My name is Sandy O’Malley. My husband Don and I retired to beautiful Tellico Village just south of Knoxville, Tennessee in 1999. Being an avid golfer, I soon became involved in the Board of the Ladies 18-hole golf league. I also became very interested in gardening since we have a longer growing season than where we moved from in Michigan. I became the Vice President of the Tellico Village Garden Club. I walked four miles every morning with my neighbors before 8:00 am. I was extremely active until 2002 when, at the age of 59, my eyes started to blink uncontrollably.
I went to an ophthalmologist and was diagnosed with “dry eyes”, and with drops I would be fine in a couple of months. After several months the blinking was worse. After a year and 5 ophthalmologists, I was finally referred to an eye-lid specialist who diagnosed me with Blepharospasm. By this time my head was being pulled forward and downward. The Blepharospasm had deteriorated to the point where I was functionally blind. I was walking into walls and the corners of cupboard doors. I had to stop driving, golfing, gardening and walking. I totally lost my independence.
Thankfully, I had a very understanding husband. I was referred to a neurologist and was tested for Myasthenia Gravis, had an MRI and a CAT scan and everything looked normal. The neurologist finally concluded that I had Dystonia but was unable to provide any treatment beyond medication. My husband went on-line and was able to find a local neurologist who was able to treat both the eyes and the neck. She had completed her fellowship in Dystonia at Duke University. We were very fortunate to find her so close to home. The first time she saw me she said that I had Meige Syndrome.
For the next two years she prescribed various medications and injected botox in the area around the eyes and the neck. My eyes responded well but the neck was a little more difficult. My form of Cervical Dystonia was called Anterocollis (head tilts forward and down) and this is the difficult type to treat with botox because the muscles are close to those used in swallowing and breathing. I gradually started having swallowing problems and began to lose weight. My husband continued researching Dystonia on-line and as my condition worsened, he suggested that I might want to consider DBS (Deep Brain Stimulation). I said “How can I let someone go into my brain?” The subject was dropped.
Eventually, with the help of Dee Linde’s Bulletin Board, he convinced me that all of the people who had DBS performed felt that they would do it again in a minute. I realized that I had no choice. My quality of life was horrible. Don spent hours and hours on-line researching DBS until he was convinced that the team at Vanderbilt Medical Center in Nashville, Tennessee was leading the way in innovative techniques to shorten the process and reduce the risk. Their proximity to us was a bonus because of the emphasis on post-operative programming required. He e-mailed the head neurosurgeon, Dr Peter Konrad, asking how to start the process and received an immediate reply. We had a preliminary interview and evaluation in March of 2006 and I was accepted as a candidate. It took until August for the team to secure the necessary insurance approvals and schedule me for surgery.
Vanderbilt performs the procedure in three stages over three weeks. The first stage consists of outpatient preparation and brain scans. Stage two involves the insertion of the electrodes and is the only part that requires an overnight stay in the hospital for observation purposes. Stage three involves the running of the wires and the installation of the IPG battery pack. Everything was hooked up and I was turned on.
I couldn’t have gone through it without the support of my husband and the wonderful community we live in. I was on everyone’s prayer list. I had no complications. I’m still having trouble with eating but I can hold my head up, especially when I’m in a social environment. I’m doing yoga twice a week and walking a mile and a half in the afternoons when the weather is nice. I go to Vanderbilt every 6 weeks for programming of the neurostimulator. It’s a trial and error proposition. It’s not perfect, but I’m better than I was and I’m confident that further improvement is just a matter of time and patience.
Update : Sandy O’Malley’s story
I am now 64 years young and a little over one year post DBS surgery. I was 59 years old when Dystonia arrived and changed my life. Anyone who is contemplating DBS surgery asks “if I had it to do over again, would I?” I tell them yes, with no hesitation. I feel that I had no choice because I had Blepharospasm and Anterocollis (head pulling forward). Botox injections helped my eyes but not my neck. I couldn’t hold my head up. My quality of life had really deteriorated. I had to give up golfing, walking, gardening and driving so I took up yoga. A wonderful neighbor took me to class twice a week. My classmates watched me go downhill until the day I told them all that I was going to have this special surgery. I was very fortunate not to have had any complications.
As soon as I recovered, I went back to yoga but this time, I drove myself. Everyone was amazed at how they could see my eyes. The programming for Dystonia patients is such a trial and error process; it can take years to reach ideal settings. I still tire easily, but with the help of yoga and physical therapy, I am slowly getting my life back. I’m walking two miles every morning, I’m driving farther and farther on my own and I’m slowly getting back into golfing. If I hadn’t been doing yoga all along I firmly believe that I wouldn’t be able to do the things I’m doing now. Anyone meeting me for the first time has no idea that I have Dystonia or that I have electrodes in my brain and wiring running down my neck and chest to a neurostimulator placed in my abdomen just below my waist. I am 5’ 1” and 98 lbs so they chose to locate the neurostimulator in the abdomen rather than the upper chest area for appearance reasons. I am amazed and thrilled that I can swing a golf club without feeling the wiring at all. I know that I will always have Dystonia but the DBS surgery is giving me back a better quality of life.
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