Re: Possible surgery
Hi, Doris,Sorry to hear that your surgery has not met your expectations. This condition is frustrating, isn't it? I have found that stress reduction is a major factor in my dealing with BEB, and I urge you to pursue this. Look for ways of reducing your stress level, including stress management courses if you can find some. Perhaps you have already done this, but you didn't mention it in your post. Good luck to you! --- Lynn
Re: Possible surgery
Hi Doris,Welcome to the bulletin board. It's a fun place to be. I had a partial myectomy surgery 3 years ago. It really helped me a lot. Prior to the surgery, I was experiencing a lot of squeezing and clamping shut of both eyes. Believe me, it was making me nuts. The botox wasn't working on me either. The surgery has completely done away with all of that. I still get botox injections, however, as I blink a lot without it. Also, I have problems in the face also. I'm not familiar at all with the sling operation. Carol Brown, Blepho/meige
Re: Possible surgery
Hi Doris, just wanted to say welcome to the beb bb - sorry you have this disease, but you've come to the right place for advice and people who understand what you are going through. I haven't had any kind of surgery so will leave it to others to answer you. Keep in touch.June in Toronto (beb/meige)
Re: Possible surgery
Sorry to hear you have BEB & haven't had much success with previous surgery. In January of this year I had a limited myectomy in Salt Lake City by Dr. Richard Anderson. I am very satisfied. I can drive, read, & watch TV again. The botox just wasn't helping me much, certainly not enough to drive. I'm doing some blinking again the past week or so, & am scheduled for botox March 20. For me it was a tough decision deciding if I should have the myectomy. I'm glad I did.
Joann In Ark
Re: Possible surgery
Hi Doris and welcome to the bulletin board. I've had BEB for about 3 years, now. I elected to have an upper myectomy 11 months ago. BOTOX wasn't working well for me either and I had a major apraxia problem also.
I had exhausted most of my treatment options and gotten recommendations from two neurologists that specialized in movement disorders to go ahead with the surgery. I went to the most experienced surgeon that I could find to do the procedure.
An upper limited myectomy with ptosis repair and levator tightening was done.
I no longer have any squeezing from my upper lids (which was a big problem). I still have muscle pulling from my forehead, temple areas and lower lid area. This is enough pulling and spasming that it will still definitely pull my eyes closed and cause headaches. My eyes opened easier for a time but that seems to be getting worse. I do still need BOTOX injections and that lessens the pulling but my eyes still want to remain closed (apraxia). I did not have the Frontalis Sling procedure that you had done.
I'm a little surprised that you had that done without having an upper myectomy first. My understanding is that the myectomy is usually done first with levator tightening and ptosis repair and if that doesn't help enough with getting the eyes to open then the sling is done as a second procedure. Different doctors may choose to do things differently, though.The surgery is a treatment option and not a cure. People get varying results depending on the surgeon and his or her expertise, the severity of symptoms and people's individual anatomy and LUCK. Many have gotten more relief from their symptoms than I have. I'm not at all sorry that I had it done and would do it again for the positive results that I did get. Do your homework, view the surgery tapes from the foundation, go to the next conference in Texas where the surgical options will be discussed. Find the best, most experienced surgeon that you can for this procedure as not many are qualified or experienced in doing the myectomy procedure. Contact the foundation for names of surgeons experienced in doing myectomies. Call people who have had the procedure done. Have you tried changing the sites and dosages of your botox? You might try a different doctor for giving the injections. It may be that simple. Have you tried any medications to take along with getting your injections? Some medications help a little to a lot.
Stress management is also worth looking into. Good luck to you and ask whatever you wish. We're not shy.
Again welcome to the bulletin board and tell us a little more about yourself and how long you have had BEB if you'd like. Shirley in Arkansas BEB/Apraxia
Re: Possible surgery
Hi Doris, Welcome to the BB. I had a limited myectomy in Dec. of 1999
with ptosis repair and upper punctal cautherization. This surgery was preformed by Dr. Anderson in Utah. I must say that it has been very successful, I still have some problems with lights, and some times dry eyes. I have not had any Botox injections since the surgery.Like you the Botox just did not give me any relief.I tried three different Drs. over a period of four years. I do have to take some rest periods, and try to avoid stress. With my age that would be necessary anyway!
For me the operation was a piece of cake compared to struggling with blepharospasm. Not every person gets the same results, and I can only tell you what It did for me! Hope this has helped you. Corrie in S.C.
Re: Possible surgery
Hi Doris,I haven't had any of the surgeries, nor am I planning to do so. Just wanted to add my welcome and to urge you to drop in often with your questions and comments, and whatever you would like to share. Good luck. Sally in rainy North Idaho BEB/Meige
Re: Possible surgery
Dear Doris:I developed Blepharospasm in 1996 and within 6 months I was functionally blind with a slight bit of Oramandibular Dystonia. After the Botox and medications failed to helpme, I decided to go for a Myectomy operation. I had a full upper Myectomy with a Levator Advancement done in May of 1997 by Dr. David Jordan of Ottawa, Canada. He gave me a new lease on life in that I could keep my eyes open dispite the fact that it took almost a year for the swelling and discolouration to disappear. About 6 months after my surgery, my Oramandibular became very aggressive to the point that Dr. Jordan had to send me to a Neurologist that he knew was familiar with Dystonia. (He could not say that the surgery had aggrivated the Oramandibular Dystonia and it perhaps would have gotten worse even without the surgery). At any rate, the Newrologist has me on Kenadrin which has improved my Oramandibular but has given me some confusion and short term memory loss, however, these are well worth the trade off for Blepharospasm and Oramandibular. For someone else, it might workquite differently but for me, I cannot go backto my former employment with a law firm and with the memory loss, am not retrainable. Marcellin Chiasson, Nova Scotia
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