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Please HELP C1 C2 Fusion 25 years ago chronic pain

Hello my name is Heidi I was in an automobile accident 25 years ago- a drunk driver hit me from behind. I walked away from this accident only to go to the doctors the next day to get checked up due to I woke up the next day with a pretty bad headache. It was found that I had Os Odontoideum so doc put a cervical collar on me and set me to a specialist in Pittsburgh.

I had to get a cervical fusion at c1 -c1 with bone from my hip. About 5 years ago I started to have chronic headaches. I have been to several neurologist done physical therapy went to chiropractor and then pain doctors had different injections. Then about 18 months ago I had a permanent nerve simulator placed on both occipital nerves. Well that got infected where the battery was in my upper buttock and I had to have it removed. So this was removed and at the time it was put in - it was because I told the doctor the trial seemed to help at least with 50% with my pain so that was good enough he said for my insurance to allow. He wanted to put another in after I healed months later and I said no. I was 43 and the more I read about the simulators the more I thought I don't wanna do that again. So this neuro said he could not do nothing else for me! I wanted to get the nerves burned but he said no.

I started breaking down at this point and had to go back to work - the day I went back was to be full time I just broke down and cried and started packing my desk up because I knew I couldn't do it any longer. Well I was offered part time to see if that would help me and that way I was able to keep my insurance. I have been working part time for about 18 months now and I cannot do it any longer I'm not myself anymore I go to work come home and lay down for the rest of the day..

Well anyways here is what I'm struggling with now. I just seen another neuro and had a mylogram and it stated on the results:

"There is relative narrowing of the thecal space at the surgical level and the bony os. This is at or near the occipital foramen level."

"There is some minor posterior osteophytes at c5-6 and c6-7 with minimal impress on the thecal sac"

"There is as os odontoideum with a smoothly marginated fragment which is displaced slightly dorsally. This is similiar in appearance and position to the prior study.

What I need help on is I get a call from the nurse and she said the fusion is good!! Well I new that I have been told that several times over the last few years and that isn't what I really went to this neuro for. I think their is something else wrong and the physician ordered a ct and mri and then he said um I'm thinking there is scar tissue in their that may be pressing up against something so lets have a mylogram. So the doctors nurse said they didn't get all the results back from the mylogram yet so I wait another 2 weeks and when she calls me back again she advises me their is nothing wrong and that they want to try another cervical block and if that works then we can do a ryzotomy, which i did speak with the nuero about when I seen him the first time.

Im sorry if this is so long.. I have written on here before a few years ago under jo1124 I couldn't remember my id so I had to change my account name.

I am taking so many pills and I'm on a pain patch and I'm having anxiety and I feel like I'm depressed now which I was never depressed but I know I am now because I don't want to leave the house I just want to go to bed. I cannot keep up and if I do make myself go to work for that 5 hours I'm in tears when I walk out because of the headache is so bad by then, so I go home and take some more pills and lay down. Meanwhile I have two younger children that need me and I'm not being the parent I need to be. I literally feel like I'm going crazy I cannot keep doing what I'm doing. My mom and several other family member keep telling me to apply for disability and I do think that's going to be in my near future but I've always worked and I'm afraid. My husband makes less money than I do and I'm so scared that we will not be able to make it. When I mention disability to a doctor they seem reluctant to say ah yes you need to apply for disability. My pain physician thinks I should apply but he said he would rather see me working than on disability but meanwhile I cannot function without the medication that he is giving me, now I'm addicted to the med's.

I cannot seem to find somebody else that has had this type of a fusion so long ago. I see this type of fusion being done but I haven't came across anybody in common with me.

Please help I need advise. Heidi


  • SunshineKittySSunshineKitty Posts: 2
    edited 01/26/2014 - 7:23 PM
    I only just had a c1-2 fusion last year, along with a c5-7 fusion. I would say that based on your other MRI findings you should get a second opinion. I had those issues and had the fusion and diskectomy.

    Another thing to consider is getting an upright MRI (where you are standing vs laying down). These often show things others don't because of the effect of gravity on the body tissue. A herniation may be much worse for example when you are upright. If you get it done, make sure you also get a flexion-extension done as well. I would also check out Chiari Malformations. They can sometimes be associated with this stuff.
    Good luck!

    Link removed, solicitation not permitted.Please read the Forum rules
    Post Edited by Liz The Spine-Health Moderator Team
  • jellyhalljjellyhall Posts: 4,373
    edited 01/27/2014 - 5:56 AM

    I am sorry to hear how much you are suffering again with headaches.

    C1/C2 fusions are not very common although there are some members here who have had them.

    Can I suggest that you do a search for 'C1/C2 fusion' in the seach box at the top of the page.

    I can sympathise with how you are feeling. Having had a fusion, even though it was so long ago, then a Stimulator and now getting these chronic headaches is bound to pull you down emotionally. Add to that having children to care for and struggling to work, even part-time is all going to make like difficult for you.

    Even though I have not had C1/2 fused, I have had C3/4/5 fused and previous to that had a lumbar fusion. I understand the disappointment of still having pain and how it wears you down.

    It does sound like you have a Pain Consultant. I hope that you have talked to him (and your GP) about how low you are feeling and how after working 5 hours you are in tears and how you have to lay down after working. They need to know about how you are feeling before making any judgement on whether you should be working or not. I hope that they will listen to you and have a plan to help you.

    Please know that you are not alone. Although not many have had the same surgery as you, many of us have had neck surgery and are still suffering with headaches. We understand what it is like living with pain and the limitations that spinal problems causes. I hope being able to chat with others who are suffering alongside you will help and support you.

  • Oh thank you so much for responding. I was checking everyday to hear from somebody and it wasn't happening for awhile!!. I'm having one more procedure don't this Tuesday, its a ct guidance nerve block between c1 2 to see if it helps. Doc wants if it works to drill into my fusion to where the nerve comes out and cut it! Now I'm pretty scared to have them mess with a fusion that's been good for 25 years, I'm just not to sure about that. I have decided so file for disability I cannot keep going like I am I need to stop the sitting at a desk it just does me in. Its not fair to my kids that mommy is putting work first and then crashing when they get home from school. Plus the pills are taking its toll on me, I'm addicted now but there is nothing I can do. These doctors amaze me!! I think I know more about what my fusion is about then they do! I point out the narrowing on the report and they blow it off and tell me that wouldn't be causing my pain! I don't have a normal persons neck umm its gotta be doing g something I would think.
  • jellyhalljjellyhall Posts: 4,373
    edited 02/02/2014 - 12:21 PM

    I understand your concern about having your fusion drilled into. Has he explained how he expects it to work and what the risks will be? Could you get another opinion about this before you go ahead with it.

    I really hope that you will be able to get disability and have more energy for your young family. I am in the UK so don't understand how this works in the USA. (I assume that is where you are.)

    Most of all, I hope that they will find a way of dealing with your pain so that you are able to get back to being a mum to your family and enjoying life again.

    Take care :-)

  • Thank you all for your advice, will keep you posted. Having the ct guided nerve block Tuesday so we shall see!!
  • Did you have the nerve block Heidi? I've had two C1-C2 fusions (because one wasn't fun enough!)....the first one failed and resorbed. I've experienced ongoing headaches, and like you the blocks didn't work. However, I had two C2-C3 rhizotomies that worked wonders! My headaches were significantly better for ~5 months. I talked to my surgeon about severing the nerves also but she said that they might grow back, and if they did the pain would be even worse.
    Hang in there!
    April 2011 C1-C2 Fusion (Brooks wiring)
    January 2012 C1-C2 Revision Fusion (Harms Technique)
    2010 - current: Trigger Point Injections, Epidural Injections, Bilateral C2-C3 Radiofrequency Ablations
  • Hello Monica I haven't been on for awhile so I haven't updated. No I haven't had the nerves severed I had the test block thru ct guidance and I was so numb my ear and mouth was numb. So the neuro couldn't tell me if the final cut of the nerves would do this same thing. It was a terrible feeling, It didn't just go numb in the back of my head it went down the front of my neck and my jaw and mouth and ear was all numb. The physician couldn't guarantee the outcome. I decided not to have the nerves cut. I quit my job and I filed for disability. It was the hardest thing I've ever done. I've always worked and took care of myself but I just cannot do it any longer. I can at least be home in pain and not sitting crying at my job.
  • I lost my job also and filed for SSDI in January. It's been really hard to come to terms with losing my career.
    April 2011 C1-C2 Fusion (Brooks wiring)
    January 2012 C1-C2 Revision Fusion (Harms Technique)
    2010 - current: Trigger Point Injections, Epidural Injections, Bilateral C2-C3 Radiofrequency Ablations
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