Please help! Would like more information about Burke's surgery in L.A.

Welcome to the NSDA bulletin board. First let me say I have had ADSD for 17 years and have taken Botoxium Toxin - Type A Injections from 1998 until February of 2001. I decided to have Dr. Berkes' surgery and had it on June 12th of 2001. I am still in the recovery period, so can't say much about that, except for what I've been through thus far. I am 39 years old and develops SD in my early 20's. I was an Admin. Exec. Secretary for 12 years and tried so hard to keep my job, but was not able to do so because the spasms and my voice got so bad.

You ask was this surgery something they do on folks who are not successful with Botox. No, no true. I think a lot of folks have had this surgery because the botox became ineffective, however a lot of them had it because of the ups and downs of the side effects of Botoxium Toxin. As for me Botox did stop working effective for me and I was tired of the roller coaster ride of the injections and all the side effects. And because SD has already destroyed over 1/2 of my life so, I decided to give it a try. The Surgery takes a while to get over as with any surgery. Some say a year or so others sooner, it is truly hard to say. I was told by Dr. Blumin and Dr. Berke that I was the perfect candidate for this surgery and that I should be able to regain my voice within 3 to 6 months after surgery. It is a major surgery and there are sacrifices that must me made, however I truly believe that it will be well worth the efforts. After surgery there are some difficulties in swallowing etc., but no worse than with Botox in my opinion. Well, allow me to back up a bit and say it is a bit worse, because the muscles and nerves are severed and retied and must allow time for them to reinnervate and heal properly. The main problem is regaining the ability to eat solid foods. You must eat only soft pureed foods for a period of 2 weeks to 1 month. They give you a powder stuff called Thick-It that allows you to thicken your liquid drinks and foods to a honey consistency which allows you to be albe to swallow without choking. So, all in all it is not something that cannot be tolerated, but is difficult.

That is so strainge. Yes, Dr. Blumin and the nurses at the hospital told me to stay on a soft diet and that I'd be able to eat normal foods after about two weeks or a month.

I guess maybe it was because I was having difficulties getting liquids down and was nausea after my surgery. They said the nausea was due to the antisethia. I was just not tolorating liquids and such to good. Almost everyone I have talked to had difficulty in swallowing liquids and problems with phelgm and getting choked. I don't know maybe it was due to my case history or something.

However, I am doing good. I still can't eat normal foods yet. I eat oatmeal, pudding, potato soup, baked potatoes, chicken and dumpling soup and am adding to that each day. I finally got a little meat down. It was some slow cooked tender chicken wings that where BBQ'd. Boy oh Boy was that ever good.

I had Dr. Berke's surgery in April 2000. At my one year check-up, my cords were found to be 100% reinnervated. I am very happy with my voice although it does not sound the same as pre-SD. My voice is softer and lower, however, it is strong enough that I have agreed to teach a Surgical Tech. class at Loma Linda University this coming fall. That is a huge improvement for me!

I had only one Botox shot prior to the surgery and that didn't help me at all. Even if it had helped, I just didn't want to face having to have this procedure for the rest of my life.

I did experience trouble swallowing liquids for about a month after the surgery. Thicker fluids and a soft diet worked well during this period of time. I found it easier to swallow if I bent my head forward.

It took about 4 or 5 months after the surgery before I could project my voice loudly enough to be heard in a noisy room. I am now at the point where folks who do not know about my previous speech problems are totally unaware that anything is wrong.

As with all surgical procedures there are risks involved. Drs. Berke or Blumin will be careful to spell all that out for you if you are interested in having the procedure. There is also a great deal of information on this BB posted by many of us who have had the surgery. Some of us have had wonderful results, and others are less pleased. This is a decision you will have to make on your own.

If you would like to hear my voice for yourself, email me privately, and I will be happy to give you my telephone number.