I Had the DBS Surgery and Haven’t Looked Back
My experience with DBS Surgery was in this magazine in July, 2007. Hard to believe 8 years have gone by. My DBS Surgery was 9 years ago in September, 2006 at Vanderbilt in Nashville, Tennessee by neurosurgeon Dr Konrad. I had anterocollis (head falling forward); I had 3 years of botox injections an no quality of life. With the help of my husband’s research and Dee Linde’s Bulletin Board, I finally had to go for DBS Surgery. The programming took about 2 years to reach its maximum benefits and I haven’t looked back!
I had a battery change in 2010 and another one in 2014. With the battery changes, I only seem to be doing better and better. My only limitations are that I don’t do anything where I could fall.
I was 59 when dystonia appeared, 63 when I had the surgery and now am 72.
I have been doing yoga since being diagnosed with dystonia and I truly believe it is one of the reasons why I have had such success. I can golf, bowl, garden, etc.
I never needed botox for my neck after surgery, but I needed botox for my blepharospasm every 3 months.
With this latest battery change in 2014, I haven’t needed botox for my eyes; it seems like my blepharospasm has gone into remission.
We just arrived back from Howard’s symposium in San Antonio, Texas. What a great venue! This was my 4th symposium, the first being in Albuquerque, New Mexico, the Baltimore, Maryland and Atlanta. This won’t be my last! My husband always wanted to see San Antonio, so the symposium was a great opportunity to see the famous Alamo and the great River Walk. What a great time to meet other great people with dystonia. I am always amazed to meet people with so many different forms of dystonia. When I spoke with Janet Hieshetter, the head of the Dystonia Medical Research Foundation, she gave me a BIG HUG when I showed her my before picture. I took every advantage to show my before picture to as many people as I could, hoping that it would give encouragement to those looking for ways to get help.
Dr. Montgomery was also very amazed at my progress and encouraged me to write another article since I’ve had such success with DBS Surgery.
My husband, Don, wanted to see San Antonio and I wanted to see if I could help just ONE person, the trip would be worth it. I’m not particularly fond of flying, but I am so glad I decided to go to Texas.
Howard is such a great host and such an inspiration to all of us with dystonia.
My mom and I wanted to thank you for hosting such a great symposium this year. This was our third year and we are looking forward to next years. E. Mathews