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Muscular Dystrophy Surgery

Organized by: BL Murcer

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THE STORY:

I am asking help for several surgeries. I have a rare form of Muscular Dystrophy called Oculopharyngeal Muscular Dystrophy (OPMD). It’s a type that typically strikes in your 50’s or 60’s; I’m 62 years old. All MD is a muscle wasting disease and this particular kind affects the muscles in the face and neck, although it can affect other muscles as well. It can affect different muscles in different people and can progress at much different rates for different people. The first symptom is typically drooping eyelids. As the disease progresses the eyelids can drop until you need to tilt your head back in order to see. The eyelids can also drop completely. While there is no cure or treatment for MD, eyelid surgery can help you keep your vision for much longer. I am in need of that surgery as my eyelids have dropped significantly and I fear I won’t be able to see for much longer. I am on Medicare Disability for other health issues, and that is my only insurance. They pay only $200 per eye, but the surgery usually cost around $3,000 per eye, but I’m not sure if that includes after care. For me, this MD has not only affected my eyelids, but also the muscles necessary to swallow food. As the disease progresses you lose the ability to eat food, and eventually to swallow liquids, as well as your own saliva. According to Dr. Albert Merati, an associate professor in the Department of Otolaryngology – Head and Neck Surgery at the University of Washington Medical Center, the best operation for OPMD-related swallowing problems is surgical CP myotomy, which means cutting into the CP muscle. He says about 90 percent of patients respond to surgery to some extent and many do very well, although about a third return with symptoms three to four years after surgery, as their disease progresses. Dr. Merati was kind enough to refer me to several surgeons in my area. I am trying to collect enough money for these surgeries, although I want to put them off as long as possible since the return of symptoms in a progressive disease like OPMD is high. However, the rate at which my symptoms are progressing has increased and it is likely that I will need surgery before the end of the year. At this time, I have no idea what the throat surgery will cost, but I’m sure it will be significant. My symptoms began about five years ago, both with the swallowing issues and the drooping eyelids, but at the time the symptoms were mild and I attributed them to getting older and thought it was a nuisance I had to deal with. But now both symptoms have progressed and I need surgery on both my eyelids and neck. Although I occasionally have problems with other muscles, it has been only on occasion and not caused me any real problems.

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BL Murcer

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