Sunday, April 23, 2017

Sunday Stroke Survival: Spasticity and Botox Again

My next series of Botox injections is May 1st. So is it any wonder the effectiveness of my Botox is wearing out. I hope upon hope with each series of injections that the effectiveness will carry through until the next appointment, but I'm literally sorely disappointed. The spasticity returns full force weeks before the next series is due. Not that the spasticity disappears with the Botox, but it brings the pain down to a dull roar and the tightness into manageable levels where some movement is possible.

Keep in mind that mine is not the average spasticity that quite a few post stroke survivors suffer with. It isn't sporadic episodes, but a constant bane to my existence of living post stroke. It is classified as severe spasticity. There no cure or treatment that works 100% for anybody. Heck, they (the researchers) are still trying to define it. It's that different in everyone stricken with it. So there isn't even a sure definition for it.

But from my standpoint, it's clear as crystal that the muscles tighten involuntarily, and then cramp. These cramps can last from several seconds to hours. Of course me, being Ms. Abby Normal and Ms. Overachiever, the cramping has to go on for hours around the clock. The only thing that saves me from nonstop agony and crying is my dry needling sessions. Unfortunately, I would have to have dry needling three times a week to keep the spasticity from worsening when my Botox wears off. I'd be in debt up to my eyeballs at $45 a session during these periods. I think even Bill Gates would have a problem with this kind of bill looking at the expenditure for the rest of his life. I'm not a spring chicken or even a fall hen any more, but still I have quite a few years left in me. I'd kind of like to live out my life as relatively pain free as possible without being drugged out of my gourd, wouldn't you?

I'd love to not have needles poked into me up to a hundred times a dry needling session also, but it's one of those love/hate relationships. It's where you tell the physical therapist to "hurt you good" so you aren't in continual pain from the spasticity. It's almost like a sadist/masochist relationship where no sexual pleasure is derived just pain relief.

My inside elbow after dry needling
I'd love not to look like a junkie (drug addict) from all the bruising that can be the results of dry needling too.  Within hours my arm will look like pictured. After 24 hours, all the nice black bruising is evident. Yes, I ask for it. Heck, I'm even paying for them to do it to me. How desperate is that? Like a junkie I have to have my dry needling fix to keep moving.

If there were one drug I could take to stop this cycle, you know I'd be the first in line for it.

But there isn't one. So I accept this treatment as a last resort. It's the only way I've found that works and keeps me moving. If it wasn't for the spasticity being so bad, I'd almost have full movement again. I can voluntarily straighten my elbow, open my right hand and straighten my fingers, with strong concentration, with the full Botox and dry needling. From week 2 after Botox to week 4, I can do this. It's slow going but I have voluntary movement on command. But I gradually lose function after that. As you can imagine, I work the Dickens out of my arm, and fingers during that time in the hopes of strengthening my weak muscles to combat the spasticity. For the past two years, I've been on this cycle of excitement, and then frustration. But still I'm fighting. It is tiring. Frustration does get the better of me, but I keep at it.

My inverted right foot and foot drop still makes walking difficult. After two years of dry needling I haven't progressed farther than one step without my AFO, but I'm still working at this too. I've noticed that the calf muscles have decreased in size over the past year. A loss of muscle mass is always concerning, but it can be gained back with time. My right calf is about half the size of my left. It's not because I don't work both calf muscles, I do. It's because of the AFO. Only half the support of my body is actually done by those muscles. But then again, I've always had very muscular thighs and calves from weight lifting in the past too. I may on occasion lift 50 lb bags of feed now, but it is a rarity rather than the norm these days. I've got a Mel for that.

I'm just going to have to work my right side more to build the muscles back up.You've heard of the One Hit Wonders? I'm a One Step Wonder. The ankle is weak and wobbles. My foot will actually bend and be locked into a greater than 70 degree angle of supination without the Botox and dry needling. Oh, and my toes? My big toe will point straight up and the rest of my toes will curl under. Try bearing weight like that! If it wasn't for my knee and hip being artificial already, I'd be worried about the continual strain they'd be under. Even so, my muscles holding these joints are strained with every step I take. Does this stop me from moving under my own power? Nope! I'm enjoying every moment I can on my own two feet. Every day I try standing and taking steps without my AFO. One day, I might just be surprised and take off.

Until then, it's Botox and dry needling.

Nothing is impossible.

3 comments:

Rebecca Dutton said...

For several years after my stroke my ankle would invert without my leg brace so I know how scary this feels. Your persistence is amazing.

Alex J. Cavanaugh said...

So frustrating those are the only things that even partially work. With all the advancements in medicine, you'd think they'd find something that worked better and would help you advance toward full recovery.

Zan Marie said...

{{{{{hugs}}}}} for now and always, Jo!