Re: Myectomy |
I read your posting looking for information from someone who had had a Myectomy operation. In the winter/spring of 1996, I developed Blepharospasm starting with excessive blinking, then to sensitivity to light even on overcast days, eye closure in the car or church, to the point that by Nov. 26th, 1996, I was so functionally blind that I had to quit work as a legal assistant. Four treatments of Botox from three different doctors did absolutely nothing for me. The next step to medications still left me blind after about 8 different kinds from my Neurologist. I was at the end of the road. I had heard to stay away from surgery not realizing that most of the people who were recommending against surgery were referring to Selective Denervation which involves opening the brain. I did start to hear from people who were getting relief from an operation called Myectomy which involved removal of the eyelid muscles through cuts near the eyebrows. Every patient I contacted had received some benefit from the operation, some more than others. I did not encounter any who were worse and who recommended that I not have it done. Each expressed the advice that the Botox and Medications should be tried before and that this was only as a last resort.
I was operated on May 26th, 1998 by Dr. David Jordan of Ottawa, Canada, who studied under Dr. Anderson. If I remember correctly, by this time Dr. Anderson had done around 500 of these operations and had the reputation of being one of the finest. At this point, I would have to add that Dr. Jordan, in my estimation, also fits in this catagory.the improvements were immedidate although my face was black and blue from my thin blood and my face was puffed up from the bruising. As Dr. Jordan predicted, the black/yellow colour and bruising took about six months to disappear so remember that patience is a virtue.
The operation has given me a new lease on life. Where I previously had to hang on to the wall to go to the bathroom, I now am able to go walking and jogging outside, am able to go back to church, am able to read the newspaper (except fineprint), and can watch the supperhour news on tv. I still do not drive (I haven't tried for safety reasons) and therefore am not back at work yet with the law firm even though I am only 54.
If there is any advice I can give, it is to focus on the positive things in your life and in my case, it was on the support I got from my wife, Yvette, my family and friends and especially the people on this Bulletin Board as well as the people in the Blepharospasm Foundation and the staff people at the Dystonia Foundation. They say God works through other people and I have no difficulty in believing that. I encourage you to pray and to thank God for anything positive that happens in your life. Its no picnic but try to forget the negative things that may happen or have happened in your life. Remember that by your posting, you have made another friend.....ME and if I can be of any help, contact me at any time, day or night.
Mr. Marcellin Chiasson, Port Hawkesbury, Nova Scotia,Canada
Hi Ann, Welcome to the bulletin board. One of our posters, Cynthia recently had a myectomy by Dr. Anderson, but she is on vacation right now but I believe that she has been reasonably happy with the results so far. Another poster, Alan Phair is in Salt Lake City right now. Dr.Anderson did a lower myectomy on him on the 8th. He had performed his upper myectomy a year ago. He was quite pleased with his results. I'm just mentioning these two as they will be unable to post right now as they are out of pocket. We have other posters that have had surgery by other doctors and they might want to respond to you.
I plan on having Dr. Anderson do an upper myectomy on me in the near future. Waiting right now on insurance approval before I schedule. There is a tape that you can view of Dr. Anderson doing the surgery that you can borrow from the BEBRF if you contact them. They could also give you a list of names of people who have had the surgery that you could contact, I believe.
Shirley in AR.
I'm not quite on vacation, but Lord willing will be leaving on Tuesday. It is over 4 months since my surgery and I would do it again. It is not a cure and Dr. Anderson will be very careful to let you know that. He told me I would still need Botox, but I have not felt the need quite yet though I have an eye evaluation scheduled with my neuro-opth on April 4 to see if further improvement can be made, especially with my vision. The upside is that very seldom do I still have the fight to keep my eyes open. Most of the time they are pretty comfortable. There has been improvement in being able to read, watch TV, drive, etc. The downside is that, though there has been much improvement, it's not cured and occasionally there is the very unwelcome reminder of that. The surgery experience itself was pretty comfortable. Are you having both eyes done at the same time or one at a time? When is your surgery scheduled? We'll be praying for you and looking forward to hearing about your improvement!
Ann I had an upper myectomy by Dr Anderson last Easter and I am very happy with the results. I have not needed botox but who knows what is ahead. I just take 1mg lorazapam per day and so far so good. My only problem is dry eye and I have another appointment with my eye doctor this week. I had the upper lids cauterized and now thinking about having the lower one done. I live in a very dry climate now so sometimes it feels like grit is in it. All I can just say that I would do it again and would recommend Dr Anderson. Like Cynthia said it is not a cure but an huge improvement. To anyone thinking about having this done I wanted to say that I had no discomfort whatsoever! Use lots of ice while bandaged and keep using the ice after. Then when you are able use pure V E oil to help the healing.
Catherine in Calgary
To the Moderators:
I was the first to post a reply to Ann Pyper's request forviews on the success/failure to the Myectomy procedure. While it shows up once you open her page, it has been removed from the Bulletin Board. Any particular reason?
Thanks for pointing this out to me. I was looking for it on page 1. Guess I had not looked far enough, however, I thought this was the thread we were on. Sorry and thanks for correcting me. God Bless.