Posted by: Corrie Thomann ®
12/05/2002, 21:09:35
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Hi Pam,
It is so nice that you are seeking all of the information to help your dad. I will tell you some of my experiences with BEB. and apraxia. After suffering for four years with no relief from botox, and some medications I went to Dr. Anderson for a limited myectomy.
I like your Dad could not see without holding my eyes open with fingers or tape. Could not read or watch a movie. The myectomy helped me tremendesly,I can do all of these things now. Not every person gets the same results but I believe most get some improvement. I have not had to get Botox since the surgery in 1999. Definitely havstill e Blepharospasm with some spasms and light sensetivy.
The surgery was done in hospital as out patient. Was mostly painless with swelling and bruising for about 4-6 weeks. The numbness in forehead lasted approx. one and half years. Which is nothing if one can see!
If you have more questions I will be happy to answer you. Your Dad is very fortunate to have you.Corrie in S.C. with much ice, power outages and broken trees everywhere.
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Posted by: dorothy long ®
12/06/2002, 14:01:22
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Hi Corrie, your reply to Pam was very encouraging, since I am having Dr. Anderson do my surgery. I will be evaluated Dec. 30th then we will go from there. I feel that I have not had help from all the Drs. that I have seen with this disorder maybe things will change.
dorothy in Pa. all we got was snow, sure is hard on the eyes
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Posted by: Corrie Thomann ®
12/07/2002, 13:54:44
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I hope that your visit to Dr. Anderson will give you both some positive help with your spasms, I will be thinking of you.
The ice has melted but so many people are still without power in S.C.Even one of the local hospitals was without power for 12 hours.Corrie
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Posted by: Kathy in Oregon ®
12/07/2002, 08:46:58
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corrie, the storms there look absolutely devastating. I have been in ice storms before. The icy unreal beauty of all the tree branches ends when everything starts to snap and break off. Very scary., especially with the power lines!
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Posted by: dorothy long ®
12/06/2002, 13:47:25
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Hi Pam, I can't answer to many of your questions on beb, but I know this much it is very frustrating. I am 66 yrs old and was diagnosed one year ago today after suffering for a long time because no doctor knew what was the matter with me. I am going for surgery with Dr. Anderson Dec. 31st. Botox does not work very well for me, so I hope surgery helps. I also walk with holding my eyes open, and then they shut and I have spasms. Everything that we all suffer from. I also have grandsons that play baseball. I go to their games holding my eyes open or sitting with my eyes shut. Not much fun, but I will post on the bb and I hope its all good news. Good luck with your Dad, and for caring
dorothy
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Posted by: joyce whitt/NC ®
12/07/2002, 11:16:29
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Pam, Alan will probably see your post and give you good advice. I am seeing Dr. Anderson Jan 6th and if he thinks it necessary I will have surgery on the 7th. I thought I never wanted to have surgery again but like your dad I have to hold my eyes open with my fingers when they squeeze shut (which is 90% of the time)I finally have realized that I just can't do it anymore. My husband takes me to the grocery store or even Wal-Mart. I had just a bad experience in Wal-Mart that I decided that I NEVER would go in any store alone again. I gave list and money to my children and told them to buy my Christmas presents. Excuse me for getting off the subject. Alan talked to me the other day and he has had surgery with Dr. Anderson and he explained how he did things. He does the surgery in a hospital which is attached to his office complex. My eyes will be taped shut for two days, because I want them to have both eyes done at the same time. Most of his patients stay at the Chase motel/Hotel and they give a discount to Dr. Anderson's patients. You can just put his name in the search box, Dr. Richard Anderson, Salt Lake City, Utah and it will take you to his webb site, complete with telephone numbers and e-mail. I e-mailed him and explained my history and surgeries and that my eyes were still squeezing shut. I sent pictures which really were not good but two of them he was able to see how they were squeezing shut,and he answer me back ( I called the next day and he did get the e-mail. I think someone in his office checks his e-mails for him. Joyce in NC, who has been without power (had computer withdrawal and no TV)Since Thursdasy 6 am. Fortunately we did haveKerosene heaters and wwe were quite toasty. I even did some cooking on one if them. If you would like Alans e-mail and phone number, I am sure he would not mind, please e-mail me at jwhitt3@triad.rr.com
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Posted by: Cynthia ®
12/07/2002, 11:32:30
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Pam,
I don't have a million answers but I do have a few for what it's worth :-))
Dr. Anderson performed my limited myectomy in Nov., 2000. We arrived in Salt Lake City on a Tuesday, my office appointment was on Wednesday, the surgery (both eyes) were done on Thursday and I remained bandaged until the following Monday morning. We headed home on Monday afternoon = about a week.
I was VERY bad before the surgery -- no relief from Botox and was willing to try anything promising.
Yes I did regain some better quality of life afterwards. The improvement was worth it, but it's definitely not a CURE.
Hoping you find all the answers you are looking for - you must be a very caring daughter. God bless ...
Cynthia in IL
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