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| Been treated with Botox to diagnose my condition |  | ||
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Posted by: Dr Phil ® 01/04/2006, 18:42:26 |
FYI I have been seeing a new doc - this one recommended by the Danish dystonia foundation - and I must say it was a far more in-depth and professional treatment I received this time, as opposed to the first eye-doc I saw. "Come back in 6 months if you still have the problem". Hello? Anyway.
2) And if it helped me - I now had at least one way to keep the condition at bay. Now after two weeks and two visits (and an extra Botox injection under my right eye) I feel a slight inprovement. I think it´s more a psyhological one ("relax. Someone is taking care of your eyes..") than an actual physical one. But I´ll take any help I can get.
I also started using some eyedrops that you guys might find helpful.
They seem to soothe my eyes quite well, and I dont feel the irritation and "wind" in my eyes like I used to. Take care everyone.
:0) Lasse
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Posted by: APhair ® 01/04/2006, 20:01:16 |
I can't really tel by your post whether you do have Blepharospasm, although you do mention spasms, or not as you realy didn't list all your symtoms other than to say that the Doctor is giving you Botox as an aid to diagnosis (never herd that one before). As for voltaren, I do not believe it is an eye drop in the sense of one that provides moisture for the eyes. If I remember right, I used to take it when I had what I called "eye aches". It did work great for that. If you have the spasms only in one eye then you have Hemifacial Spasm and not BEB. Both eyes would be BEB. As for Meige, that would be a combination of the Blepharospasm and a facial Dystonia such as around your neck and/or mouth area. It is always great when you can find a good doctor and I pray that this one will work for you...alan |
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| Meige Syndrome "operable"???? | | ||
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Posted by: Rita Molnar ® 01/05/2006, 18:20:55 |
I didn't know that Meige Syndrome could be corrected through surgery....Thought that was true of Hemifacial Spasm only... Does anyone know more about this possibility? Rita from Central New Jersey |
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Posted by: Dr Phil ® 01/06/2006, 10:28:19 |
Hi Rita. I am NO expert in this area, I just heard (maybe I got it wrong) that both Meige and Hemifacial spasms are operable.
My doc said the operation itself was no biggie, although drilling holes in your cranium seems like a pretty serious deal. He assured me it wasn´t. Modified by Dr Phil at Fri, Jan 06, 2006, 10:29:00 |
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Posted by: Lynn Yarbrough ® 01/07/2006, 16:27:00 |
There have been some successes with Deep Brain Stimulation on Meige (but not BEB) and other dystonias, but the technique is still in its infancy and experimental. HFS is treatable by a surgical repair with a very high success rate, but the origin of HFS is in the interference between an artery and the 7th crainial nerve, so all that is neeeded is to keep them apart by inserting a small piece of Teflon between them. DBS is much more complex. --- Lynn |
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Posted by: Rita Molnar ® 01/07/2006, 23:08:39 |
Lynn..the reason why I was so interested in a possible surgical solution for Meige is...My doc diagnosed me 5 years ago as having BEB and Meige. I don't know if I'm different than most, but the BEB is affecting my right eye significantly greater than my left, and what he says are Meige symptoms seem to appear only on the left side of my face. To me that indicated HFS rather than Meige...and I tell him that, but he keeps insisting I have Meige... Any thoughts? I probably should go somewhere for a second opinion, but I just wondered what you thought about my suspicions... Rita from Central NJ Modified by Rita Molnar at Sun, Jan 08, 2006, 21:37:10 |
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Posted by: tomspasm ® 01/06/2006, 11:20:55 |
Hi Lasse, I think you will find if you research it further that the microvascular decompression surgery you refer to for the 7th cranial nerve is done for Hemifacial Spasm but not for Meige Syndrome. I think you will also find that people who have surgery for any of these eye conditions (such as a limited myectomy or a frontalis sling) do not experience a miraculous cure, but rather an improvement that they continue to supplement with Botox shots and medications. Dig a little deeper into any of the medical "solutions" and you'll find they don't work quite as fantastically as originally advertised, so to speak. You should understand that, being in the advertising business! TomSpasm |
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Posted by: occular_promise ® 01/07/2006, 14:22:18 |
hi all,
tom i couldn't help but chuckle at your post. what you wrote is very accurate, although being a botox failure, i'm very much a believer of surgery. you are correct, its not a cure, but with me gave me considerable relief for some time. botox, after my limited myectomy & sling never helped. botox b,..was the most horrific experience i ever had. although, on occassion, when my eyes are soooooooooooooooo bad i think of getting the shots,..then i remember all the ptosis ''A'' caused ect. take care & i wish the best for everybody! |
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| Surgery - simple, NOT | | ||
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Posted by: Moderator-JB ® 01/14/2006, 12:59:52 |
Lasse, MVD is for Hemi-Facial Spasm only, as has been described by some of the other posts. HFS is not a dystonia. Meige, on the other hand, is a combination of Blepharospasm and Oromandibular Dystonia. BEB has surgical procedures that include Myectomy and Limited Myectomy. Apraxia may be helped by a procedure called a Frontalis Sling along with the previous Myectomy surgeries. DBS (Deep Brain Surgery) can help some with Dystonia, however it has not been found to help BEB as of yet. Dystonia in any shape is thought to be caused by a disruption in the Basal Ganglia of the brain. It is not cureable at this point in time. Botox and some medications can help some people. We are each different. Any surgery should be researched very well. It is not an easy road, nor a 'magic bullet'. Judy
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