I'm so sorry that a myectomy has been denied you - you must have been putting all your hopes into having that surgery and its been taken away from you, especially as you have a young family and a wife that needs you.
I have heard that some, who have had a myectomy, have experienced the dystonia moving down to the throat and neck - it seems to be if the disease can't access the beb muscles anymore, it looks for somewhere else to attack. It does sound like your doctor is aggressive in helping you, and denying you-especially with drugs, but its not want you want to hear is it? I can only imagine how you feel but do pray that you will receive the guidance you need to deal with all this. I hope others will post back to you with more help than I have been able to give. Take care.
June in Toronto(beb/meige)
Maybe a second opinion would be in order. Sounds as if you are having a rough time and I'm sorry. I had a myectomy several years ago and it has helped me considerably. I also have meige and also had it before the surgery. Before my surgery, my doctor tried me on several medicines, but nothing worked for me. They all made me sick. In fact, I ended up in the emergency room also because one of the meds made my heart race out of control. I don't remember which one though. I've never heard of the myectomy surgery causing dystonia to spread.
I do hope you find a better solution to your problem. Good luck to you.
Carol Brown, beb/meige
I agree that a second opinion is in order. I have had a myectomy (Nov. 2000) and do have other areas that spasm - did before surgery. I haven't noticed that the dystonia has been more agressive since surgery. Neither have I noticed that it "rerouted" itself back to my eyes. It's possible that it is too soon to tell. I do notice the other dystonia symptoms more now, but maybe that's because my eye spasms are better controlled and the other areas aren't. I don't remember the extent of your dystonia, so your doctor may have a point, but I would surely consider seeing another neurologist (movement disorder specialist) if at all possible.
Maybe that would be a good question to submit to the BEBRF newsletter.
I have read that 80% of those with BEB have other dystonias and I'm sure that myectomies are being done on some of that 80%.
Virginia in AL