Regarding a search for surgeons with an expertise in Klippel Feil Syndrome:
Dr. Jens Chapman, orthopedic surgeon at University of Washington Medical Center in Seattle, WA, has a sub-specialty in Klippel Feil Syndrome. He has been following my medical progress since 199. He is world-renown and sees patients from all over the Pacific Northwest, perhaps from even further away. Why don't you call him to ask if he knows of surgeons very familiar with KFS in your area?? I don't know Dr. Chapman's phone number offhand, but he is the Chair of Bone and Joint at UWMC/Harborview (both in Seattle), area code 206. My other thought is that maybe the American College of Orthopedic Surgeons could provide a referral.
Like many people with KFS, I've almost always had to educate a new doctor about this condition. It was a great relief to find an orthopedist and a pain clinic so familiar with KFS. I *would never* want anyone unfamiliar with Klippel Feil to treat this condition, especially not to perform surgery. My orthopedic specialist confirmed that I was correct in my hunch that I should not place my C-spine in the care of chiropractors. Basically, Klippel Feil Syndrome is tricky. In my own experience, health care professionals unfamiliar with the condition have done almost nothing to relieve my pain and in fact have insinuated that I was a drug-seeker. I had YEARS of undertreatment.
My story, if you're interested:
I am 58 and have a very short neck with fused and absent vertebrae and discs and a very limited range of motion. I overcame childhood mirror movement with no intervention beyond piano and ballet lessons, and by age three I learned to hold my head -- affected by torticollis and dystonia -- fairly straight.
I had neck and left shoulder pain on-and-off from my mid- to late-thirties. When the pain went from intermittent and bearable to chronic and severe about a year and a half ago, Dr. Chapman's physician's assistant ordered a CT Myleogram, a study where contrast dye is introduced into the spine through a lumbar puncture. The images showed additional wear and tear on fused, anomalous, and in herniated vertebrae/discs. Tests performed earlier, when I was about 45 and had my first full workup for KFS, included an MRI, an electromyelogram, and a test called something like an echo doppler, given to determine whether blood flow in my neck was constricted when I turned my head. It is desirable to get a baseline "picture" of KFS early in life -- in your 20s or 30s would be better than waiting until your 40s as I did.
My orthopedist's physician assistant referred me to the medical center's pain clinic, where the doctors, nurses, and P.A.s are very caring and careful. I've had mixed success with pain killers, as I have found the physical and psychological side effects of opioids very unpleasant. However, botox injections six weeks ago helped calm the spasmodic torticollis quite a bit and made it possible to hold my head completely straight for the first time in my life.
Good luck. I hope this is useful information.