Myectomy twice?
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Posted by: Mary, upstateNY ® 10/24/2003, 17:45:08 Author Profile Mail author

Maybe it's too soon to tell, since the limited myectomy hasn't been available that long, but does anyone know whether it is ever repeated, say in a few years or so? Mary

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Re: Myectomy twice?
Re: Myectomy twice? -- Mary, upstateNY		Top of Thread	Archive

Posted by: Anamarie ® 10/24/2003, 20:14:41 Author Profile Mail author

It seems as if several people have said that they have had a partial myectomy more than once. I know that nerves can regenerate themselves, but once muscles have been removed I do not understand why a second partial myectomy would accomplish anything unless the spasms involve different muscles and the second partial myectomy removes different muscles. I had a partial myectomy in February of this year and cannot picture having to have another one. Not many surgery patients do as well as I have, perhaps those are the ones who have more than one limited myectomy involving different muscles. If someone could explain this to me, I would really appreciate it. I am having my first support group meeting this Sunday and am cramming for information so that I might be able to answer some questions. Yes, I have learned a lot, mostly from my own experiences, but I would like to learn more. I have a notebook for questions that my guest speakers cannot answer so that I can try to find answers for the people in my area. I guess, if we knew all of the answers perhaps we wouldn't have BEB, or at least it would not be a problem.

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Re: Myectomy twice?
Re: Re: Myectomy twice? -- Anamarie		Top of Thread	Archive

Posted by: June in Toronto ® 10/25/2003, 08:23:03 Author Profile Mail author

I haven't had a myectomy (limited or full) but as I understand it NOT all the muscles are removed during that sugery. So, therefore, a second surgery (if indeed there is one) must mean different muscles were removed as muscles don't grow back. Just my idea on the subject. Good luck with your support group meeting. June in Toronto

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Re: Myectomy twice?
Re: Myectomy twice? -- Mary, upstateNY		Top of Thread	Archive

Posted by: rose 1946 ® 10/25/2003, 14:00:37 Author Profile Mail author

I had a partial myectomy in 1997 and it was good for 5 years (for me anyway). I never had botox again until this August when the problem reoccurred. Is is true that this surgery can be performed again? Has anyone out there had the procedure more than once? If so, I'm going to speak with my doctor because I had no pain or problems of any kind from the surgery and would gladly do it again rather than being on all these hit or miss medications. Thanks

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Re: Myectomy twice?
Re: Re: Myectomy twice? -- rose 1946		Top of Thread	Archive

Posted by: Anamarie ® 10/25/2003, 19:30:09 Author Profile Mail author

Rose, Do you know why your BEB started again? Does it seem to be in different muscles? I agree with you that the surgery was not a problem at all. In my case I had to have the surgery about 500 miles away from our home, but that was not a problem. I would gladly do the surgery again if I needed to. For some reason I cannot even imagine that I will have a problem again so long as I do not wear glasses except for reading. When I put my glasses on to read I take them off immediately even if it is to just glance at something at a distance. You may have read on the BB that glasses seem to be my biggest problem. I know, glasses are not the usual problem, but we all are different. Unlike most of us, light does not bother me at all, however, I have dry eyes. I use the nighttime ointment which seems to take care of the dry eyes, but I have to be careful not to use too much. I do not use any drops in the daytime. Sometimes if I am in the wind my eyes get rather dry so I use just a tiny bit of the ointment. It makes my vision blurred for a few minutes but it usually takes care of the problem. The drops seem to agitate the problem. Anamarie

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Re: Myectomy twice?
Re: Re: Myectomy twice? -- Anamarie		Top of Thread	Archive

Posted by: rose 1946 ® 10/26/2003, 08:58:36 Author Profile Mail author

Hi Anamarie, I don't know why my BEB started again or whether it is different muscles, all I know is that it was very depressing to have this condition return when I had been almost totally free of BEB for 5 years after my surgery and was no taking any medication or botox injections. I'm still waiting to hear from anyone who might have had the myectomy done more than once. I only use drops in my eyes once in a while. The first couple of weeks after my botox injections I was using drops 8 - 10 times daily and the doctor said to use them as often as I felt I needed them. Botox is not my solution. If the new medications I am on don't work I don't know what the doctors will do with me next. One doctor told me I was an anomoly and another said that on a scale of 1-10 in severity he rated me an 8. That didn't do alot to encourage me that I could be helped any further. Hope someone out there has an answer to my surgery question. Thanks for listening.

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Re: Myectomy twice?
Re: Re: Myectomy twice? -- rose 1946		Top of Thread	Archive

Posted by: Anamarie ® 10/26/2003, 20:21:25 Author Profile Mail author

Rose, We had our first Tampa/Orlando Area support group meeting this afternoon. Dr. John Susac, my neuro-ophthalmologist here in Winter Haven, was one of our guest speakers. I asked him about the need for a second myectomy in some patients and about the BEB symptoms after 5 years of being free of problems. He said that the problems most likely involve different muscles and though he has never come across anyone who has a second partial myectomy he thought it was a possible solution. I have read about patients who have had a partial myectomy in the upper lids followed by a partial myectomy in the lower lids. Dr. Susac still feels that an attempt to control the symptoms with medication and Botox should be the first course of action. I am kind of like you, I wish I had had the partial myectomy to start with instead of going through all of the trial and error, but I also understand the physician's point of view that the partial myectomy should be the last resort. Again, I guess if the physicians had all of the answers, we wouldn't have so many problems. Good luck to you. My husband, bless his heart, gave a little speach today about the importance of everyone carrying one of the BEBRF brochures with them at all times to give to anyone that they think shows symptoms of BEB. He knows how difficult it was for me to go without a diagnosis for a year and a half. We heard one man today tell his story of how he went for 10 years before his condition was diagnosed! My husband comes up with the best unprepared speaches of anyone I know. Anamarie

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Re: Myectomy twice?
Re: Myectomy twice? -- Mary, upstateNY		Top of Thread	Archive

Posted by: APhair ® 10/30/2003, 19:09:17 Author Profile Mail author

Mary, I had a limited upper Myectomy done in 1997 in Boston at Mass Eye & Ear Infirmary and had it repeated by Dr. Anderson in 2000. The first one I had was more of a cosmetic nature in my opinion as there was not heavy muscle taken out. Dr. Andersons operation on the other hand was very extensive. I went on to have a lower one done the following year by Dr. Anderson. I swear that the muscles are growing back in my case and Dr. anderson has said that in rare circumstances this can happen and he has to go in and do a touch up. I don't know if they ever have to do a repaeat total job again but it is something that you can ask him if you want to. He would be glad to answer you....Alan

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