Posted by: Virginia ®
12/22/2002, 19:14:21
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Kelly Saffell was one who said her doctor recommended that she not have a myectomy. She didn't say why, but it's possible that it is because she is so young. Maybe she will see this and elaborate.
--modified by Virginia at Mon, Dec 23, 2002, 10:38:45
Modified by at Mon, Dec 23, 2002, 10:38:45
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Posted by: Kelly Saffell ®
12/23/2002, 09:04:06
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I've had 2 doctors tell me that they don't think I need to have surgery at this point - as well as my husband. Since increasing my botox to 140 I am better and able to do things around the house and drive a few miles. My eyes aren't shut all of the time like alot of people's are. They don't want me having surgery because I am only 33 and they believe that there will be much improved treatment options in my lifetime and would prefer that I not do something permanent in the meantime unless I am a complete failure to the options currently available. I would consider surgery if I could not open my eyes most of the time and was homebound but, while I have MANY limitations, I can function within those limits and manage my symptoms with higher than normal doses of botox and low dosages of meds. If an overwhelming number of myectomy patients were "cured" by the surgery I would go for it without question. Most seem to function better than they did but are still limited to the degree I am now. All of my family is in Tennessee and having/recovering from surgery with a 7 and 4 year old would be highly difficult.I think Kathy also said she was not a candidate for surgery but didn't elaborate. Kelly in Dallas
--modified by Kelly Saffell at Mon, Dec 23, 2002, 09:24:08
Modified by at Mon, Dec 23, 2002, 09:24:09
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Posted by: Ann Doyle ®
12/23/2002, 13:50:45
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Kelly, I am seriously thinking of a myectomy but I am 72 and my eyes are closed most of the time. The way they are talking about albumin and there may be other things, perhaps there will be something less invasive than surgery when or even if your eyes get worse. Ann Doyle
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Posted by: Patti Miller ®
12/23/2002, 22:57:05
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Thanks for all the comments. It is a tough decision to make to have the surgery. While waiting in Dr. Anderson's office, my daughter was reading a volume 2 book from BEBRF of case histories. My daughter said, "Mom, you don't want to read any of these, none of them are like you - they all got better". WHen Dr. ANderson came in the room, my daughter made reference to the book. He said, "I don't see those kind of patients anymore". We know that there are so many variable cases of BEB, if the botox is working for you, and if you can wait for more successful solutions and research down the road, you are better off (especially if you are young and functioning). My first question for him was, "How close are we to finding a cure for BEB?" Answer: "When we find a cause, we'll find a cure!" Patti in SC
--modified by Patti Miller at Mon, Dec 23, 2002, 22:58:26
Modified by at Mon, Dec 23, 2002, 22:58:26
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