Sunday, July 9, 2017

Sunday Stroke Survival: Time for a Change

I wanted to ask y'all some advice. I've been on a Zanaflex, Baclofen, Botox, and even valium regime since my stroke for high tone and spasticity. They have even recently upped the dose to 500CC of Botox with the extra 100CC going into my arm. Needless to say, I've spent a small fortune on this. But still, the spasticity level and pain it causes is increasing. All of this is beginning to feel like a losing battle and I hate it.

Before my spasticity progressed to moderate, and then to severe, I had voluntary movement of my elbow and two of my fingers. Now, even with all of this and weekly dry needling sessions, I can't  extend my elbow and have nothing voluntary in the fingers at all. My ankle no longer supports me without inverting. According to my OT and PT, I'm doing everything I should and can do. I've hit a major frustration point in this. I feel like I'm up against a brick wall and can no longer chip away at the mortar holding it together.

Is it time for a change???

What works for others with this condition? I understand this neuro-spasticity  is a mystery. My therapists and neurologists have talked at great lengths about the subject. I'm not taking just their words for it either. I've done quite a bit of research on the subject myself over the years. A lot of neuro deficits from my strokes, I can fight to recovery from. But this part I'm having trouble with. I'd call it quits and be okay with it if it wasn't for the pain that goes along with it.

I live and want to live life to the fullest, and I can't do it in pain. Having fibromyalgia just makes it worse. Pain, any pain, is amplified ten fold at a minimum. I've dealt with my condition for over a decade. I discount my pain levels mentally with meditation and stubbornness.I refuse to be held down and stop moving. This stubbornness isn't without its own set of problems. I do take everything slower on flare days, but I just don't lay in bed all day. I get up and do to the best of my ability in spite of the pain. In some respects I do not feel "lucky" that sensory nerves were not damaged by my strokes. I could honestly use some relief from all this hurting. But then, I also want to be a zombie taking this or that pain killer either. Aging hasn't helped. That in itself brings a whole host of other problems.

So I believe it's time for a change. After five years, there's got to be a better solution. I've been looking into baclofen pumps. Do any of my readers have one? I've got a few questions for you...
How long have you had it?
Are you satisfied with the results?
Would you do it again?
How weak does this IT unit make your functioning side?
How well does it work on your upper limb? Everything I've read said not very well. This is my main issue with it.

Having a pump is said to work better than the oral medication because it is delivered directly into the spine. This isn't a cheap option since the surgery alone is $30+K. The medicine to refill it has to be bought every 4 weeks (for a smaller unit) to up to every four months. It can cost up to $500 per refill. That's not my cost between Medicare and BC/BS. I expect to still pay out of pocket for some of it though.

I'm not a vain person so having the unit bulge my abdomen doesn't matter. If it works...then it's priceless. I'm not expecting miracles here. I'm desperate.The decision is still at least five months away for me. It will be my Christmas present to myself for a happier New Year if I decide to do it. I found a neurophysicist, at Shepherd Center, that performs this procedure 45 minutes from when I live, just north of Atlanta, so commuting will not be a problem for follow-up appointments and therapy. Like I said I've been researching it for a couple of years.

On the other hand, maybe just change up my drugs. But in everything I've read, I'm already on the most common ones. With my history of drug allergies, that's a scary proposition. But also given my history with general anesthesia and my heart stopping, that's even scarier. Mind you, I'm not a 'fraidy cat. I have some serious risks, but risk factors are weighed against the my decreasing quality of life.

As I've said before, I was well on my way to full recovery of my arm and leg before the spasticity set in so bad. The dry needling even with an electrical current running between the needles only gives me about 16 hours of relief from the pain and only 12 hours of relief from the muscle spasms (done weekly). That's with Botox 500CC 4 times a year), and 3 muscle relaxers, at almost maximum doses, that I take daily. I'm just tired of fighting this losing battle. If something doesn't work... fix it!

Nothing is impossible


  1. {{{{{hugs}}}}} Jo, pain is a desperado. I've had Fibro for 49 years. Some days I want to scream--and have. I don't know how much more pain you have with the spasticity, but I know what intractable pain is like. All I know is that you have to keep trying to find your solution.

  2. I've never even thought of trying a baclofen pump - fortunately, my spasticity kicks in mostly when I'm cold, so it's not a continuous problem; except for my finger flexors - those are relaxed now only because I have continuously (day and night) stretched my hand open for 8 years, by using my right hand to open my left hand whoever my right hand is free and sitting w my left hand open under my thigh when my right isn't free, plus in bed at night, i interlace my fingers whenever I wake up in the night.

    I hope you find a solution to your pain soon. Hugs


I love to hear from you! Agree, Disagree, matter. Even if it's to say you were here.