Tuesday, February 14, 2017

To Try Botox Again or Not

So I've been going to a neurologist for the pain in my hands and feet. Because I also have chronic migraines the doc wants to know more about that too. He specifically asked if I had tried botox before. I explained that I had two rounds of injections, neither of them effective and I had a reaction to the 2nd round. He then started pushing for me try it again. He said it can take as much as 3 rounds to be effective.

I wasn't really in the right frame of mind to make a decision like this because I wasn't there to talk about my migraines and, while he is a neurologist, he is not a migraine specialist. But he went ahead and told his assistant to start the process with the insurance company.

The circumstances surrounding my first 2 rounds are a bit complicated. The first round was in the early months after it was approved by the FDA for use as a chronic migraine preventative. I received the injections from my migraine specialist at the Mayo Clinic. It was quick and painless but ineffective. Meantime, we're in the process of moving to St. Louis and my specialist tells me about a wonderful colleague of his he has known since medical school, who is also a migraine specialist in St. Louis. Some of you might know him as he has been active in the migraine community - Dr. Todd Schwedt.

I loved the idea of having a local migraine doc so I started going to him. It took several months to get the initial appointment and several more months to get the insurance company to agree to allow me to try it again. Of course, far too much time had passed for the first round to to help build up to a thearputic level with the 2nd round so we were basically starting all over again. This time it was administered by the resident and supervised by Dr. Schwedt. The whole thing took much longer and it was quite painful. I regret agreeing to let the resident do it.

Worst of all, I had a reaction to this 2nd round. For almost 3 months I constantly felt as though I was getting the flu whenever I would do anything. It was this extra layer of exhaustion that would kick in coupled with a low grade fever. I also got a red mark between my eyebrows that never went away.

Within a month after getting the 2nd round of injections, I received the terrible news that Dr. Schwedt was leaving Wash U/Barnes Jewish. Further investigation revealed that he had taken a job with the Mayo Clinic in Arizona and he was being replaced by two neurologist - neither one a migraine specialist. Between the reaction I had to the 2nd round and losing my migraine specialist I decided I was done with botox.

I do see how this might not have been a completely fair trial of botox. But I also didn't think it was worth doing more since I felt so lousy after that 2nd round. Even if it had been effective in helping with my migraines, which it hadn't, I'm not sure those side effects are worth a small decrease in my migraine frequency because it made even my migraine-free days difficult. I'm honestly not sure if I want to give it another try.

Right now I'm still working to figure things out with my hands and feet. I'm still feeling a bit overwhelmed by the additional pains and loss of functionality. I'm just not sure that I am up to dealing with additional limitations and side effects from the botox.

I've gone ahead and let the office help me investigate what the cost would be through my insurance. It's kinda expensive as you can imagine, plus I'll have an additional fee for administration of the injections.

Another misgiving I have is that this came solicited by the doctor. I don't know this doctor very well as we have only met twice and both times the main subject of our time together is the pain in my hands and feet. He is a neurologist and not a migraine specialist. He doesn't have much of my migraine history at all because he didn't inquire. He jumped rather quickly to asking about botox and seemed a bit pushy to get the process started. I am not convinced his motives are completely pure. And I certainly never would have chosen him to help me manage my migraines.

My gut is telling me something isn't right. I think the best thing to do is to listen to my gut on this one. I don't think I should let this guy give me botox injections. I don't think now is the right time to do a botox trial. But I'm still undecided about the notion of giving it a try again. Maybe it's something worth exploring further with a migraine specialist, another time.

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