Surgery & BEB ...
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Posted by: Moderator-JB ® 07/29/2003, 21:42:58 Author Profile Mail author

Shirley brought up a good point regarding surgery (Myectomy, limited or full). It is wise for EVERYONE considering this route to do your homework thoroughly beforehand. Read information from the BEBRF and Internet. Talk with other patients of the doctor you choose. Investigate Botox, systemic medications, your level of need and results of others before choosing surgery. Surgery is not a majic 'fix' which will bring you back to normal forever and ever. It may help, not help at all or anywhere in between. If you decide to go ahead, choose your surgeon carefully. A physician who has done only a few of this type will probably not give you the results that someone who has done hundreds will. Please comment, those of you who have had surgery. You may help another, more than you know. Have a good eye day, Judy Modified by Moderator-JB at Sun, Aug 03, 2003, 10:44:31

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Re: Surgery & BEB ...
Re: Surgery & BEB ... -- Moderator-JB		Top of Thread	Archive

Posted by: Moderator-JB ® 07/31/2003, 10:56:52 Author Profile Mail author

Please comment, those of you who have had surgery. JB

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Re: Surgery & BEB ...
Re: Re: Surgery & BEB ... -- Moderator-JB		Top of Thread	Archive

Posted by: Steve-In-Tennessee ® 07/31/2003, 11:17:25 Author Profile Mail author

I HAD A LIMITED MYECTOMY 11/5/02 DONE BY DR. RICHARD ANDERSON. I HAVE DONE RATHER WELL SO FAR. IN LATE FEB I WAS DIAGNOSED WITH MEIGE'S SYNDROME. THE SPASMS THAT I AM HAVING IN MY TONGUE & JAW ARE ALSO CAUSING MY EYES TO CLOSE, BUT SINCE MY SURGERY I CAN GET THEM OPEN MUCH EASIER NOW. I AM TAKING MEDS FOR THE MEIGE. I HAVE NOT NEEDED BOTOX SINCE MY LAST TREATMENT SEPT. O2. THE MEIGE HAS AFFECTED MY SPEECH REALLY BAD. STEVE

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Re: Surgery & BEB ... Steve
Re: Re: Surgery & BEB ... -- Steve-In-Tennessee		Top of Thread	Archive

Posted by: barbara ® 07/31/2003, 13:12:53 Author Profile Mail author

What meds are helping you with meige. Barb

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Re: Surgery & BEB ... Steve
Re: Re: Surgery & BEB ... Steve -- barbara		Top of Thread	Archive

Posted by: Steve-In-Tennessee ® 07/31/2003, 15:53:57 Author Profile Mail author

BARBARA, NOT MUCH SO FAR I AM TAKING 5 ARTANE 2MG, 4 NEUROTIN 300MG, 4 CLONAPIN 1MG, 3 XENAZINE "TETRABENAZINE" I AM NOT SURE ON THE AMOUNT OF XENAZINE BUT IT LOOKS LIKE IT IS 1MG. BOTOX OR MYOBLOC DID NOT WORK ON MY EYES, SO I HAVE GOT TO HAVE HOPE THAT WE COME UP WITH A DRUG COCKTAIL THAT HELPS.ABOVE IS WHERE I STARTED. THE XENAZINE IS A DRUG FROM THE UK, MY DOCTOR WROTE THEM A LETTER TELLING THEM THAT I NEED THIS DRUG. IT IS NOT APPROVED FOR SALE IN THE US AND IS NOT FDA APPROVED. WE ARE STARTING TO BACK OFF OF SOME TO SEE WHAT IS WORKING AND WHAT IS NOT. THE XENAZINE SEEMS TO BE HELPING MY SPEECH AND MOVEMENTS SEEM TO BE BETTER NOW. THIS DRUG IS COSTING ME 300.00 PER MONTH, BUT SO FAR WORTH IT. STEVE

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Re: Surgery & BEB ... Steve
Re: Re: Surgery & BEB ... Steve -- Steve-In-Tennessee		Top of Thread	Archive

Posted by: barbara ® 08/01/2003, 16:40:49 Author Profile Mail author

Steve I also used tetrabenzadrine for many years sarting eight years ago. I worked wonderfully for my meighe until it lost it effectivness. When I first got it you could just call the London Pharmacy and they would send it out to you for $60 a month..Restrictions now have made it more difficult to obtain and horribly expensive. It is a great drug-very little side effects.

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Re: Surgery & BEB ...
Re: Surgery & BEB ... -- Moderator-JB		Top of Thread	Archive

Posted by: Corrie in S. C. ® 08/01/2003, 06:46:52 Author Profile Mail author

I do not post often, although I read the BB occasionally. I had a limited myectomy in Dec. 1999 by Dr. Anderson which was very sucessful. Not a cure, but I have not had to get Botox since the surgery. I do drive, sew, and do most of the things I did before Blepharospasm.Have been able to work a vegetable garden too. He did both eyes at the same time and my eyes were covered three days. I don't believe I could have managed being alone for that time. I had swelling for several weeks. The itching lasted several months and numbness in forhead for one or two years. It was mostly painless, or I only needed tylenol. My biggest problem now is sensitivity to overhead lights and bright sun. I wear the tinted glasses and a sun visor when outside or in bright lights, and I use ointments in eyes at night with a sleep mask. Corrie in SC

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Re: Surgery & BEB ...
Re: Surgery & BEB ... -- Moderator-JB		Top of Thread	Archive

Posted by: Anamarie ® 08/01/2003, 20:07:06 Author Profile Mail author

I had wonderful results from my surgery and do not need further Botox injections. It seems that glasses of all sorts bother me if I wear them when I do not need them. I discovered this when I received my prescription tinted lenses about a week after the surgery. I had terrible spasms in my nose and down into my neck when I wore the tinted glasses. As a result I now use only reading glasses...the inexpensive kind. I do not wear sun glasses or swimming goggles. I use a hat or visor in the sun and I just tolerate the chlorine. I am generous with the night time eye ointment and use artificial tears in the daytime as needed. About the only things that bother me are heat and wind. I have learned how to stop spasms, but I have very few to stop. Before the surgery, I was functionally blind so I am very thankful to be able to do all that I could before the first symptoms of blepharospasm. Anamarie

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Re: Surgery & BEB ...
Re: Re: Surgery & BEB ... -- Anamarie		Top of Thread	Archive

Posted by: JEAN/NY ® 08/02/2003, 07:53:13 Author Profile Mail author

Anamarie, I am so happy that you had success with your surgery. Can you tell us who did your surgery? I have been diagnosed with Apraxia and may be looking in that direction. Thanks, Jean in NY

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