myectomy


Posted by Sherrie Beck , Apr 13,2002,15:02   Archive
Would love to hear from any of you who have had the surgery and what you feel the benefits might have been. I am seriously considering doing this soon.

I wish you all a great day. Spring is definately in the air but I would surely like a little rain with it. It is very dry here in Montana.

Sherrie




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Re: myectomy

Re : myectomy --- Sherrie Beck
Posted by Sally - in - Idaho , Apr 13,2002,15:51 Top of Thread Archive
Hi Sherrie,

I have not had that surgery, nor am I planning to do so; however, I do want to welcome you to the BB.

My husband and I, along with four sons, spent three years in your part of the beautiful Montana state ... in the Kirby-Decker areas where we taught in the one-room schools. Loved it there and loved the people. Have only been back once.

This is a good place to hang out because there is always someone around who can discuss whatever is puzzling you. Please come often, share your successes and frustrations, and bring your sense of humor.

Good luck with your future treatment. I rely solely on Botox every two months and am desperate for it right now ... Wednesday is B-Day!

Sally in North Idaho who left a wee bit of her heart and soul in Montana.




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Re: myectomy/WELCOME

Re : myectomy --- Sherrie Beck
Posted by June in Toronto (June Floyd,June in Toronto), Apr 14,2002,07:08 Top of Thread Archive
Welcome to the bb, Sherrie. I can't answer your questions about a myectomy but I'm sure others that have had the surgery will post back to you. I've had beb/meige for almost 7 years now and botox seems to help so that I'm not considering surgery at this point. If you'd care to tell us how long you've had beb and what amount of botox you get, etc. - only if you feel comfortable in doing that.

I wish you a great day - it rained all day here yesterday and its looks very foggy here this morning although mild.

June in Toronto (beb/meige)




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Re: myectomy/WELCOME

Re : Re: myectomy/WELCOME --- June in Toronto
Posted by Sherrie Beck , Apr 14,2002,18:42 Top of Thread Archive
Hi, I hope this finds you doing really well. I have had beb for 3 years. I have had botox on a regular basis every 2 months and the norm seems to run at about 90 units. Lately I have not had the result that I experienced early in my treatment and can hardly go more than 6 weeks between injections. I have had an evaluation in Salt Lake and found that I would be a candidate for the surgery. Now I am playing the waiting game hoping that insurance will pre authorize the surgery. Some days I have really cold feet but then when I leave my desk and have to stop in the middle of the hallway until I can open my eyes I am happy that something might help a little more.

I did try the Myobloc and did not have good results. The injections were quite painful in that they really burned. When you get 16 little bee stings at a time it proved to be just a little much.

Have a great week.

Sherrie




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Re: myectomy

Re : myectomy --- Sherrie Beck
Posted by Cynthia , Apr 14,2002,20:33 Top of Thread Archive
I haven't been on the BB much lately but I certainly welcome all of the newcomers and can see that you are having your questions answered, are being encouraged and having some fun, too :-)) Dr. Anderson performed my myectomy Nov. 2, 2000. While it is not a cure, the improvement is worth it. I'm now getting much less Botox (25 u) and experience bothersome spasms much, much less. I am able to do most of what I did prior to BEB diagnosis except drive for any great distances.
Cynthia in IL where it was a beautiful day today!

--modified by Cynthia at Sun, Apr 14, 2002, 20:35:35




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Re: myectomy

Re : myectomy --- Sherrie Beck
Posted by MaryNY , Apr 14,2002,21:30 Top of Thread Archive
Welcome, Sherrie.....to the very best source of information on BEB - much better than the doctors! We've all been there, and all of us have done "some"of it! I've had BEB for about 12 yrs. or so, with the usual story of many doctors before I was diagnosed. I've been getting Botox for about 5-6 years. I had a limited myectomy about 3 yrs. ago (Dr. Anderson) and I feel that it helped me. I would do it again. (Doesn't hurt!) I stil receive Botox shots, but a lesser amount - every 8 weeks. One big advantage was getting rid of the "droopy" eyelids! I would recommend the surgery, if you are leaning that way. It helped me! Mary



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Re: myectomy

Re : Re: myectomy --- MaryNY
Posted by catherine pender , Apr 15,2002,09:58 Top of Thread Archive
Hi Sherrie

I had a myectomy by Dr Anderson 2 years ago April 20. Before the surgery I was struggling just to walk around the block without holding someones hand. Even got a dog to help me get through all the emotional frustrations going on. She has been by my side since. My husband came with me and was a great help. I had bandages on both eyes for 48 hours. I understand that Dr Anderson does 1 at a time now. There was lots of bruising and itching but no pain. The itching is the worst part. It last for a long time and is also numb.
I am back doing almost everything I did before the onset of this disorder. I can drive but not great distances. About 3 hours is pushing it.
Let us know if you decide to go ahead with the surgery. We can pass on other suggestions to make things a little easier for you.
Good luck

Catherine




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Re: myectomy

Re : myectomy --- Sherrie Beck
Posted by Shirley-Arkansas-USA , Apr 15,2002,10:55 Top of Thread Archive
Hi Sherrie. I had an upper limited myectomy done by Dr. Anderson in Salt Lake a year ago. I did get enough improvement that I would do it over again without hesitation. The squeezing from my upper lids is gone but I continue to have enough pulling and squeezing from my lower lids and forehead to close my eyes down. I get about half as much BOTOX as before the surgery. I do still have the apraxia problem that I had before the surgery. It was quite a bit better right after the surgery but is slowly getting back to where it was before the myectomy was done. I still am unable to drive, TV time and computer time is limited and I still have great difficulty reading. I continue to take Klonopin and Benadryl to help relieve my symptoms. I had quit my job after the onset of BEB and still would be unable to work.
People get varying degrees of improvement. Cynthia, Mary,Catherine and I all had the same doctor perform the surgery and we have gotten different results. There is no way of knowing how much improvement you will get.
If you can go into the surgery only expecting and hoping for some improvement and not a cure, I'd say go for it. I was merely hoping to be a little more functional and I got that.

Shirley in Arkansas BEB/Apraxia

--modified by Shirley-Arkansas-USA at Mon, Apr 15, 2002, 10:56:28

--modified by Shirley-Arkansas-USA at Mon, Apr 15, 2002, 20:11:07




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Re: myectomy

Re : myectomy --- Sherrie Beck
Posted by Corrie Thomann , Apr 15,2002,18:52 Top of Thread Archive
Hi Sherrie, Welcome to the BB. I had a limited myectomy in 1999 done by Dr. Anderson. It was very successful, not a cure but I have not had Botox since the surgery and up until now have not had to try any medications. I do drive, and most of the things I did before having Blepharospasm. It has made a world of difference in how I can function.
Wish you well in what ever choice you make.

Corrie




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Re: myectomy

Re : myectomy --- Sherrie Beck
Posted by Joann Humphrey , Apr 15,2002,23:24 Top of Thread Archive
In January I had a limited myectomy & am very pleased with the results. I can drive, read, & watch TV, which I did very little of before. My condition wasn't as bad as others. The botox injections helped some but I still needed to hold my eyes open with fingers to read, etc. I'm still tender around the eyebrows & my forehead is numb, but it's so wonderful to be able to keep the eyes open again.
Joann in Arkansas where Spring is here & it was a beautiful day.



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Re: myectomy

Re : Re: myectomy --- Joann Humphrey
Posted by Sherrie Beck , Apr 18,2002,10:20 Top of Thread Archive
It has been wonderful to hear from all of you. Joann, I would be interested to know when you had your surgery done. I have scheduled my surgery and am looking forward to it. May will be a busy time. If any of you have any little ideas of things I might want to accumulate beforehand that would help afterwards I would be glad to hear of them. Would one of those gel masks that can be refrigerated be helpful?

We are having a lovely wet snow here today. It is very welcome. My husband was out putting fertilizer on the grass late last evening. I told him that the neighbors would be calling the local news to come & take pictures. They didn't but I thought it might be a great idea. I of course left the house and didn't return until he was done. Hope all is well with you all.

Sherrie




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Re: myectomy

Re : Re: myectomy --- Sherrie Beck
Posted by Shirley-Arkansas-USA , Apr 18,2002,17:57 Top of Thread Archive
Sherrie, your surgeon or one of his staff should fill you in on the do's and don'ts. It would be a good idea to have several cold paks that you can refreeze that you can alternate. You'll probably be using them for awhile to help with swelling. I used them for weeks so have an abundant supply. Warm paks will also be used or alternated with the cold paks to help with the healing. Joyce had a wonderful suggestion some time back about using her crock pot set on Low and putting a couple of washcloths and water in it. Just lie back on the sofa and put a warm washcloth over your eyes and when it loses it's warmth, you'll have another one ready. I wish I had known or thought about that at the time.
You'll probably come home with drops and ointment to use in your eyes after the surgery. The ointment can be used all around your eyes and over the incision line. You can use vaseline or vitamin E oil around your eyes and forehead, also. If you decide to use vitamin E oil, don't buy the oil-just buy the gelcaps and poke a hole in them with a needle and use that oil. Much cheaper and the consistency of the oil is also smoother. I had a lot of itching (forehead and eyes) and swelling but minimal bruising. The bruising cleared up quickly but the itching and swelling went on for months. I also had a lot of excess tearing that lasted a very long time. All that stuff does eventually go away and you may not have any problem at all with it.

Let us know how you do. Who will be doing your surgery and when? Keep asking whatever questions you have.

Shirley in Arkansas (one year post myectomy)




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