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| Thinking of having a myectomy |  | ||
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Posted by: Joan ® 11/30/2005, 09:32:12 |
I have apraxia as well as the beb and have been told tha t tightening of the opening muscle plus the removal of spasming muscle would help. I don't see postings about apraxia very often and wonder how much success there is with this surgery. Do you usually end up getting the frontalis sling? I just feel that it would be best to cope with the devil I know than the devil I don't know but I have an appointment looming for a consultation---like tomorrow!! so I have to make a decision. I am up and down like a yo-yo. How problematic should your eyes be before you opt for the surgery? I know this is a decision you have to make yourself but any input would be appreciated. Thanks! Joan from Mississauga,Ontario |
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Posted by: june ® 11/30/2005, 12:14:10 |
Joan, I have heard as many pros as I have heard cons. Just like we did when we looked into DBS. I am sure you will get more response as people login to the BB.
June
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Posted by: June in Toronto ® 11/30/2005, 15:40:48 |
June I don't believe the myectomies are reversible as they remove muscle! the other June in Toronto |
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Posted by: Claire from Canada ® 11/30/2005, 14:06:31 |
I had it done in Apr 04 and it makes a world of difference. Perfection does not exist, but I could not drive before the surgery and now I can 90% of the time. I got a tightening of the levator muscle. The doctor said that if that were not sufficient, I would need a frontalis sling, but that has not been necessary yet. You can email me your questions if you have more, or ask them on the board. I will be glad to inform you. My details are posted on the 'Hands across...' posting earlier this week, FYI. Claire from Canada |
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Posted by: catherine pender ® 11/30/2005, 14:28:52 |
I live in Calgary and went to Dr Anderson in Salt Lake City in 2000. I had apraxia as well as beb. I had the musceles tightened and so far so good. I drive, golf, Tennis. Had both eyes done at the same time. Don;t think they do that now.
Where in Toronto are you having it done. I am moving to Collingwood (sometime soon) and am having a hard time getting an appointment with someone. Dr Kraft list is very long but I am on it. I don't know what I will do if I can't get in when I need to You can e mail me if you like patandchat@yahoo.ca Good Luck, It was the best thing I did Catherine Modified by catherine pender at Wed, Nov 30, 2005, 14:31:00 |
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Posted by: Joan ® 12/01/2005, 08:44:36 |
Thank you, Catherine. Another good news story. Dr. Kraft is my botox doctor and I feel very confident with him. My husband is not keen on the rushhour drives on Tuesday mornings into Toronto but other than that I have only good to say. His secretary is so nice and helpful and they go out of their way to make it work. During SARS we couldn't get into the hospital so he made other arrangements. Dr. Kraft referred me to Dr Khan in Mississauga for the myectomy and I have had one appt. with him. He is a 5 minute drive from our house! Dr. Kraft said this surgery is not is not as complex as a lot of the surgeries he does. Thanks for your input and hope you have luck getting into see Dr. Kraft. Dr. Khan also does the botox so he would be a good alternative although he seems to be very busy doing surgery. Thanks for your post.
Joan from Mississauga |
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Posted by: Joan ® 12/01/2005, 08:22:18 |
Thank you, Claire. Love to hear success stories. . I have your email address so I would like to get in touch. My biggest problem seems to be getting my eyes open once they close, even if the spasm is weak. Once evening comes it's a lot more work!
Thanks for your input. I'm glad you have such improvement. Joan from Mississauga |
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Posted by: Claire from Canada ® 12/01/2005, 09:11:30 |
Hi, My surgeon is Dr Jordan in Ottawa. He is a good friend of Dr Anderson and worked with him and has published documents on the subject of BEB with him. Claire from Canada |
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Posted by: June in Toronto ® 11/30/2005, 15:43:20 |
Joan, as we live close to each other I, too, am wondering who is doing your surgery? One of our support group members (BEBCRF) went to Dr. Khan in Mississauga and thought he was great. E-mail me if you wish. June in Toronto which is next door to Mississauga |
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