Sunday, October 5, 2014

Sunday Stroke Survival~ The Email Box

I've gotten over a dozen emails about Botox in the past month. Most are general, but a few get very specific in details. First let me clarify something, I'm not an expert on Botox use for spasticity.

Do I have spasticity, yes. Do I receive Botox injections for spasticity due to my stroke, yes every four months.

I may have the answer you are looking for or maybe not. When it comes to Medicare or Medicaid paying for the procedure, I can only offer suggestions and WAGs (wise a$$ guesses). I have limited knowledge how these programs work and their parameters. I do know that stroke survivors are receiving Botox injections under these programs, but the details on how they got approved is a mystery to me.

I was denied for both programs and depend on my private insurance to pay for my injections. I do know the neurologist and I had to make numerous telephone calls and faxes of reams of documentation to get approved. The process took months.

How many injections and the amount used is also a mystery. I depend on my neurologist for these finer details. She has taken the course work and has the knowledge. I don't second guess her, but offer feedback to which area was helped the most or least.

For example, she injected 50 cc to try and control my ankle and foot spasticity. The results of those four injections was that it worked too well. My muscle tone and spasticity disappeared totally. After two years of fighting and adjusting my walk and stance to these issues, when they disappeared totally, it became a fall hazard issue. After discussion, we decided to work up to total absence of of spasticity.
For the next round, she cut the dose by half with the plan of upping the dose in future injections. This will allow me to strengthen the muscle without falling. Falls are a fact of life after a stroke, but it is never a good thing.

I can only speak for me and relate the details of my experience. It was once stated that it takes twenty years to be an expert. Hopefully by then, scientists will find the cause and the cure for spasticity. I doubt it but remain hopeful. Right now, they are wasting time and money defining it in its various forms. I've read quite a few of these research papers and can only say, "DOH! I could have saved time, money, and told you this." Anybody that experiences spasticity can.

That being said, not all spasticity is alike. There are varying degrees and different muscles involved. While mine is considered severe, yours may only be severe to you. There are a dozen questions or so that determine this. How well you can move spastic limbs is the first one. I've had my contractor, military, and fireman sons in law try to move my elbow or open my hand while in the throes of full spasticity and they can't. It just won't budge. I've had grandchildren (16-2 years old) hang on the arm when the elbow is spastic and it holds them up. I will fall over before it moves. That's how frozen my arm gets. It plays havoc with my shoulder that does move but can't between the bicep and pectoral muscles.

Yes, I can talk about how my spasticity and Botox affects me, but that's it. I am no expert on the subject. But I have a feeling that I could be before it is resolved.

Nothing is impossible with determination.


  1. I know that if my spasticity could be eliminated the rest of my motor recovery would be a piece of cake. I don't think I have enough brain capacity to be able to send relax and contact signals simultaneously to two different sets of muscles. I'd rather be totally flaccid which goes against Peter Levine ideas.

  2. {{{hugs}}} you need them after fighting the red tape to get the botox! God be with you day, Jo.

  3. Sorry you have to endure shots that only help but don't cure. You'd rather deal with a limb that doesn't freeze now rather than later.

  4. Dean, It's like my ankle. I can get a dorsal flex but the foot inverts or I can evert the foot and the foot drops. I can't get it to do two things at once either. The same goes for my arm. I think I'd like total flaccidity for a time to see how the other half live.

  5. Zan Marie, As always, your hugs are greatly appreciated.

  6. Alex, The good news is that the more the shots work between spastic moments the better I can work on the weak muscles.


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