Klippel-Feil Syndrome Support Group

Now that I know I have KFS, I need to see a specialist to run as many tests as possible. I don't even know where to begin? What type of doctor specializes in KFS?????

orthopeadic specialist is prob your best start

Thank you

I was told to see a Neurologist. This type of specialist will be able to determine if there is any damage to the spinal cord and/or nerves.

im my 12 years experience dealing with the symtoms of kfs, i would suggest, if money and or insurance permits, to seek multiple specialists staring with a orthopaedic doctor, followed by a neurologist, while at the same time seeing a anesthesiologist for the pain symptoms. the ortho doc might be able to help with detemining spine instability while the neurologist can run the tests need to check for nerve damage. personally with my case the anesthesiologist has helped the most using spinal injections, facet injections, and lately iv started botox for the insanely painful muscle spasms. as for finding a specialist for kfs im guessing our doctors we see must hit the medical journals hard as this is a rare disease and i have yet to find only one who even knew about this. so i would think a good doctor who is treating any one of us would like i said hit the medical journals and research kfs so they could provide the best care and treatments available. or to send us in the right direction, maybe mayo clinic or harvard medical school or something of the like. excuse me for rambling on as im am overtired and sleepy, but i hope this helps as i am also at my wits end for finding the best docs and treatments. goodnight or actually goodmorning. talk to yall later

I recently took my daughter to a genetics doctor who is getting her set up with an orthopedic doctor and neuerologist

the orthopedic and neurologist are pretty much a must to check for abnormolities and nerve damges also to see on a time to time basis for instabilities that may developat this time im seeing another ortho doc but hes lost at what to do. the report on my mri i did two weeks back was pretty poorly constructed and he needs the actual films to look at but i guess i do have two seperate stenosi in my spine at the fusion sites. the lower fusion is just a mass of bone that doesnt even move when i move my neck up and down, if lots of pain is apparent the best shot for relief is ananesthesiologist,otherwise known as the pain clinic doctor. hes the only one who can help with the pain and its an ongoing battle to keep the pain managed.

you probably need to see a genetics doctor he can get you the test you need

that would be incredible, can you give me the info on what they would do for me, i already have kids and i want to get them x rayed as thats how i found out by accident looking for something else by a chiropractor looking for sublixations od something like that when i was 18(didnt start having real pain until hit by car on dual sport dirtbike) got rear ended and fell to the left side into path of truck and almost got ran over. the woman said she didnt hurt me and tried to say i was a liar because i got right up and rooled out of way of truck

They can do blood work to see if your kfs is genetic and to see what type it is. I have been researching kfs since my daughter was born with it 26 years ago. I feel like I know more than her doctors do sometimes. I usually have to request that they refer her to specialist, because they really don't know what to do for her. She saw alot of specialist when she was little, but she got better and then started having other things come up in her late teens