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congenital fusion of cervical spine

AnonymousUserAAnonymousUser Posts: 49,550
edited 06/11/2012 - 7:30 AM in Neck Pain: Cervical
hi.. I also have a congenital fusion of C 5-6..i found out when i was 13 and dislocated my shoulder. They had told me then when i was older i would probably need surgery, well that was 30 years ago lol. I have had problems off and on all my life with neck pain, having to be careful what i did or lifted, cause i knew i would pay the next day. And the headaches..omg they are so bad, anyone else get the bad headaches?? Just recently i couldnt handle the headaches anymore and nothing was working for the pain, so my pcp ordered a mri. well results are in, i also have disk herniation at C4-5 with severe right foraminal narrowing, also at C3-4 i have spondylosos with right and left moderate foramonal narrowing...hmmm explains the bad shoulder and arm pain ive been having the past 3 weeks. this is the first i heard of that symdrome, keplers?? im gonna look into it...any advice on this would be great from anyone...the doctor i seen 30 years ago said only 1 in like 10 million have the congenital defect i have, i am so glad to have found someone that does...i go to neurosurgeon next week wish me luck.


  • Good luck at the surgeon next week. If you check out the FAQ section you will find a article preparing to meet with a spine surgeon. The article may help you formulate some ideas of questions and what not. If your like me i usually forget and loose track if I don't have things written down. My other suggestion is if they recommend a surgery to get a second opinion. There are many conservative treatments out to aid in dealing with the pain. Surgery should always be used as a last resort. I have never heard of keplers syndrome so be sure to write it down and let us know what you find out. Good luck and welcome to spine-health.
  • Hi Allie,

    I found out at age 40 that I have a congenital fusion at c4/5 that I never really knew I had. The discs above and below have had to work overtime for the lack of mobility in that area. I have herniated discs at c2/3 & c5/6 & happen 2 have 2 in the T spine also at 5/6 & 8/9. I know of 2 other members in here with congenital fusions in addition to us. I am told that having 1 level fused is considered a mild form of klippel- feil syndrome. Many drs aren't even familiar with the name of it. I have had lots of procedures done if you would like to PM me, I would love to help if I can.

    I am glo from Mass.


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  • I have 2 fused vertabres in my cervical, and lumbar spine. I also have numerous other birthdefects which I will share later. Just wanted to tell u with this illness u may be getting what is called occipital headaches thats what I have and I have them everyday so u may want to ask ur Dr about that. God bless, and Your in my prayers. I would love to chat with u more. I am on yahoo under ur_JOY_76542 if u use yahoo I would like to become freinds so we can discuss many other health issues we may have in common...lolol...God bless, and have a safe weekend...Joy
  • It's great that you can relate to allie, however why the big push to go away from Spine Health to discuss other health issues associated with it? I would think those are issues that are exactly what others here would like to read about in case it applies to them too. Spine Health also has an excellent chat room feature where other would join in and may also benefit.

    Welcome to Spine Health,

  • Hi everyone,
    It looks like this thread hasn't had comments for a while but I'm interested to hear how people are doing.

    I have congenital fusion in C3/4 and C5/6. My pain is minimal for now (I'm 30) but I'm curious about exercises etc. that I can do to prevent problems. I suspect yoga would be a helpful preventive measure. Has anyone come across other preventive measures?

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  • I am older then you, 51 and didn't find out about my fusion until I was 48. I have had problems with my upper spine periodically becoming painful since I was a child. I wish I would of understood more about my condition when I was younger. I have currently have severe painful arthritis in my spine. I am not willing to consider a surgery that was suggested by the Ortho surgeon, a pancervical fusion. He said he didn't think it would reduce my pain level But it is the only way he could see to stabilize my spine. If I lose bowel/bladder control or my stenosis increases maybe i would consider it. I am not trying to scare you.
    Definitely be proactive. Please try to find someone to help you while you are younger and less affected. I found the OS that I currently go to at a teaching hospital in my state. I am currently using medications and P.M. clinic to control my condition. If you look up my name you can read some of the previous posts from the few who have our condition.
    Severe DDD. Klippel Feil Deformity. Cervical Foraminatomy that turned into Lamy. I have tried so many treatments, therapy's and medications.
  • I am wondering how you are feeling now. What have you done for help for the pain? I was in a car accident in November. Teen driver texting and hit my head and got whiplash. Since then I have been haveing migrains and terrible pain in my neck. Never had this before! They did MRI's and found 14 bone fusions in my neck! They say I was born with this and the car insurance will not help pay for my medical expences! I never had so much pain in my life! I would love to hear from others that have the same problem as myself. What do you do to get thru the day?
  • hi
    I recently had an MRI and they say that

    There is a loss in disc height at C4/5 and ostephyte disc bulge seen at C3/4 and C5/6
    At C5/6 the disc bar narrows the spinal canal and compresses the spinal cord. There is associated Spinal cord signal abnormality.

    There is evidence of a congenital fusion at T4/5.

    At L2 there is a mild kyphosis.There is a patchy marrow signal abnormality within the vertebrae consistent with healing and there is some irregularity of the inferior endplate. The vertebral is relatively well preserved however. Presumably this is the site of the previous tuberculosis.

    It Is not clear whether the cervical spine involvement is simply due to degenerative change or a previously involved site

    Can you please let me know my status and any precautions i need to take.

  • gmpurple3ggmpurple3 Posts: 1
    edited 07/09/2012 - 3:41 PM
    Hi My name is Grace I'm not sure whether your still a member on here but i recently put a discussion on the neck pain forum...
    I don't know anyone with similar fusions like myself. So if you interested in getting into contact with me it would be great. I am from Australia, my personal email is gracie_may33@hotmail.com :)

    I was 19 when I discovered and was told I had a congenital fusion in my c4,5,6 cervical spine, mild kyphosis- scolosis & spins bifida occulta in c3,4,5 along with mild oesteoarthritis. I am
    Of small build and always have been. I'm 25 now and still a small build, I have been living with constant thought of my neck and whether it'll get easier and whether it could get worst. My lifestyle is abit limited no high impact sports no heels for long periods of time. Constant pain in my neck, limited movement in my neck. I have an appointment with my gp as I have concerns when I start a family whether my baby could get what I have? it makes me sad sometimes I had being restricted. Alot of people my age just don't understand it and was hoping that someone here could maybe help me out. Soon after I wass told about this I was referred to a rheumatologist. The thing I was most scared of was can I have kids. She said I could I would just experience more pain then the usual expectant mother. I can't remember asking about if my child could have a fusion also. Would really love to talk to someone who could share what they are going tho, types of pain relief u may use?? Thanks
  • Hi
    i have congenital fusion of c3/4 and an extra bone in my lower back (think i am the 'missing link'!) .

    i found out when i had neck pain when my children were small. was offered surgery then but risks were too high.

    56 now, and just had c5/6/7 operated on. 2 cages 1 top plate 6 screws, synthetic bone and cement. May 16th. i was also born with talepes of both feet and bones in hands not quite right. so consider myself lucky to have got to now before surgery.
    i dont know if its connected but also have an hereditary immune system disorder too. would be interested if anyone else has this?

    my doctors have never mentioned that these things are connected, i had never heard of Klipple fiel syndrome, so will go research.

    thanks for informative and interesting thread... wishing you all that today is a good day for you! :-)
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