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New problem after 8-level fusion and revision

To make a long story short, I'm age 54 and I am almost 3 years out from the first fusion, C2 through T3, and almost 2 years out from the revision for hardware failure (the angle/curvature of my neck was never correct and was getting worse.) I've had continuous, and probably permanent, issues with muscle tightness and irritated nerves. Trigger-point injections slightly help. I have tried to continue working, even though working is just barely about all I can do. When I get home, I am so tight and in so much pain that I can't do regular life "stuff". I've also had occasional issues at the bottom of the hardware, with pain there. My neurosurgeon said not to worry so much about that, that he would be more concerned with issues at the top level near the base of the skull/C1 area. Well, I hope I'm not having trouble there now, but suspect I am.

For the last couple of weeks, I've had pain at the top of my neck and up into the back of my head, on the left side. I tried to shrug it off as just the occasional aches and pains I have, but it has gotten worse. Woke up night before last with terrible, stabbing pain in the back of my neck up into my head and decided it was time to call the doctor. None of my medications touch the pain. Well, my neurosurgeon wasn't in, so his "nurse" called me back. I use the term loosely, as she had the nerve (no pun intended) to tell me to call my primary care provider, as a lot of people are suffering from allergies this time of year and that was more than likely what is causing my issues. As nicely as I could, I asked her if she would talk to the doctor about it. Seriously, besides having gone through what I have with my neck, I've been in the medical field for over 35 years and am a CT scan technologist who just happens to know a lot about anatomy and physiology.

Anyway, my pain got worse last night and is now also radiating to my shoulder blade and down the back of my left arm. I suspect my occipital nerve is either inflamed or being impinged upon by my tight muscles, arthritis or scar tissue. So I called again this morning and am waiting to hear if I can be seen today.

Has anyone had a similar problem?
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Comments

  • MetalneckMetalneck The Island of Misfit toysPosts: 1,778
    Annie Hello,

    Did you have post fusion CAT Scans to confirm position of hardware and confirmation of fusing at 6+ weeks?.
    I had similar pains after my first fusion - because I didn't fuse (non-union). With that many levels at once ...... Non-union is a greater risk.

    Keep us posted,

    Bones
  • CHOLMCCHOLM OregonPosts: 66
    Annie, I do not have any input I just wanted to say I cannot even imagine what you have gone / going through. I feel fortunate.
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  • Annie Hello,

    Did you have post fusion CAT Scans to confirm position of hardware and confirmation of fusing at 6+ weeks?.
    I had similar pains after my first fusion - because I didn't fuse (non-union). With that many levels at once ...... Non-union is a greater risk.

    Keep us posted,

    Bones
    I did have a CT scan after the revision, because I was having severe pain. Everything looked good.
  • Thank you, Cholm.
  • Well. just as I thought, my neurosurgeon pretty much diagnosed me over the phone with occipital neuralgia. We'll be setting up a nerve block with the pain specialist I see. Hoping it can be done quickly, in the office and that it will be successful and that will be the end of it.
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  • MetalneckMetalneck The Island of Misfit toysPosts: 1,778
    edited 11/03/2016 - 2:32 PM
    I never considered a telephone to be a robust and accurate method of diagnosing most everything.
    I need to the see doctors eyes and measure his heart rate as he spits out "helpful" procedures. Have you researched the surgeon and have you researched the procedure - risks - benefits - duration of relief??
    Nerve Blocks are usually temporary in duration.

    With Concern,

    Bones
  • Thanks, Metalneck. The surgeon is the one who performed both of my surgeries, so I do trust him. I have the injection scheduled for Tuesday afternoon and hope for some relief. I do have to say that the pain has gotten better in that it isn't constant. I even think of possibly putting off the injection, and then the pain starts again and I can't imagine not even trying the injection. From what I understand, it isn't a permanent fix, but am willing to give it a go. I just want to find out what is causing it. Any other option is very frightening and I'm not sure we can survive another huge hit to our pocketbook. Even with good insurance, we had huge out-of-pocket expenses with both surgeries.
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