And post-removal, I can walk right after – whereas with the heel screws, you can’t. Which, for me..would not be ideal.
There is some risk for me, but I think the risk is minimal and is far overridden by the alternate of having this thing around forever. So, though i reckon i’ll do whatever ‘cautious’ pre-procedure steps I can, i do believe it will be coming out.
As for the heel screws, I can’t tell if they’re upsetting my foot or not. Via the x-rays, he did a great job of inserting them deep enough in the bone that I don’t visually see how they could. But visuals aside, up til now, i’ve had a lot of heel issues, but have never been sure if it is not just the chunk of scar tissue + the new-found-plantar fasciitis.. And most of my issues don’t have the consistency i would expect if it were the screws..
I still don’t fully accept the CRPS diagnosis. I accept sympathetic pain..nerve issues..all of the rest, but I guess, to me, “CRPS”..it is such a heavy connotation. It means forever. And not just forever in one spot, but forever with the ability to spread if it so desires..
Though I think acceptance is good, I don’t know if I’ll ever be able to genuinely refer to myself and CRPS in any real way. I’m at the point where I can from time to time refer to ‘CRPS’..but use it in a very hollow manner that holds no emotional meaning for me..I do web searches/read literature on ‘CRPS’..but again..in a very detached way.. I’m okay with that for now.
…With rare exception (read 2x in the last 3months), i have been on the treadmill every day..For the last month or so, I have been doing 1-2miles on it each day..I started having weird side effects from NAC so I stopped taking it..which is just as well as I don’t think it’s necessarily a solid long-term thing..I’m still taking magnesium..Tried the Lyrica again and..it’s not for me..
I have used opiates intermittently throughout my recovery as a tool and I think that this has helped me progress far more quickly than i otherwise might have as each time i would take one, i would push further on the treadmill/PT/whatever work i was doing – and then during the off time, would make very sure i was keeping that new level going..
Which is not to say that I haven’t/couldn’t push without them. I have and could..just that, like most relevant pharmaceuticals (e.g. gabapentin and pregabalin), they have offered an ability to push to levels that would likely take me *far* longer to reach without them.
The key here of course is that unlike gabapentin, one must maintain strict use of them as a tool lest you become their tool..Which, as I did so, I still have no dependence and no tolerance. However, clearly some people can’t do this and the results can be devastating for those who thought they could and found out they were wrong. But, for select patients, I strongly believe intermittent opiates do have a valid place in the initial CRPS recovery process.. And, given how many physicians would either disagree with this concept, or simply fear prescribing them, I feel fortunate to have been able to use them. (Granted, if i was able to get the same relief from gabapentin, pregabalin, or some of the other drugs, that would be another story..but..as it is..)
Other than that..just PT PT PT PT PT PT PT. A lot of research and reading and learning about nerves and pain and glutamate and ganglia and potentially helpful supplements and pharmaceuticals…followed by testing out a theory here or there..but overall, each and every day – PT.
I must say though that I am getting tired of it..Tired of a minimum of an hour+ a day spent on my foot. For a short term thing..for an immediate fix thing..I had all the dedication in the world. But now, as my foot improves..perhaps i am simply no longer as driven by pain..either way, the treadmill every day..balancing..toe crunching..scar breakups..heat desensitization..touch desensitization..range of motion..now dealing with plantar fasciitis as well…the list goes on and on and…And I’m reaching a point where I’m having a hard time getting myself to keep at it.
I still am keeping at it, but i see a point in the near future where i just can’t keep doing all of this anymore. One simple short thing, fine. But task after task after task…
My PT person gave me a spiky ball to break up the PF fiber bands and wants me to use it before i get up in the morning, before i go to bed…before and after i’m on the treadmill..and on both feet as apparently it contributes to some of my other foot’s issues as well..
Meanwhile, I mentioned in passing about my other foot and the prognosis that the only fix for it is a full midfoot fusion and she felt that in order to prevent the arthritis’ progression, i needed to be massaging my foot every day..icing every day..putting it in a warm bath every day…using the ball to break up the bands…scraping the ligaments around my dislocated toe and my other now-clawed-toe – every day…And quite honestly..after the last six months, i am in *no* hurry to ever have another surgery and i would advise anyone to do whatever they can to prevent the surgery i went through let alone a full midfoot fusion which as per my surgeon makes this last one look like cake..But doing all that every day..plus doing crap for my pttd foot..plus trying to work and exercise and keep the house up and take care of the creatures and make meals and have even a basic version of a life..i just simply can’t. And perhaps some day, i will be pretty much incapable of walking on my left foot and i’ll need the fusion and i’ll curse myself relentlessly. But right now..I just can’t.
Overall though, i have been keeping my head up. There are however days or simply hours where I have a minor tantrum inside..where I don’t want to do another minute of PT..don’t want to deal with my foot..am so sick of the pain..etc etc etc. But, fortunately, I get past them.
Occasionally, I have to push myself a bit to shut up and do it…But often, the internal whine just self-resolves and I carry on.
Actually, I haven’t really gotten down about the state of things in a while..pretty much since the time that I stopped taking gabapentin and accepted the situation as chronic. I’m not sure which was getting me down more, but either way, since then, in the scheme of things, my momentary glitches are truly momentary. Given how often I was struggling to keep my head up before, it’s quite nice to be back to ..a content neutral.
Yep…I guess that’s about it. An incredibly verbose update. Of which, I suppose I could have given a simply summary: Making a lot of progress..still nowhere near out of it..but much, much further than I was a few months ago.
So be it.
I did yoga for the first time today since surgery. It made me so happy to be able to do that again.
Warrior two was definitely not my friend, and I had to hold something for balance when doing warrior three with my surgery foot…but the fact that I was able to do yoga again – doubly so as it requires being barefoot which my foot detests - made me very happy.
The longer I was on my feet, of course, the more my foot and ankle began their protests. They were quite clearly about to explode in pain around 25minutes into it…but, that just so happened to be when the weight-bearing section completed and it was time to move to the floor anyway.
(And I did downward dog! Not as pretty or with the same ankle bend as I had pre-op, but compared to 3mos post-op when I tried down-dog for a second only to discover that it was a complete effort in futility…Hooray!!)
In theory, around week 26 (half way through one year), one will be at around 80% of what they will achieve at full recovery. Or so said the articles I once read..
Like many things throughout this, i flat out don’t accept that. If I did, i would be unbearably depressed…But I don’t, so..i feel fine.
I have made progress – even since my last post. But progress or not, that this would be 80%…that would sink me.
Anyway, a status report of sorts..
I’m still the girl at the gym with crutches…or now, the girl with the cane…But I’ve been there enough – and been there with the assisted device enough that I’m no longer approached by much of anyone. There is the occasional person that says something..And one guy that asks what happened pretty much every time he sees me. Overall though, I’m left alone..And I can’t say I mind one bit.
That said, similar to purple hair, there is something noticeable and different about a cane. It has reached the point for me where it is almost part of me – the same way I adjusted to putting on shoes from the moment I woke..Or the way I wear clothes most everywhere I go..My cane is just part of the process…
I have however noticed that there aren’t many people my age who use a cane. In fact, I don’t think I’ve ever seen one before..And, there aren’t many people of most ages that use one..Particularly below…70.
As a result, people get the door for me..In general are kinder – if I’m in someone’s way (which is pretty much inevitable given my speed of movement), in general, others tend toward the ‘no, no..take your time’…Or they apologize for getting in my way..
In fact, my 110% non-empirical research shows that people are in fact kinder to someone with a cane than they are to someone with a crutch. Even when that crutch also includes a boot.
Perhaps the latter points to injury and while people can relate to injury, they also have a ‘get over it’ attitude toward it..Whereas a cane points more to a state of being which creates more empathy? Or perhaps my sampling was significantly impacted by the weather of the day and is thus completely worthless..Who knows. Either way, so far..People are nice.. And there are no awkward reactions that those in a wheelchair get..
Some people offer to help..Some don’t..Either way, I’m good.
The biggest change that I do love though – No one (except the guy in the gym) asks what happened anymore. Again, apparently, cane points to state of being..thus that question breaches the line of asking about a genetic defect – so people either just don’t ask, or don’t even wonder. In reality, i think it’s more of the latter as unlike the people who would watch me with a boot/crutches and you could feel that they wanted to say something..Now..nothing..I’m just part of the scenery..Plus cane.
But, that’s not much of a status update, so..carrying on..
I’m at the point where I’m sick to death of my foot. I now avoid interactions with neighbors and some friends as I don’t want to talk about my foot..The mere question about it makes me intensely irritable at times..I want nothing to do with any of it anymore..i just want to be part of the scenery again. So, that’s a bit of a struggle.
Meanwhile, I still go to the pain clinic every week – and inevitably the how’s the foot is going to be part of every appointment..After all, it’s why I’m there..Thus more and more I’m thinking of taking a week or two off from there..Either way though, some appointments are worse than others.
So..here I sit..writing about..my foot…But, I feel like i should as I have made some progress..So, on to that:
I wrote before about what seemed to be the block wearing off. The midfoot pain that essentially vanished post-block #3 returned. Thus I was afraid that I’d be back to ground zero..and of course need more blocks.
Wisely though, my doctor held off on another one just yet and – the pain ended up plateauing. Thus it is worse than it was two weeks ago – BUT it never got as bad as it was two months ago. There is a chance that part of the block wore off – while part is still working..and the drop could continue. But, it is also quite plausible that the block simply wore off – and this is where I’m at.
The latter concept greatly lifted my spirits – after all, as mentioned, i felt like I was putting in so very much effort for an inchworm of change. But with this – if the block is now done, and this is where I’m at – that shows immense improvement as a result of the work and nothing more.
Anyway, despite the increase, the pain isn’t that bad. At times it hits a 7/10 when walking. But it never hits knee-buckling levels and..it also has still been at points of a 3-4…
Often it’s in between..ranging from 4-6..Which definitely limits my walking..particularly the duration of it since if the pain is to hit the higher numbers, it most often does the longer i walk..
So – not wonderful. But compared to what was..and again – with the thought that this is no longer a ‘block’ level..that gives me hope.
Part two – and this is huge for me – I have been able to walk – very, very slowly – with NO assistance. I now spend about 10minutes on the treadmill at about .8mph with no assistance, while walking heel-toe..relatively normal.
Any slower or faster and it’s all over. But – the fact that I can do this – at any speed – is phenomenal. And something I can can add on to.
This is the first time since surgery that I have been able to walk heel-toe without assistance. And, in fact, is the first time I’ve been able to walk normally at any speed without any assistance (including a brace) for many months before.. In other words – as much as things may seem crappy from time to time, i am pretty solid in the concept that my greatest fear was that I would end up worse post-op than when i went in..And that didn’t happen.
Had I not had surgery, i would have had very limited walking..would have had to use aids to walk..And would have had pain during most walking (albeit at often lower levels and a smaller area in pain). So, the pain itself…that one may well be worse – or have the potential to be..But the overall functionality..I lost nothing by having surgery.
Thus, despite everything that is going on now..despite the continued issues with pain..knowing what i did about why I had surgery..and knowing where I’m at now..If I had to do it over again, I would.
I’m not at the ideal point – but in reality, i wasn’t at the ideal point as soon as my tendon began to go..Thus it isn’t so much an ‘oh, I was messed up by surgery’..I had surgery for a reason. And right now, things kind of stink. BUt they would have as well even without surgery. I now have a chance of walking – unassisted – in the future – with minimal pain. I had no such chance without surgery.
As much as i haven’t spent my time enmeshed in regret, it is still nice to reach the point of realization …the point of decision that if I had to push the redo button..i stand by the choice I made the first round.
Anyway…I continue to use the treadmill every day…try to break up scar tissue..no longer do mirror therapy as it reached points where I couldn’t deny that I was having mirror pain and the last thing in the world I want to do is potentially further any cerebral connection between the two limbs..still take omega 3s (for generic inflammation), NAC, magnesium..
Insurance finally allowed Lyrica..I tried it and it made me want to pass out..yay..get in bed, ready to sleeeep…and then my brain wouldn’t stop..thus little sleep (and the little sleep i did get was filled of incredibly vivid dreams)..The next day, my brain eventually went back to shutting up (though most of the day I was HUNGRY)…that night, happened all over again…the next day, my brain stayed more active (and HUNGRY)..and so on..So..that’s not going to work.
I can’t take it in the day as it makes me zonk – but I can’t take it at night as I can’t sleep.
I talked to the doctor and agreed to try it a second round. Though, as I told him, i have little patience for the side effects – even if they ended up being short term..at this point, i just don’t see its potential to help as strong enough to outweigh the constant cerebral interference. So, I will try – but i don’t hold a lot of hope for it..And, won’t be giving it any heroic effort.
This however is quite telling of where I’m at. A few months ago, i would have given it more of an effort. Before the blocks, when i couldn’t walk as I can now..I would have tried to put up with it for longer. Desperately hoping to get any ounce of benefit out of it. Now however, I do feel the changes ahead of me to be aggravatingly slow..and the work to be immensely tedious. But I feel like I’m at the point where the big changes that a drug might provide have come and gone and now it’s for me to get through the rest.
Granted, with minimal or no side effects I’d undoubtedly take the extra assistance a drug might provide. But as that is not the case, an ounce of cure traded for a pound of different pain..Not worth it.
Meanwhile, I stopped the gabapentin to try the Lyrica..and a few days after, my mood began to brighten. At first, I thought that it might be the Lyrica ‘euphoria’ side effect..But I stopped the Lyrica after a very short trial..and I still feel loads better.
So, it seems that I quite possibly was unknowingly was getting dragged down by the gabapentin. When I started it, I knew that it made me kind of meh…But I thought that had worn off and the drug was no longer impacting me. Now, I’m not so sure. And, now, I don’t want to go back to it just yet as I like having brighter spirits..
Granted in time, i probably will go back to it – if for no other reason than to test it. But, for now, i’m taking a break from it as well.
i can definitely feel the pain increase from the lack of drugs – but given how much better things are then they were, overall, it’s quite dealable - and dealable enough to make me willing to stay off the drug in order to gain some mental clarity again. Meanwhile, I really do think the NAC and particularly the magnesium, have helped.
..i’m also doing heat desensitization and general foot desensitization..the lateral spot still has issues (which seemed to increase around the time that the midfoot pain increased), but they’re still way better than two months ago. i’ve also been using a plantar fascitis heel stretcher to attempt to do a passive stretch of my achilles.
All that said, perhaps the biggest change has been my mental shift..
As written, I was approaching this as an acute issue. Post-op…find the fix and resolve it.
It has reached the point though where, for whatever reason…my approach kind of went through its own natural progression from acute to chronic. Each change in the process perpetuated the future ones as it became more and more apparent that while the acute approach makes perfect sense and is extremely beneficial – to acute issues – it no longer applies here. And in fact was becoming more detrimental than helpful.
So, without any conscious effort, my brain has shifted its perception of and approach toward the situation to one of a chronic issue. And with that, came acceptance of the situation.
Thus the pain is no longer something to actively try to eliminate..it is now..part of how it is. And yes, at times..that sucks…but..it also…in the state of chronic, it is there – and no matter how much it sucks, it’s not leaving..And fighting it..apporaching it as one would with acute situations – ends up putting energy and struggles toward that which won’t change – while that energy could instead be used beneficially toward carrying on.
Meanwhile, just the simple pain perception shifts..in acute, my spontaneous response to a nerve pain spike is one of wanting it gone..aggravated..irritated..negative…Whereas chronic..it happens and it’s more ‘there’s my foot doing it’s pain thing again’..
The shift doesn’t really make a 6 or 7 feel better – they’re still a 6 or 7. BUT – the contrary is that the battle against it..the acute approach – that turns a 6/7 into a 7/8.
And, none of this is to say that I’m all ladeedah about what is going on. Earlier today, I was trying to walk the dogs during lunch and my midfoot was seizing up as it hadn’t moved much yet during the day – so it had the arthritic seizing plus the pain…combined into a solid 7…And my brain starts going with ‘why am I bothering doing this? yeah, great, i keep going and the arthritic seizing will ease..but then i just have this giant chunk of pain…or i could just stop walking and not have to deal with either..’
So – no – I’m not in ladeedah land..and I still get frustrated and have internal struggles over trying to push myself to continue despite the pain versus just wanting to stop because why ‘push’ to do anything that’s just going to hurt? It hurts..stop..go home and just be done with it..
Definite internal battles still exist..but there has been a baseline approach shift. And with that, a lot of battles have ceased..a lot of the feeling trapped/stuck in this state has diminished..the cane has become a part of me..and I do and will have to push myself to go to the grocery store – when my natural inclination is to not bother..not even try to walk through it..it hurts..i’m tired of hurting..done with hurting..if i don’t HAVE to do something painful, i’m done pushing through it..I now avoid walking the dogs, instead resorting to throwing the ball..I avoid walking into any store that has a drive through..
I used to love love love walking. I found pleasure in it..the motion..the scenery..or at the very least, the lack of stagnation. Now however, many times it falls into this pool of pushing through the pain to keep doing it for the sake of doing it..because i don’t enjoy it at all any more. And that, in turn, leads me down the path of avoidance.
In my heart, i know why I push – I want what I once had. And I do believe that if I want to get that, the absolutely worst thing I can do is become immobile. That not only guarantees I won’t be walking as I once did- and never again will enjoy it – but that my sensitivity will increase..My pain will increase..The respite of sitting on the couch will begin to lose its protection as the pain will begin to once again encroach upon all states of being – including fully no-weight-bearing resting…
So I do it because I know that if I don’t, i will rapidly decline. But just because i know that doesn’t make the temptation to give in..give up..stop pushing…any less.
I have a lot of issues that have increased..a lot of avoidance going on..And a lot that I need to address and work through..But a part has shifted – a part that is no longer waiting for the pain to leave so i can get on with my life.
It’s now time for me to get on with my life. To start trying, inch by inch, to go to the fields and walk..
I just have to take the pain with me.
Time and again my postings and my mind come back to the same concept – that I’m struggling to keep my head up about it all. And, it’s been that way since around the time I was told by multiple doctors that I simply needed surgery.
So, on the one hand, there’s some good in that – it means that I keep bouncing back - after all, I couldn’t get pulled under ‘again’ or be trying not to get pulled into it were i not above it at other points..So, there is that part of me that perseveres time and again..
At times I reach points of outright positive – points where I see the progress made as great and don’t just dismiss it as so much of it was a direct result of the blocks; instead, just seeing it all as progress..And other times..most times…when I am more neutral…Similar to the glass neither half-empty nor half-full..just carrying on…keeping up with an hour or so every day of PT stuff…I just am..I am quite limited and the pain and issues walking significantly modify my daily and weekly tasks..but I just…try and do what i can and keep going.
But then, time and again, I get sucked down about the state of things – or simply struggle against getting sucked down..Which is inevitable..there will be times that i will get down about where I’m at versus where I want to be..where I thought I would be. But – I feel like I need to come up with some ways to decrease the frequency.
There’s the usual ‘getting down’ doesn’t solve anything, I’m not doing myself any favors, etc etc..But well beyond that is the fact that time and again, as stated, i struggle against it – struggle to keep my head up – and that takes energy; energy that I could be using to push further.
So, I’ve been contemplating methods to assist me in keeping positive about it all. I was thinking about creating lists – milestones..things i can do now that i couldn’t a month or three ago…something to look at when i start to feel the pull..But I then started looking at my notes where I’ve been keeping track of things such as the speed I walk each day and the amount of time I walk for and discovered that…I’ve increased my speed by .2mph and about 5 minutes in the course of a month.
It’s all relative, of course. If I were running a marathon at 10mph and upped my time by .2mph in one month – that would be unbelievably amazingly wonderful.
However, if I were just trying to walk and hadn’t even reached a 2mph mark (half of my prior baseline gait)… .2mph..doesn’t come across as quite so wonderful.
I was in decent spirits when I looked at it, and yet it still..wasn’t a helpful, inspiring thing to see. The one thing it did make pretty clear though is that no list or chart is going to help in the slightest as long as my expectations and hopes are as they are…As long as I am looking for progress – measurable, distinct progress, I’m going to keep struggling. Over and over again.
Which isn’t to say that I can’t look for change..that I can’t keep track of things and write down milestones in an effort to keep my head above water. All of those things are great; but when the milestones are “in the last month, i am now walking .2mph faster on the treadmill”…when one is looking for a milestone such as “no longer using handlebars” or “walking 1mph faster” or even “.5mph faster”..something that until now, I’ve seen as a reasonable expectation…well, disappointment and depression are pretty much guaranteed.
So, I’ve come to realize that I truly need to adjust my expectations and goals..I still do and will forever have the same goals – I will be tromping around for endless miles..I just need to adjust the timeline..I *really* need to remember that any movement forward is movement forward..That as long as I am making progress – no matter how slow – it means I am getting there. It might take an incredibly long time, but it will happen.
That concept alone can be discouraging..But I guess what I’ve begun to realize is that things aren’t dandy…they aren’t ideal..but they also aren’t short-term fixable at this point. However, they also aren’t an end-point..
And since it’s not going to be over tomorrow ..or next week.. or next month.. I have to stop the cycle of getting dragged down by it..I Have to alter my expectations…I Have to remember that I am going forward – and I Have to remember over and over that no matter what, as long as I’m going forward – no matter how little – I will get there.
I seem to get down after my weekly appointments at the pain clinic…I’m trying to figure out why.
In part, things are unbelievably better than they were a month or two ago..Conversely, I attribute 98% of that purely to the magic of the nerve blocks..As all the crap i do for my foot every single day, it at best seems to be perhaps an inchworm of progress. And that’s an inchworm that took so very much energy and effort to produce.
It’s not just that it takes a lot of time or energy to do x, y, and z..there’s the emotional factor..The fact that every time I start to get down about it all..every time I want to give in..don’t want to do the pile..Every time I start to get pulled under a bit about where I’m at versus where I once was/where I long to be..Every time I say ‘screw it’ and try and carry on regardless – go out to the park and walk through it with the dogs only to discover that just because I said ‘screw it’ doesn’t mean anything real..it just means that I’m now at the park discovering how painfully long it takes for me to walk across it..and at times, how painfully painful it is.
All of that adds up emotionally. All of that takes a lot of energy to get through..to push past..to carry on..
And even though I get through, push past, carry on, it still adds up. And it adds up even more when I have to invest that energy over and over only to inchworm.
So, I go to the pain clinic for a variety of appointments each week..and each time I leave, I feel somewhat crushed..Even if I entered in good spirits..even if the day before I was fine – better than fine, my attitude was one of coming to terms and being okay with it all..but I go in there and leave with part of the rug missing beneath me.
And I wonder why..
The people there are all nice..I don’t see the original MD, just the anestheseologist/physiatrist and I think he’s great..I really like the PT person…I saw the psych person once and have another appointment with her in the upcoming future..I like her a lot too..
So it’s not like I go in there and they tell me crappy things..
I mean..I guess in some ways they do..When I saw the psych person she had asked if I was hiking again and that question cut deeply – that someone could be hiking again..that that was even a plausibility…which salted all the more the fact that I was so far from taking the dogs to our basic/quick 1-2mile, boring, flat field, let alone going for any version of a hike..
And once when I saw the PT person she said matter-of-fact that of course I’d never run again – which, I thought I’d come to terms with and accepted – but apparently I’d yet to do so fully as that statement hit – and hit all the more as it was so transparent to her that it was of the mindset that it would be obvious to me to..A spoken point blank fact. But in my heart, it was anything but.
And now, I inchworm…and yet lately, my foot seems to be backsliding..My midfoot seems to be seizing up more and more with greater pain – which means that my walk is turning quite lurchy…I’m still able to do a heel-toe push-off..But if the progression continues, I won’t be able to soon enough.. In other words, i question if the block’s magic is diminishing.. and that hurts all the more as the theory is that I do all this work and the block diminishes and I’m still golden since I did so much..put in so much..So to do all that for relative naught..I have a very hard time with that. And each time I have any bit of an internal struggle..an internal whine..a desire to just stay immobile and elevated..my push-back weakens its resolution as the only thing it has to back it is that I am going forward. So when despite it all, it seems I’m slipping a bit…I struggle.
But that in and of itself is unrelated to the clinic..
I did ask them today – both the doctor and PT person – what their take was…I know they can’t give a black and white answer but I was trying to get some idea of what the goals are here..what I should be anticipating…where we’re at… I mentioned a ‘for instance’ perhaps I’ll still be using a cane in a year and i need to just accept that now…and the PT person said that she doesn’t think I will..but a few months, quite plausibly.
And I asked..Don’t ask what you don’t want an answer to..
Somehow though..a few months is short. In the scheme of things, fine. Whatever..But at that moment, it brought tears to my eyes..Which return again as I type this.
I’m just tired. And I want it done.
And I know that some people are crippled for life…And that I’ve made such progress etc etc etc etc etc…But I just…When I first went to the pain place, they talked about me going to the clinic for 8weeks..So I asked her about that as well..I guess I had it in my head that they felt that at 8weeks, I might still have some pain, but things would be mostly settled – and I’d be hiking again. (Thus most of the ‘some pain’ would simply be from my learning the limits and…just generic have to accept that if I want to go 10miles, by 6 or 7, my foot isn’t going to be my biggest fan. – but that I Would be fully hiking by then..) But, as she said when I tried to get an idea of what to expect – I won’t be better in 4-8 more weeks…It’s just that I’ll be switching to more of a check-in appointment schedule..a monthly update that offers suggestions/etc based on the progress of the month..whereas the first 8 (or 12 as she added on) were to build a foundation of sorts..
And I get whiny..And I want to throw things and scream about how I don’t want a fucking foundation, I just want this done.
…I saw the doctor after and got to ask him yet more questions. He gave a multi-layered answer to a question about CRPS in remission vs. cure; one piece of his answer was that CRPS can’t be psychosomatically created…I hadn’t asked that – before or this time…but that statement was inserted with others nonetheless..and that one statement of course stood out to me – even if it fit in context, it meant so much more to me than the subject at hand…and though I’ll probably hold some self-blame for a long time to come, it did eat a piece of it.
He also said that if one were to see me now versus a month or two ago, they would probably question the CRPS diagnosis – but to him, he has no question at all..That it makes the diagnosis all the stronger – that I do have it and am being treated for it..And the treatment is working..
Which, is a good thing – well..the improvement part is..I know that if I went to see someone now..as-is..walked in to another pain clinic..no one would give me such a diagnosis as-is..My pain is nowhere near what it was..my coloring is a million times better..my feet are the same temperature..my hypersensitivity is tons better..I’m walking half-way normal with a cane if I walk VERY slow..(and now walking very lurchy and odd if i go any faster than about .3mph)…And again..here I am whining when there is sooo very much improvement..And I really need to remember this stuff..But again…I see most all of this as attributed to the blocks..not the effort..BUT…like i said to him…I feel like I don’t have a choice..I’ve seen how quickly it deteriorates if I let it…I was positioning my foot so it wouldn’t touch things..Then only sleeping in certain ways to prevent it from touching the elevation pillow..then not wanting the cover on it..having to have a sock on it at all times to prevent it from getting touched/bumped by any other blanket/pillow/anything…the water in the pool started to bother it when that was once my safe-haven…I saw it going downhill..and I know that the only way to prevent that is to keep pushing…Even if it is inchworn, it is going forward – and if that doesn’t happen, if I don’t keep going, it WILL go back..and do so rather quickly..So I don’t have a choice..
I know this…I’ve seen this…But when one gets tired of pushing, some days it’s hard not to give in and let whatever happens happen…
I also asked him what the goals were..Based on prior conversations with him/them/I don’t know…I really thought that one of the goals of present time was shooting more for remission..Or at least remission with occasional flare. His stated goal was a reduction of pain by 50% – which is so very different.
He said that he thinks we’ve accomplished that – and, if the block holds, then I do too. Unquestionably.
But I guess, I had it in my head that it was still early..that because it was early that we were shooting for hit it hard and get it to stop..Not apply treatment and hope to meet it half-way.
He said a few other things such as ability to do normal tasks in the community with an assisted device. Which…Something’s better than nothing? Maybe. But some times..it’s not.
What he was saying also leads to the chronic versus acute discussion…I talked to him a month or so ago about the concept that it was acute so take it down now before it becomes normal…His answers now were..they were the answers you give a chronic person. And I wasn’t prepared for that.
Again though..I asked.
Either way..that was this time..and maybe it’s just that each time I go, some question gets answered that I wasn’t prepared for…Maybe it’s that each time I go, there’s a ‘status check in’ of sorts…When I’m home doing my thing, the days can go by and the inchworm isn’t as apparent..When I go there and find that as far as I can see, nothing’s different than it was last week than the week before..It hits..Maybe it’s that each time I go, there’s a little part of me that thinks ‘it’s a pain clinic’ and therefore they can fix me..that i’ll walk away healed…And yet, of course, I always leave the same as I was a few hours earlier..Maybe..
He had asked where I wanted to be and I told him that I wanted to be where I was pre-op..or better, pre-injury…That at this point, I had mostly accepted that I may never run again. But that I wanted to be able to hike for miles and miles..Or just walk for miles and miles..It’s all really the same, just elevation and scenery differences..If I can do one, I can do the other..
Looking back on that though..his face at that moment was distinctly unreadable. I can usually tell where he’s at on something. But that..he had a sheath pulled over; which in and of itself is enough of a tell that I want to ask him..perhaps I’m misinterpreting..But you’d think I’d have learned by now – I shouldn’t ask if I’m not prepared for the answer.
I keep saying that I’m going to start writing in a different blog, but..well…for now, I’m sticking around..
So, an update of sorts..mostly though, just a journal/reminders for myself as I go forward.
I did some gardening yesterday. The first time I have done so in 5months. I wore the boot as it was that or walking like a hunchback from a Bela Lugosi movie..dragging my leg behind me with each step..But, the fact that i did that – something that was really not possible a month ago..particularly that i did it and stopped about an hour later – not because of pain, but because my yard debris bin was full..That’s progress.
So very, very, very slow – but progress nonetheless.
And I think that’s something I need to keep in mind – I am making progress. It is hideously slow -slow enough that it’s easy to forget that I am going forward..and slow enough that it’s easy to get bit by depression, feeling like I’m stuck in pain and immobility..but those feelings are based on expectations of a speedier recovery..When looking at start to finish – I am going forward – and thus the feelings are false..I’m not stuck..I am making progress..
It takes me 15-20 minutes to walk 5 acres with my cane. And some days I have to do the wedding march the whole way..others, I’m able to walk closer to normal – at times walking perhaps 2mph if it is on a flat sidewalk.
This of course is nowhere near my usual 4mph gait, but it is far far better than 1mph. And far, far better than needing two crutches to walk at all. (For which, I still am so immensely grateful to the physiatrist/anesthesiologist for the nerve blocks..if it weren’t for him……)
My non-cane walk is far worse than my pre-op (with brace) walk. As mentioned, I truly look like I belong in a cellar next to Dr.Frankenstein…But I am closing in on being equal to how I was immediately pre-op..Which – my ultimate fear was ending up worse post-op than i was going into it..which if i end up equal..it stinks, but it’s better than worse!
I’m not equal yet..more and more, I have the original pain – plus the nerve pain..But there are days that the nerves are far more settled..days where I need to grab everything my body will give as who knows what the next day will bring..
And there are the next days – the days where I struggle to not get absorbed in depression..the days that it takes 20minutes to walk 5 acres – the whole time it’s a painful struggle – which makes me struggle with misery as I wonder why bother..why I’m even trying to walk this bit when it’s just painful and a sore reminder of what i once had..such walking used to be nice..used provide relief when getting down…but on those days that it is just a struggle to get across a park..it tends to pour salt in a wound.
But on those days, i need to remember that the days come and go – those days suck..tomorrow might be better..And i need to remember where i was a month or three ago – when such a day would have been a blessing.
Granted the comparison is still tough. In a year or two, i might be able to pull it off. but for now, when i attempt any such ‘keep going’ argument, my brain *immediately* counters with the fact that dandy – i’m better than i was 3 months ago..fine what about 6 months ago? I’m nowhere near better than i was pre-op..
And, that counter argument..makes it hard to hold my head up.
But it also serves no purpose as..i had surgery. i know why i did..heck, looking at the pre-op ankle photo i posted, i can see why i did….either way though, it’s done..i’m worse right now than pre-op..well…i can’t change that..all i can focus on is that i am moving forward in my post-op recovery. and hope/push for that some day i will truly be as good as i was pre-op if not closer to where i once was when the issue first began..
I’ve also found the psychology of pain fascinating from an objective perspective.
I may have days that 2 months ago would have been a blessing..but those two months have worn my spirit..thus sometimes, those day..I just get whiny..so very very sick of the pain..
I don’t care that it’s just a 4..I don’t care that I actually might have periods where, when my foot is elevated, it’s not even a 2…where at worst, it feels heavy and weird and perhaps has a soft buzzing..
I just want it done..want out..want it to be over..
So, i find it interesting – that this pain level that once would have been a blessing can now provoke an internal hissy fit. All because of time…There is no shift in the pain itself – only shifts in how I perceive it. Even to the point that what once might have been a 5 at times can now be almost a 6 – simply because I feel like i just can’t handle it anymore..so sick of it..
But that goes back to the whole acceptance thing again..during those times, I find myself struggling against the pain..Fighting it..Which, were it acute, okay..but, were it to shift into chronic..I have to shift my attitude toward it as.such a struggle only takes more energy..Only pushes the previous 5′s closer to 6′s..
On the good days, it’s great to look at how much I can do today compared to how I felt a month ago..But on the bad ones..On the bad ones, I really need to just let that day be that day..Crappy day? sure..and maybe on that crappy day, i stop pushing myself to walk more as it tends to feed misery of that day..Or maybe i keep walking and push my attitude to adjust – to accept that it takes 20minutes to get across the park and..I’m going to keep doing it because tomorrow or the next day..one of these days, because of my pushing, i will get better..I don’t know.
Either way – on those bad days, I need to detach from the comparisons as they only make things worse..Need to just let that day be that day..and yes, it’s a bad day..yes, i’m in more pain..my nerves are flaring/whatever..but..so be it.
Struggling against it only makes things worse..It doesn’t make the day better. Doesn’t make the pain less..
It’s hard sometimes to not struggle – particularly in more of an acute state..in an acute state, there is an immediate, natural, and often beneficial struggle..X hurts + find Y to fix it = X stops hurting. But, in the chronic state, X hurts..and it will hurt.. Y can sometimes help..sometimes not…but to focus on Y means
X hurts + try to find Y to fix it = X hurts + a lot of time/energy expended on X and Y = X hurts (often perceived as more pain than it would have been without the struggle) + energy is drained + emotionally downtrodden.
So, I get that..but the logical understanding doesn’t always transfer into the emotional response..So, for now, something for me to work on.
I still push for this being acute..I am clearly walking the chronic line..But I still hold onto the acute realm. Nonetheless, at this point, even in a partial acute state…It would do me good to respond/work through things with more of a chronic approach..Even if it may be relatively acute, for now, X hurts…finding Y isn’t going to automatically fix X..it will still take a long time..
I also find the psychology relation interesting in the realm that as mentioned, I can get stressed about work, and when that instance occurs, I can feel my nerves begin to respond..It’s almost as if they have taken on part of the typical sympathetic response to stress…The usual fight or flight that is instigated in stress – even a subdued level – altered breathing, heart rate, etc…It’s as if my nerves are locking into the sympathetic system and with that, stress can result in all the usual responses + nerves buzzing/biting/catching fire..
Granted, this kind of falls in line with ‘sympathetic pain’. But my understanding of sympathetically maintained pain (which of course could be wrong) is more of the sympathetic system hijacking the relevant ganglion(a) / dorsal horn /whatever spinal nerve center is theoretically involved … to the point of overriding any signals from the brain while it in essence ends up creating a self-perpetuating pain loop.. Whereas this – this is more…fully involving the brain and all functions as a normal process.. When something happens and one’s pupil’s dilate/they blush/their heart rate increases…all of these things are part of a standard response system – no hijacking – no loops – completely normal..Thus it’s almost as if the nerve response somehow interjected itself into the ‘normal process’ stream.
On the downside, lately it has felt like my foot/ankle have begun to seize up again, making walking more difficult.
I am hoping this is just temporary – and if not, i’ll get another block and carry on…But its presence does introduce a bit of a mental block when spending so much time/effort to move forward and still have steps back..
I also talked to the surgeon’s office about extending my FMLA coverage (I still have FMLA left as I’ve been parsing it out for pain clinic appointments). The assistant I talked to first said that you only get 12 weeks in one chunk – which I tried to explain that no..you can work part time under FMLA – it’s not full days or nothing. (Which is how I still have time left)..
She also said that they wouldn’t give me/extend disability and appointments didn’t fall under disability – which I tried to explain that I’m not referring to disability – just FMLA..just basic protect my job coverage..And the need for a chunk of time for multiple, repetitive medical appointments do fall under it..
Mind you, i wasn’t arguing…if anything, quite the opposite as I was in a submissive position, asking for assistance.. I did however want to make sure that the rejection given was given with the understanding of what it was that I was asking for..
She then stated that there was nothing medically wrong with me and I shouldn’t still be in pain..
That one hit me a bit as…I kind of felt like the surgeon fucked me up and then ditches me after saying there’s nothing wrong with me and I shouldn’t be in pain still, so I’m fine..deal..?
And that was just an emotional response..and I know it’s not the case..if anything, as mentioned, I blame me…I blame me for my tremendous anxiety about the surgery which I feel that if there is one to blame/anything that I could point a finger at as a cause/prevention of my outcome, it would be that my pre-op anxiety levels = my sympathetic system on high alert = …. I blame me.. I blame me for being worried about nerve issues and having somehow done a self-fulfilled-prophecy – turning my fears into reality; even though at the time, I didn’t know enough about nerve pain/CRPS to have done so.. I blame me for never listening to my body and forcing its hand – if something is serious enough that i have to stop, it has no choice but to go 110% full force in order to get me to pay attention.. ..if there is blame i feel, it’s self-directed.
And b. this surgeon has been wonderful..I still love him and would see him again for future surgeries (which will hopefully never happen!)..but…It hit me like that nonetheless..
Meanwhile, she knows I’m going to the pain clinic..Don’t know if she knows their diagnosis..Regardless..She probably didn’t even mean it like that – was just trying to say that surgically, I look fine..
But..what happens when surgically you look fine….structurally you’re lovely and..you’re in pain..things aren’t fixed??
Right now, I’m relatively lucky – I’m working from home/foot elevated.. But if I had to work on my feet..had to go in the office with my foot down all the time…had to be around people all the time and couldn’t get away with possibly taking something or spending a few moments with my foot to try and get it to settle..I would *have to* go on disability..And what then? I have someone who won’t even extend my FMLA because I “should be” fine..and am “not disabled”…?
To get any kind of disability pay from insurance or other, you simply have to have the doctor’s support..so to not have that because their policy is 12 weeks and if you’re past that and are structurally sound, you’re out of luck??
And, there also is the fact that hearing that I shouldn’t be in pain from the place where – again – emotional response to it is you fucked me up – reality/logic aren’t even close to that…but to hear at all, let alone from them that i shouldn’t be in pain..jolly good..i *shouldn’t*** but I am!!! You get to carry on with your day, same as always…I don’t..So you tell me that I shouldn’t be in pain? At this point…an internal part of me simply responds..fuck you.
And, as I write this, it clearly bothers me some as my foot’s nerves are activating..Objectively fascinating…Subjectively…argh!
But, yeah…emotional response versus reality…not always the same..and I like the assistant who I was talking with, so…90% of my emotional response was in line with reality..but the other part..the part i kept inside..was..emotional :)
Other than that..my insurance is denying Lyrica for me right now, stating that I have to try tricyclics and gabapentin first..It is so unbelievable to me that they can do that..Even that they could say you *have* to try anything else first…But..to go beyond that and have multiple requirements..If they demanded you took the generic equivalent (i.e. pregabalin) if it were available..but this..unbelievable.
Anyway, time goes on..
And recovery continues..Looking back, I no longer have the crunchy shooting pain I initially had in the ball of my foot when I first started walking…my heel which once felt like it was missing layers of skin is normal..there are a lot of changes..it’s easy to forget as it is so very slow moving..but they are there..
And at times I wonder – they say I shouldn’t be in pain..that I am way beyond the realm of ‘normal’ pain/recovery for this situation…hence leading to the CRPS diagnosis..but how do they know? Sure there’s an average..There’s an average for everything. But who’s to say that I’m not just horribly behind the curve – though still on the same chart?