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Paediatric C1-C2 Fusion

Hello Everyone,

Our daughter was a healthy 8 year old until a case of Strep Throat followed by antibiotics caused inflammation severe enough to eventually dislocate her C1-C2 vertebrae. At the time, no one knew and she was diagnosed with torticollis, which is severe muscle spasm of the neck. That was back in November 2012. We saw several specialists - ENT, physiotherapists, chiropractors, acupuncturists. However, the orthopaedic spine surgeon suspected there was more and ordered a CT scan. The results revealed atlantoaxial subluxation, or dislocated C1-C2. The name of this condition is Grisel's. It is a rare condition.

At the beginning of July 2013, she went under general anaesthesia, had manual manipulation to realign the vertebrae, and Gardner-Wells tongs placed in her skull to apply weighted traction for a week in the hospital. Afterwards, she was fitted with a traction brace (halo vest). The brace is meant to stay on for 3 months.

However, a little over two weeks after the procedure, the X-ray revealed that the C1 vertebrae has not moved back to its proper position. It seems that the transverse ligament is not tight enough to pull the C1 back into place. The doctor has recommended C1-C2 fusion. Knowing nothing about it at the time, the procedure sounded severe. Now, I am wondering why such a life-changing and severe procedure for such a young child who should theoretically heal well as she is growing and can repair damaged ligaments?

Mom at a loss


  • AllMetalAAllMetal Posts: 1,189
    edited 08/01/2013 - 11:30 AM
    You and your daughter has been through so much. Sounds like such a night mare. I have no cervical issues, so I can't speak much about that at all. I would think though that a fusion at this point wouldn't be much worse from what yall have already been through. I hope you have found a great pediatric hospital and neuro (or ortho) surgeon. Please keep us in formed. Yall are in my prayers.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • I guess you would be the person to ask about surgical procedures and recovery. Were there any post-operative pain issues? What would you say is biggest thing to be aware of regarding spinal surgery?
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  • I really do hesitate to say too much about surgery because as I said, I have never had cervical issues. What I can tell you is that my first spine surgery I was 9. My parents found a great pediatric surgeon and I was treated at a pediatric hospital. Yes, obviously there was pain afterwards but truthfully the recovery went very smooth and very quick... that's one of the great things about children, they heal rapidly. I've said in other posts before, I truly believe parents have it the hardest. You should try to keep that in mind, through it all... no matter how bad it is, you need to remind yourself that in your head its much worse because its your baby.

    I'd say the biggest thing to be aware of is, do you have a quality surgeon that you trust and will any procedure be done at a pediatric facility (rather its a full pediatric hospital or even a pediatric wing).

    Please let me know if you have any more specific questions. God Bless
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • We do trust that our surgeon would be the person to do the job. I guess I am wondering what other alternatives there are to surgery... or am I just delaying the inevitable.

    That said, I see that you were nearly the same age as my daughter when you had your first surgery. Did you have additional surgeries because you were growing and they had to go back in and adjust/replace the metal pieces with bigger/longer pieces? I guess the question is, for young children, does it require repeated surgery as you grow?

    Thank you for being out here. I am grateful for your insights.
  • My son is 16 and had the posteria C1-C2 fusion and bone graft 6 weeks ago, he was apparently born with a broken C2 vertebrae and his neck was very unstable unknown to us until 8 weeks ago when wrestling with a Nate lost all feeling in his body for about 10 minutes. Feeling returned and I took him to dr then a ct scan revealed the problem. He was in hospital for 3 days , he didn't need a neck brace post op. he is in no pain and takes no meds. He can't return to school for st least 6 mths. No sport no going out unless we supervise for 1 year. Hoping the bone graft takes so he can go back to school next year. You must be very frightened, I know I was. Because of SAMs age and he is still growing they cannot tell if the operation will last his life. Sam was the youngest person to have this op to the surgeons knowledge but your daughter is much younger. My thoughts and prayers are with you.
    D galton
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  • Thank you for sharing your story about your son's C1-C2 fusion. I am glad to hear that he is not in pain. I think that would be hardest. Wow, a year without school is a big one...

    We will keep you in our thoughts.
  • SamsmumSSamsmum Posts: 3
    edited 08/16/2013 - 2:25 AM
    Thanks nancyvo, it was very traumatic but we keep reminding ourselves that this is SAMs journey and its harder for Sam . I find it comforting to now there are others out there who have gone through the same op. we felt so alone when it was happening cause the neurosurgeons were saying they do very few if the c1-c2 fusions.
    D galton
  • Nancyvo is there a way to contact you? This sounds like a very similar situation that I can use some more information on.
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