thank you for this web site. I have been reading all your posts for 5 months now..I suppose I didnt want to be official, whatever that means! I first started reading the posts at the bells palsy forum and learned alot, but having an AN is much different
December 26, 2005, I began to have numbness on the right side of my face. I had hearing loss in my right ear too, but really thought that what happens sometimes as you get older. Wrong!! My daughter and I went to the ER and after havaing an MRI, they told me I had something in my brain alright.The whole family came to the ER and we were told ,Its not good........Funny how even after hearing this, my biggest concern was to comfort my children!!!!!They were sitting in a line next to my bed crying. I will always remember this. I spent the night in the hospital and the next evening my wonderful knight in shiining armour (my neuro surgeon), told me it was an AN and I would be fine ......My 23 year old son cried and cried and cried..I must have been out of my mind, because after a few minutes of telling me how they would perform the surgery, etc., I actually told the Dr. to SHUT-UP so my family and I could hug and celebrate!
Three weeks later, I had my surgery. When I woke up in the ICU, I remember saying to the nurse, "I"m not dead yet!" After 10 days in the hospital, I was moved to re-hab. Because the Dr."s had a diffecult time (11 hours) in surgery, I came out with total right side paralysis and because of the long surgery i would loose my cornea. I was in re-hab a month because of balance problems, but was THRILLED when they said I could go home. That is pretty much when my night-mare began.... My neuro surgeon kept me on the steroids too long (almost 3months). I never slept, maybe 1 or 2 hours a night. Each night I would clean out closets, organize anything, fix everything. This went on so long that I became steroid psychotic. No sleep and all these steroids and one day I lost complete touch with reality.There arent words to describe this.. and my poor family...
Finally off the steroids, I started dealing with the paralysis and my cornea. I had a cornea transplant. THey surgicallly closed my eye, except the very middle. Seven months and still closed.
Because I was on such a high dose of steroids, I developed avascular necrosis. This is a nasty desease that cuts off blood supply to long bones in your body..I researched AN and found the top guy , Dr. Mont , in Baltimore, to perform surgery on my hips. He thinks I have about 10 years and I will need 2 hip replacements.
After 6 months I decided to make an appt.with my neuro surgeon. I told hem everything that has happened ...Big step because I really was angy with him. Two weeks ago I had an emg and I have no activity on the right side of my face. I have scheduled re-animation surgery for Sept.25 with a dr. Patrick Byrne, again out of Baltimore. CANNOT WAIT TO SMILE AGAIN!!t
People tell me how amazed they are, how great my attitude is, how they could have never gone through all this. And they will continue to...But they can never know what we know. I feel so sad right now for me and for you and still enough of me wants to keep on keeping on. Thanks for reading my story..
Pattibobatti
ps. I chose that name because when my son and his best friend were in high school
together, they were ALL the time saying that!!!!!!
