Need help!


Posted by R Elias , Mar 11,2001,22:01   Archive
Hi! This is Lisa, Rolando's wife. I need to get some information regarding myectomy. My husband has segmental generalized dystonia, but he has been having a lot of problems with his eyes. The pain has been extremely bad and he gets no relief. I need to know how the myectomy works. Is it an upper & lower? He also has Meige syndrome. Is it an out-patient procedure? If not, how long would he be in the hospital? How long is recovery? Would he still need to get Botox after he has the operation? He needs to get a little more independence and perhaps this would allow him to get around and out at least a little more than he does now. Is there any information I can get so that when he goes to his doctor this Tuesday I would be able to show it to the doctor? His doctor has never mentioned the possibility of surgery even though he knows all that he goes through with his eyes. Is there anything I can find on the Internet about the procedure? Will the lower myectomy help him with the Meige? Might it decrease the amount of spasms in the lower part of his face? Thank you for any information you can give me. God bless.--Lisa



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Re: Need help!

Re : Need help! --- R Elias
Posted by Virginia , Mar 12,2001,08:42 Top of Thread Archive
Lisa,
Several of us on the BB have had myectomies done by different doctors and not all of them will be exactly alike. Mine was an outpatient procedure, but I was kept in "extended observation" overnight. Some patients are sent home or to hotels instead. Recovery will vary with the individual - and "recovery" can mean different things to different people. It only took a few weeks for most of the swelling and bruising to go away. I drove 10 days or so after the surgery. The doctors will tell you that it can take 6 months to a year to completely heal - particularly for the forehead numbness. Some still need botox and others are okay without it. I had an upper lid myectomy and have had to have botox in the lower lids since the surgery.

I posted a link below to an abstract from a 1999 BEBRF conference presentation by Dr. Anderson, who does a lot of myectomies (and a lot of presentations). It will explain how he does a myectomy. You can also contact the BEBRF about borrowing a video of a myectomy being performed. There is no charge except for postage to return it. Hope this helps some. You can also do a search on "myectomy" on the BB and read some of the other posts that have been made on the subject.

Botox can sometimes be given to relieve Meige symptoms in the lower face. I don't think this is usually addressed surgically.

Virginia in AL

Related link: http://www.blepharospasm.org/99anders.html




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