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Klippel Feil

nmacnnmac Posts: 112
edited 06/11/2012 - 7:23 AM in Neck Pain: Cervical
Does anyone else know about this or have this condition? It is a congentially fused section of the spine. I have researched it on the web and my Neurosurgeon mentioned it. It did result in some complications during my surgery. I have posted about it before without any response. You never know who will be lurking here.
Severe DDD. Klippel Feil Deformity. Cervical Foraminatomy that turned into Lamy. I have tried so many treatments, therapy's and medications.


  • But I have never heard of this. I wish I could offer some information.

  • Hi Nancy, Not sure if youve read my post yet, but i have klippel feil syndrom. Rare, one in 42,000 and it caused trouble in my surgery too even tho they knew about it. My neck was so crooked they didnt know where to start cutting bone, lovely. Took 6hrs instead of 3, not so good.
    Have you learned more?
    Fusions, other spinal anomolies, hearing loss possible. Duanes syndrome possible(paralyzed muscle in the eye) and extra ribs, had one 6inch one removed. I have duanes but not the hearing loss. there are many other things that can go wrong with it, but its not common enough to get a ton of info. How are you doing?
    Sincerely, Barb
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  • I have not formally been told that i have KFS, but i have congenital fusion in my neck, (C5/C6) I also have profound deafness in my right ear since birth and i feel i need to take this further and get a diagnosis.

    I have finally just been xrayed after having tingling in the arms, 'heavy feeling' and numbness on and off for years - treated with injections and was told i had De Quervains Syndrome and to live with it. The results from the xray have just come back and i really don't know where to go with this... Doc says i need physio and they might refer me to a surgeon - will just have to wait and see i guess, but will definitely mention KFS when i next see the doctor.
  • Hi guys,
    I also have c5/6 congenitally fused. I have read all about KFS, as far as I know I have no other defects. My c spine is incredibly weak due to the fusion. I am pain all day most days and just had a bout of steroid injections which I'm sad to say didn't help. My next option, ironically to strengthen my spine is to have multiple level fusion as at 27 years old my discs have degenerated like a 60 year old. It's been 10 ling years of finding answers, many doctors here in Australia won't help me! I wish you the best, please feel free to write back, I'm interested in hearing more about your symptoms as I dont know many people with congenital fusion
    Take care xxx
  • susabellssusabell Illinois Posts: 241
    Hello-This is interesting, I was told that I had carpal tunnel after my neck surgery (my right thumb would lock up). I had a emg and they dr. did not think I had carpal tunnel. I did have the carpal tunnel surgery and it did not help. I went to a hand surgeon and he told me I was mis diagnosed. I had De Quervains and he corrected the problem I have no more issues. My neck surgeon was very impressed with the hand surgeons work. As for the surgeon that mis diagnosed me, which was one of his collegues not so much. I have learned to get 2nd opinions.
    I hope you get some relief. Keep us updated. :)))

    ADCF C4-7
    L4,L5, DDD
    ACDF C4-C7 5/13/2010. Synthetic Bone Graft Failed Fusion.
    PCF C4-C7 8/13/13. Rods and Screws Fused in 3 Months with Autograft.
    C6-C7 Spineous process Surgically Shaved Off 3/11/14.
    Sciatica 3/11/16 Left Leg prescribed Medrol Pack 6 days also Physical Therapy.
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