Dear Dr. Chen:
I have suffered for ten years with exactly what you have described, with no resolve. I have been diagnosed with BEB but my domenient problem seems to be apraxia of the eyelids.I have been seen by fourteen different physicians of all types. I was given Botox every three months for three years. I cannot tolerate Botox, as I feel that sand has been thrown into my eyes. With Botox I lost all ability to hold my eyes open. The only way I could see was to manually hold my eyes open. I could not get into REM sleep for constantly getting up to put drops in my eyes. I had to give up my career as an Assistant Director of Nursing because I could not see to work nor drive myself to work. I have been treated really bad by some physicians because nothing works. I have had two surgeries still with no resolve.
I have been to some of the best hospitals on the east coast. I think I was treated the worst at Duke University Hospital. I was offered nothing. I was
told that Botox was the only thing available. i sat in the office of the Neuro-opthamologist and cried; he had absolutely no compassion for my condition. I have been to Wake Forrest in NC. and Cleveland Clinic in Ohio Not to mention all the places in the Tri-Cities where I live. .Everyone wants to inject more Botox. I explained that Botox did not work for me. I became completely unable to function when injected with Botox.
It’s like everyone wants to wash their hands of me. My last surgery was October 14th of this year. I am told that I have a very unique case, that I don’t fit really anywhere based on diagnosis .Again, my surgery was unsuccessful.
There seems to be no relief for me. My case is unsolved, with no real diagnosis. BEB was the only diagnosis that came close. My opthomologist said and I quote, “You do not fit into a textbook picture of any diagnosis, you are like trying to put a square peg in a round hole.”
Dr. Chen, I am constantly hurting myself because my eyes are closed most of the time. I fell down my steps, hit the landing bounced into the air and fell about three feet to the floor, had the bathroom door not been open as my head and shoulders ended up in the bathroom, I probably would have broken my neck. I have fallen down steps numerous times. I have a chipped bone in my finger in an effort to catch myself during another fall, I walked into a car the other day even though I never go anywhere by myself. I get hurt every day by walking and bumping into things. I break things simply because I cannot see. I have vibrations in my jaw.
I will be honest, I have no money to come to see you. I just received a bill for $19,600, after insurance, on my last surgery. If you should have a research program at anytime I would love to be in it. Maybe there is something new that can be learned from my case.
Thank you for taking the time to read this. .
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