Sunday, August 20, 2017

Sunday Stroke Survival: It's a Go-No Go

Frustration has set in this week for me. I met with the neurologist about possibly getting a Baclofen pump to ease my spasticity instead of Botox. He told me very bluntly, that to get enough Baclofen into my spine to make the arm work again I'd never walk again. What a trade off! I had to question (about 2 seconds worth) if it was worth it. My mobility is just as important to me as getting arm function back. Granted the Baclofen pump would improve the spasticity in my lower leg and I might eventually be able to get out of my AFO and improve my mobility. It would also stop three of the medicines I take now for the spasticity, dry needling, and the Botox in the leg. It might even reduce the constant, painful cramping in my arm.

This week, I hooked grocery bags filled with a gallon of milk and about ten pounds of other groceries on my affected arm and it didn't budge! That's how bad my arm has gotten. The only time it straightens to full extension is in therapy with dry needling with electricity exhausting the muscle and the PT using a good bit of his strength. That's once a week and it only lasts for 30 minutes.

Just how bad do I want my arm function back? It wasn't the fix I hoped it would be. We discussed other options... rhizotomy or peripheral neurectomy, and central ablative procedures, such as cordectomy, myelotomy, or stereotactic procedures. The one that seemed to offer the best hope was selective rhizotomy. All surgeries carry risks especially for me with my heart condition. The other consideration is that they are all considered a permanent means of getting the results I want. There is no going back and reversing what has been done.

Not that I don't trust my neurology team, I do. But I asked for a referral to Shepherds Center. They ARE the best in Georgia for spines. They rebuilt part of my spine for me a quarter of a century ago. I'm weighing my options carefully. If anyone can tell me the ins and outs of any procedure and the best outcome, it's them. I'm still waiting on the appointment with Dr Taubin, their spasticity specialist. I should hear some time this week. In the meantime, I'm doing research. With the last increase of Botox not changing anything, I'm looking for alternatives.

Nothing is impossible.


  1. This is such a difficult dilemma. I really feel for you.

  2. {{{{{hugs}}}}} That's hard, Jo. I hope it works out for the best.


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