| - "Need Information on the Moebius Syndrome" "Hello, my name is Chris Haynes and I am a senoir at Princeton Senior High in Princeton, WV. For my Senior Year, I am required to do a research paper and product in order to graduate. We are allowed to choose any subject to research. I chose the Moebius Syndrome to research because i am one of the few that has the syndrome. I am writing you to ask you for any type of information related to the Moebius Syndrome. Thank you for your time and i look forward to hearing from you." (editor's note: Let's help Chris to know he's in a growing group of supportive people who have Moebius syndrome - email Chris at [email protected]) |
| "Congestion and Moebius" HI Sandy!!!!!!!!! Well, no funny stories this time. I do have a serious question that needs an answer from some of our older Moebians. When I was younger, I was able to throw off the congestion from a cold or the flu without much of a problem. Now, in the last few years, the few times that I have caught a cold I have had to go to the doctor to get medication to get rid of my head and chest congestion. It seems to linger on no matter what kind of self medication or over the counter stuff I tried. I guess what I need to know is if any older Moebians have encountered the same thing as they have gotten older. I am 51 now. Thanks Sandy!!!!! James Holden [email protected] |
| - "LENGTH OF RECOVERY FOLOWING PLASTIC SURGERY IS UNPREDICTIBLE" "AM 42 YEARS OLD WITH CONGENITAL 7TH NERVE PARALYSIS & BILATERAL WEAKNESS OF BOTH EYELIDS. FOLLOWING RECENT CATARACT SURGERY, IT WAS DETERMINED THAT I NEEDED PLASTIC SURGERY TO ALTER SAGGING LOWER EYELIDS & THEN HAVE GOLD WEIGHTS INSERTED IIN MY UPPER EYELIDS. MY RECOVERY TIME WAS TO HAVE BEEN 2-4 WEEKS. IT HAS BEEN NEARLY 2 MONTHS SINCE THE LOWER LIDS WERE DONE. I STILL HAVE A GOOD BIT OF SWELLING IN MY LOWER LIDS. ON THE 4TH WEEK POST OP., I BEGAN TO HAVE DECREASED SWELLING OF BOTH UPPER EYELIDS. MY VISION IS STILL BLURRED, BUT BEGINNING TO IMPROVE. MY PLASTIC SURGEON NOW STATES THAT RECOVERY WILL BE LONGER THAN NORMAL BECAUSE I HAVE NO MUSCLE TONE IN MY FACE. THE SWELLING DOES NOT GO DOWN BECAUSE I HAVE NO MOVEMENT IN MY FACE. I WENT TO AN EYELID SPECIALIST THAT I TRUSTED. ADDITIONALLY, I WENT TO AN EYE DOCTOR WHO HAD PERFORMED ONE PRIOR SURGERY ON SOMEONE WITH 7TH NERVE PARALYSIS. WHICH HE SWEARS WAS SUCCESSFUL. MY EYE DOCTOR IS NOW CLUELESS ABOUT MY PROGNOSIS. PLEASE LET EVERYONE KNOW THE RESULTS OF ANY FACIAL SURGERY IS HIGHLY UNPREDICTIBLE NOT TO MENTION VERY INEXPENSIVE. BLUE CROSS BLUE SHIELD DID AGREE TO PAY FOR MY SURGERY BECAUSE IT WAS NOT CONSIDERED COSMETIC. THANKS FOR A MEANS TO ASSIST SOMEONE WHO IS CONSIDERING PLASTIC SURGERY. I WOULD BE VERY INTERESTED IN EMAILING OTHERS & IN SHARING ANY IMEDICAL INFORMATION ABOUT MY MEDICAL HISTORY THAT WOULD HELP OTHERS. [email protected] |