Myectomy Denied


Posted by R Elias , Feb 12,2002,21:05   Archive
I asked my neurologist to request a referral to have a myectomy done. He denied my request, stating that because of the type of dystonia I have rather than only having blepharospasm it would not work for me. The reasons being that the dystonia would possibly become more aggressive in another area, such as the back or neck. Also, that it may re-route itself back to the eyes and make them worse. He feels it is a good procedure, but only if your problems are limited to blepharospasm. He asked me why would I want to do that to myself. Instead he increased my dosage of klonopin to 1mg 3 times a day, but that just seems to make me depressed, grumpy and grouchy and still doesn't help my eyes. (Plus I still get my BoTox) I asked him to try me on cogentin again since it worked well the last time, but he didn't want to do that since the last time I was on it I had a bad reaction and developed a very severe case of tacycardia(sp?) and palpitations. I asked him to put me on a smaller dosage and to monitor me, but he still wouldn't do it. He had me on artane once, but my reaction to that was really bad. I ended up in the emergency room. I've also been on levadopa & carbadopa and many other drugs. I just want to know if this is true about having dystonia and getting a myectomy, has this happened or could it happen? Could the dystonia become more aggressive if I have a myectomy? I feel like my dream of the possiblity of becoming more functional has been crushed. If I was an older person maybe I could deal with it, but I have young children (11,8 & 7)and I can't really go anywhere with them or do anything with them. I can't even take my wife out on a real date. Thanks for listening. Any input would be greatly appreciated.



Recommend Current pageAuthor Profile
Replies to this message


Re: Myectomy Denied

Re : Myectomy Denied --- R Elias
Posted by June in Toronto (June Floyd,June in Toronto), Feb 13,2002,07:48 Top of Thread Archive
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)




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Myectomy Denied

Re : Myectomy Denied --- R Elias
Posted by Carol Brown , Feb 13,2002,13:08 Top of Thread Archive
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




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Myectomy Denied

Re : Myectomy Denied --- R Elias
Posted by Virginia , Feb 13,2002,14:17 Top of Thread Archive
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




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Myectomy Denied

Re : Re: Myectomy Denied --- Virginia
Posted by R Elias , Feb 14,2002,23:20 Top of Thread Archive
Dear Virginia & Carol & June . Thank you for taking the time and responding to my questions. I think that another opinion is in order. This type of surgery is one where you have to weigh the pros and cons. Once again thank you. God Bless.... Rolando



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile