Re: Welcome |
Hi Sheila May ... Welcome to this BB site. We are not always as looney as we must sound right now, but a sense of humor goes a loooonnnnng way in helping us survive this dratted "condition."
I have not had a myectomy, nor any other "eye" surgery, but several here have had and I'm sure someone will be along soon to help answer your question.
Stay around and please tell us as much about yourself as you feel comfortable doing. How long have you been diagnosed and what are your symptoms? Plus anything that helps us "know" you better.
Sally in North Idaho where spring might come next week.
Welcome to the bulletin board, Sheila May. I haven't had a myectomy but others have and I'm sure they will post back to you. I've had beb/meige for about 7 years and botox works for me, even though I had to leave my job because of beb. Tell us more about yourself if you'd like to -we care. Best wishes.
June in Toronto
--modified by June in Toronto at Thu, Mar 21, 2002, 16:34:35
Hi Sheila. I've posted a link above that you can go to for a little more information regarding myectomies by Dr. R. Anderson. It is several years old and his surgical procedure has changed somewhat. He did a upper limited myectomy on me 11 months ago. Some things are better since the surgery and other things remain the same. The squeezing from my upper lids is gone. I do still have pulling and squeezing from my forehead and lower lids but the surgery did not involve these areas. I was hoping for a little more improvement with my apraxia problem but that is pretty much back to where it was before the surgery. I would still do it again for the improvement that I did get.
Success rates are difficult to measure, I feel. The surgery is not going to cure your Blepharospasm. Only improvement to varying degrees should be expected. It depends on the severity of your symptoms, the expertise of your surgeon(of which there are very few that are qualified to do the procedure and have a lot of experience) your anatomical makeup, and luck. The myectomy is a permanent treatment option that removes muscle from around your eyes. If you do decide to go this route, don't let any surgeon operate on you that hasn't done a lot of them. Check with the BEBRF for a list of physicians that are knowledgeable about doing this procedure and ask to talk to patients of theirs that have had this done.
Some have the surgery done and no longer require BOTOX, although I feel that most still do require BOTOX and or medication for control of their symptoms.
The myectomy probably will not improve your other facial spasms. In saying that, mine have improved. I was having head turning, jaw and teeth clenching and facial grimaces on a daily basis. The only time that I notice them now is when my eyes are really bad and I am struggling to open them. I don't know the reason for this improvement.
Coping is a day to day thing. An understanding and supportive family helps as well as you being as knowledgeable about the disorder as possible. A compassionate physician that knows what he or she is doing and will work with you is a must. I gain a lot of support from this bulletin board. I wouldn't have stuck around for almost 3 years now without a good reason. We talk about the latest information and theories and medications and alternative treatments-all the treatment options and also try to have a little fun along the way and also have an occasional snit. That's life. We cry together and we laugh together and sometimes get mad at each other but there is always someone here to support you and answer your questions and we do understand.
Tapes on the myectomy surgery can be borrowed from the BEBRF. Many people attend the yearly conferences to get a better insight into treatment options. The next one is in Houston, Texas on August 23-25th.
Good luck to you and ask whatever questions you like. Welcome to the bulletin board group.
Shirley in Arkansas with BEB/Apraxia/post upper myectomy
Welcome to the Bulletin Board, glad you found us. I have not had a myectomy but many others have and they will share their experiences in no time. I see Shirley already has. I've had this disorder for about 7 years and occasionally contemplate myectomy, but have not reached the stage of serious consideration.
I hope we see you here often.
Christel in Ca.
Welcome to the BEB BB. I have not had a myectomy either. BOTOX works for me so far. Hope we see you around here allot.
Dee in OR
Hi Sheila, and welcome to the BB - the BEST source of information. I had a limited myectomy from Dr. Anderson about 3 years ago. It helped me enough that I would do it again. I still receive Botox shots, but my spasms are not nearly as severe. (And I DO have the advantage of less-droopy eyelids...altho I'm supposed to disagree strongly about Botox for cosmetic reasons!) Mary
Shiela, I'm glad you found the BB. I think we talked on the phone several months ago. I too live in Idaho.
I had a myectomy four months ago from Dr. Anderson in Salt Lake. I return next Monday for a followup to that surgery.
It was a good experience for me, although after seven months without botox I'm now close to needing the shots. I was hoping I'd be one of those that don't need botox after surgery, but I don't think that's the case. Nevertheless,the myectomy has made me much more comfortable driving, socializing and doing just ordinary-everyday things.
At this point I have some "strong" itching and swelling is still noticeable around my right eye. I know in time that will improve.
I think you have my phone number . . please call if I can be of any help to you.
One of these days perhaps we'll hear from the Idaho Blepharospasm group about another meeting.
Just wanted to let you know that I had a lot of itching for many months but it did eventually go away. My forehead is also losing that numb sensation. I also had swelling that stayed for months-my right eye was also worse but more work was done on that eye. It does improve with time. The excessive tearing that I had lasted the longest of the postoperative side-effects and it has very gradually resolved also and only occasionally causes me problems.
I had Botox 5 weeks after my surgery because my lower lids were squeezing up and felt as though they would turn inside out. You're doing well. Everyone is a little different. Glad to hear that you are able to drive and function better now.
Shirley in Arkansas
Do you know of anyone who after having a Myectomy did not need Botox injections anymore? Just curious, since that surgery option often hovers in the back of my mind.
Christel in CA.
Christel, some (or at least one) have mentioned on the bb that they don't get BOTOX anymore following surgery. I believe another one went almost a year after her surgery without receiving BOTOX and others have said that they don't need it as often. I don't need as much since my surgery but I do need the BOTOX almost as often. I believe that it is unusual to not have to continue getting BOTOX after surgery. Here again, I would think that it would depend on the severity of your symptoms prior to the surgery and where an individuals squeezing is coming from. Mine was definitely coming from forehead, upper lids, temples and lower lids. The surgery was done on and for my upper lids and they no longer pull or squeeze but all the other areas continue to.
Sometimes people don't notice that they are actually having squeezing from all the other areas as their upper lid squeezing is so overpowering. Some don't notice the meige symptoms until after surgery for the same reason.
Dr. Anderson told me that almost always after the surgery, patients will continue to need BOTOX. He says that his happiest patients are those that have had surgery, continue BOTOX and also take medication.
All that you can really hope for is some improvement of your symptoms and not a cure. The degree of improvement varies from person to person.
Shirley in Arkansas where the sun is still shining but now we are in the 20's.
--modified by Shirley-Arkansas-USA at Fri, Mar 22, 2002, 10:24:10
A myectomy is not a cure, just a tool. I had it after taking Botox for a year every three months with very little results. I wanted to go back to work and get my life back and independence back so much that I had the surgery. I have talked with people who had it once and are doing great years later and I have talked to people who don't get much improvement. I go some improvement. Enough that the Botox helps with the hard painful squeezing spasms more than it did. I hate the way my eyes feel since the surgery and the tenderness even after almost 2 years. It is an individual decision, but one not to be made without trying all the other options. At the time of my surgery I couldn't find a doctor that would give me Klonopin. I've been on it for a year and it really has helped. I often wonder if I could have waited on the surgery if I had the Klonopin earlier. Oh Well!
Delaine, I don't seem to have the tenderness that still is there for you. Things were really tender for me for the first 6 months or so but I really don't notice my eyes feeling tender or uncomfortable in any way now, except when I've got squeezing going on. The doctor even injected me within the surgical area at one site a week ago(thought that he knew better) and I kept waiting for the pain to hit or for it to be tender and it just felt like all the other places that he injected. I was really surprised.
Is your entire surgical area still really tender or just certain places?
--modified by Shirley-Arkansas-USA at Thu, Mar 21, 2002, 22:24:14
Not the incision area, but the area around my eye brows are tender. It may be my fibromyalgia and not from the surgery. I can't pluck my eyebrows anymore without it hurting badly. Maybe I'm just a whimp. My elelids feel tight. He trimmed excess skin and my eyes don't close completely when I relax my eyes to rest or sleep. I got 32 units of Botox on March 14th and my right eye feels dryer than left. My left eye is the worst eye for spasms. My nose is spasming which always happens when I take Botox. I feel like a bunny.
I haven't had a myectomy but my left eye, also spasms the worst. My nose spasms more when the botox is wearing off - how different we are. I am a bunny (rabbit) - according to the Chinese calendar:-)
June in Toronto
I had a limited myectomy in mid January of this year and am very pleased at this time. I had botox last December & none since. The neurologist I saw this week was willing to give me Botox if I wanted it, but instead I requested an additional klonopin tablet per day, which he agreed to. He asked if I could function normally & I said yes I can now drive watch more TV & read. I'll eventually need the botox as I do still extra blinking. My forehead is tender to the touch as are the eyebrows. I have not been bothered with itching, although I occasionally use GenTeal on the lids. In summary, I'm very happy with the myectomy & the klonopin.
Joann in sunny Ark.