I did, and the information and help I have found from those who experience these same things daily has been huge in finding some relief and a path to help when Drs come up empty. Another good one is from medlink it is a www and a just search it for klippel feil and then click on the clinical summary. Many doctors are already established and do not want to spend their time doing hours and hours of research for one patient when they will likely never have another like you.Not many know about the anomolies associated with KFS... Yes, ears, lungs, ribs, heart, and several other areas can be effected, and usually its NOT just the cervical spine and the pain can be beyond measure as I know well. I can understand that, but there is always one in the crowd who is interested.All in all the syndrom is managible, will definatly require that you know yourself well, and do your homework.if you have this problem, i have found that just about every doctor i talk to doesn't have a clue as to what it is or how to deal with it, that can be scary for most since those of us who have the syndrom need help and doctors don't know how or do little to research what they don't know.since the syndrom affects the neck and the nerves tranmisions in utero thats how you end up with bones where they shouldn't be and missing ones you need.So anyway im gonna get to that post and please don't hesitate to ask me anything, i plan to go to school for boilogy and open my own practice in alternitive medicin some time in the future.I have Klippel-Feil Syndrome, with alot more involved than just that.I can't find a doctor that will help me, that knows anything about my disorder, than understands what I am feeling, that will listen to me, & that won't keep trying to make me do things that my body isn't capable of & stop treating me like I'm a science experiment. No one will prescribe me pain medication, I've tried every kind of doctor imaginable, even pain management centers..of them that I've tried or called to talk to have told me that they don't prescribe medications to anyone anymore.
Further referral to a physiotherapist for spinal exercises could be beneficial and may produce relief of symptoms. I suggest you sign up at join the Klippel Feil Syndrome group and ask your questions. I suggest doing your own research and printing it out and taking it with you to all new doctors. First they have a good article on this site that you can print out.My family are brilliant but I too am loosing faith. Hiiii guys : P I'm 19 and I was diagnosed with Klippel-feil syndrome when I was only 9!:( I wanted a normal life playing sports and thingssss.i would say with this syndrom try to relax stress isn't helpful and i hope you all feel better!hi evryone thanks for sharing your story i just found out last year i have klippel feil and that i must of had it since i was 18 no one knew why i was in pain they all tought it was in my head the pain is now increassingly worse unbarable the neck sholders middle of my spine back and the lower of my spine back is all bone on bone one chunk and my bone in my lower jaw broke it pretty much a golf ball bone and they other side penny type bone i was born very sick low emune system heart murmur chronic kidney infections and bladder infections my canal in my left ear wasent develop the bone in front of they ea drum and in my right ear im only half deaf im finding out my rip cage and my skull bone where my forehead and eye is changing im on thc pills now cuz no other medication works build emunity to it but sometimes even that dont work im really scared as i dont know the stageg meaning how its all gonna break change and well loose how and also dont know how ill be effected by it in the way of breathing being able to eat and swallow how well i keep my head up or back up the nine yards and scared cuz it can cause organ failure my kidney is allready bad i have one working kidney and its on top of my overys they other kidney where it supose to be near the back but that never work dose klippel feil shorten a persones life and any ideas ??