Does Botox Work for Stroke? A Holiday from Botox and Baclofen

Does Botox Work for Stroke Spasticity Treatment? A Holiday from Botox and Baclofen

As I sat in the busy waiting room of the Neurology Center of New England for the 17th round of quarterly Botox injections in my arm, calf and quad since my stroke over 5 years ago, I pored over the bulleted questions I had drafted for Dr. Salvatore Napoli on my phone's One Note app. Dr. Napoli was running behind. Vivian the Nursing Assistant took my vitals next, and I was pleased to see a low BP of 115/62. Back to waiting.

Shortly after, I went into the exam room, and Dr. Napoli was his usual effusive self. "Musa!  How are you?" What's new?" Then he proceeded to apologize because Cigna hadn't sent the right dose of Botox. I told him I'd received a letter from Cigna saying they had approved  Botox for a year. I then told Dr. Napoli about my doubts regarding the effectiveness of Baclofen. For some reason, the request for a new Baclofen prescription from Express Scripts took longer than normal, and I'd waited till the last minute anyway. I'd called Nancy, the awesome quarterback (she hates football) of all things out front, and she took care of it last week. I was quickly running out and was tracking the medications online on their trip from Arizona up to New England, but the weekend put a damper on things. I knew I could get a short-term supply from Walgreens around the corner, but I decided against that. So I tapered my dose from 12 to 4 a day towards the weekend, then about 2 a day from Saturday to Monday, resuming with 12 on Tuesday when they arrived. I thought it odd that I had not felt any ill effects or increased tone or spasticity. In fact I was continuing with my activities of daily living (ADLs) as normal. I was getting reasonable finger extension in the pinky, index finger and thumb as usual, more than the ring and middle fingers. I had also researched Baclofen withdrawal online, I told him. Plus, I recalled how we had kept increasing the dosage to the point we got to, while I was looking for the effects to show, and he had said we could go as high as possible until I felt too much fatigue and other negative effects.

Dr. Napoli then asked if I'd noticed that the Botox was wearing off. I told him that since we started the injections 16 quarters ago, I'd never seen that effect kick in about a week or so after, as was to be expected, so there was nothing to wear off. He asked if I knew about the Baclofen pump. I said I did, and we'd talked about it before, that it it was implanted and administered intrathecally (through the spinal cord). I asked about the Botox alternative he mentioned before called Dysport.

We discussed occupational therapy with Maureen, and I told him she was great, but at $50 per visit, it was not tenable for me. I'll continue exercises and working in the gym 3 times a week.

I learned a new term: my affected side is 'hyperreflexic,' meaning it's more jumpy than my unaffected right side. After watching me walk in the hallway and examining my reflexes, strength and tone, he suggested given what we know, whether I shouldn't just go on a holiday from both Botox and Baclofen. I agreed and didn't see why not. I live just 5 minutes away, and could come in on short notice if need be. 

I told him my insurance would also be changing, so we'll see what happens with a new plan, but I'll try and replicate what I have now.

So there it is... for the first time in over 5 years, I'll be off Baclofen, and for the first time in 51 months, off Botox. He'll see me again in about 8 weeks. 

I told Nancy all about it on the way out, and in her sweet, affable, grandmotherly way, she said "Are you sure? well he's a doctor and he knows what he's doing. You've made so much progress, we don't want to backward!" I agreed, reminding her how I had first been wheeled in on a wheelchair back in February 2012. No, we're going on a holiday, but we're not going backwards.