Hello all - I am happy that I found this group - - I've just been diagnosed with opll after having 10 plus months of Numbness (very little pain) in my arms and legs, I've also begun droping things and having difficulty opening things like jars, etc. I was playing tennis regulary but am having problems holding the racket - it drops frequently - so my partners get upset - go figure. I lead a very busy lifestyle with 5 kids under 16 and the thought of being down from surgery scares me. My neurosurgeon suggests laminoplasty - at the c 3 - 6 region........I have an appointment scheduled for next week - with another group. I also spoke to chiropractor (who claims to be a neuro guy) - he did an adjustment - but it left me very uncomfortable...and my benefits don't civer much for chiropractic care. my questions are around the progression of this condition and how soon surgery should take place?? Having not a lot of pain - just the numbness and weakness - it's difficult to justify in my brain.............
any thoughts would be helpful!!
Thanks - Susan (Atlanta, GA) (48 y/o)
Sorry I haven't posted lately. I did have my annual exam last week. My doctor had never even heard of OPLL. I did take an article to him. He gave me two names of neurosurgeons in Castro Valley, CA, to get a second opinion from. Doctors that he said he would go to himself. Also, he said I should get a third opinion, too. My calcium and vitamin D levels are low, blood pressure is up, cholestral is high. Now I'm back on hydrochlororthyiazid. Doctor wants me to lose a few pounds too. I did lose two pounds and have about fifteen to go. The process is slow because I can't really jog or walk a great distance.
I don't know if this will help anyone of not, but I did come across an article in U.S. News and World Report's on Best Hospitals rankings for Neurology and Neurosurgery: http://usnews.com/directories/hospitals/index_html/specialty+IHQNEUR/
Here are the first 5 rankings:
1. Mayo Clinic, Rochester, Minn
2. Johns Hopkins Hospital, Baltimore, MD
3. Massachusetts General Hospital, Boston, MA
4. University of California, San Francisco Medical Center, San Francisco, CA
5. New York Presbyterian Univ. Hosp. of Columbia and Cornell, New York, NY
If the above link doesn't work, just let me know. I may have copied it wrong.
UCSF is where I was diagnosed. I plan to seek a third opinion too. I expect both opinions will agree with UCSF. In the meantime, I keep trying to do research. I just live one day at a time, hoping and praying someone will find a way to stop this OPLL from progressing. I also keep remembering that Dr. Gillum said not to wait too long as not all symptoms are reversible. It seems I'm at high risk either way: a fall or surgery.
I'm so glad I found all of you.