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Here's my story

RustybonesRRustybones Posts: 9
edited 06/11/2012 - 8:47 AM in Neck Pain: Cervical
broke neck in 80, had c6/c7 fusion...no plates...no screws bone graft from hip...wore no collar at all during recover (dr said a little motion encouraged healing...had a complete and SOLID fusion in 6 months....no problems after one year ...back to doing everything...no pain...recovered 99 percent of strenghth and function from nerve damage....two years ago...started having pain in wrist and arm...after months of no diagnosis....I suggested they look in my neck....found lots of stenosis and one giant bone spur at the c5/c6 level ...this May...had surgery...they removed the bone spur that had pierced my spinal cord (was getting spastic in both legs)....two weeks prior to surgery...got an occipital headache that ran a a sharp pain from the base of my head on the left side up the back of my head behind my ear over my head into my left eye...felt like a nail sticking in my eye...causes flashes of light...leaving me with almost no vision in that eye and ultra sensitive to light and sound like a migraine....this headache continued for 14 weeks non stop...I rarely slept except when so exhausted I collapses...was sent to PT...but after 4 visits they refused to treat me, because they said were doing more damage than good....surgeon after 12 weeks sent me to a pain specialist....who did an epidural injection at the c6/c7 level...and two days later...the headache stopped and has not returned....I am still having arm and neck pain at this point on the left side...so we did a second injection....the left side started to feel some better, but the right side started feeling much worse...so two weeks ago I had another round of injections on both sides...however the left side was aborted when they hit an artery....I am still no better...in fact...except for the improvement in the use of my legs...and the bad...mean...nasty...worst headache on this planet being gone...and I am forever grateful for that...I'm actually worse than before my surgery with the neck pain and the constant spasms...in fact I have a new problem...I'm getting spasms in my throat and face...my throat gets hot in the back and I feel this terrible pressure...almost like having the mumps...I thought I was having a heart attack...I'm currently on Flector Patches, Bacifen, lidacain Patches, a drug for tremors (forgot to mention I shake) and my handy Vicadin fornthose moments when it wakes me up with good old foot stomping pain...had stopped taking them when the headache left...but the doctor insisted I keep a refill on hand...and for me to quit trying to prove how toughen am...saidni was the only patient he's ever had that he had to insist I take my pain meeds. He wants me to give every thing 4 weeks to try and calm down...but he said after what he noticed on the fluoroscope while injecting me...I still have some severe stenoses on both sides at three levels...and I may need another surgery for that...why that wasn't addressed before...I don't know...why I was told that using cadaver bone and a plate and wearing a hard collar for a few weeks and then a soft collar for several more...was a better option than the way I was treated 30 years ago...I don't know...considering...my disc are just starting to fuse a little.....go figure....sorry for the length, but that's my story...and I'm sticking to it....please forgive spelling errors.


  • You certainly have been through a lot. I had the same symptoms before C5/6 was fused in 1/08. The only time they return is when I do too much of an activity that involves bending my head forward.

    Are you able to go for another opinion regarding your neck? It sounds to me that a second opinion would be well worth going for.

    I found that water therapy was helpful with my neck.

    Also, have you been diagnosed with cervical myelopathy or another chronic pain condition?

    Best wishes,

  • Did you have the weird throat symptoms too?....I was diagnosed with FM when I was 18' but a few months later my doctor at the time who was also doing back to school to become a "shrink" ...told me then word was out amongst the "head case gurus" that it was all in your head....and I have never had anyone else examine me for that...I hate doctors...I just deal with the flares my own way....but I know from what I have read that is something I have....I have been tested for lupus...negative...and RA (runs rampant on both sides of family)....was told I had a couple of indicators that might point in that direction, but most of the blood work said no,,,the doctor then followed that up by saying...."not yet."
  • I have rheumatoid arthritis and yes had throat symptoms. A consult with a rheumatologist again sounds like a good plan for you. It's frustrating I know. It can be very difficult to pinpoint a chronic pain diagnosis.

    Good luck!

  • sunny1966ssunny1966 VIRGINIAPosts: 1,385
    Welcome to spine health.

    I'm sorry you're having so many problems. I agree with Marianne that a second opinion would be a good idea. I hate going to doctors too but sometimes we have to.

    I hope you can get your pain under control because I know how very tiresome it is.

    I hope you find this site and the members as helpful as I have.

    Good luck
  • Hi Rusty,

    First let me say welcome to spine-health. As you can see there are many in the same boat as you, including myself. So the one thing we do is understand the pitfalls with spine issues.

    I got a kick out of the vicodan. Went through the same thing with my doctor, felt like I made a deal with the devil when I finally caved and said okay. But have pain to high is not healthy either. For myself it was directly effecting my blood pressure. Once the pain was under control so was the blood pressure. Not to mention your body just can't heal when the pain is to high.

    Sounds to me like you need some new films to see what is going on. How long has it been sense you seen your surgeon? As someone who has been in surgery for the cervical spine multiple times I definitely feel your frustrations.

    Just thought I would stop by and welcome you to spine-health. Take care and keep us posted.
  • It has been about 9 weeks since I've seen the surgeon....he told me the surgery was a success...and that is when he sent me to the pain doctor....the pain doc did say at the end of the next four weeks....if I'm no better he will contact my surgeon...and give him his opinion on the stenosis situation.
  • Hello Rusty and welcome to our wonderful yet painful group/family!! I understand your pain....I have only been diagnosed and had lumbar spinal fusion over 2 years ago but I got hit by a car when I was 9 and have had major back issues ever since.....

    I have always just dealt with the headache/neckaches and my ribs popping out of place....and the numb/over sensative area that covers my left shoulder blade....

    So as you can tell you have joined a group that TOTALLy understands what you are going through!!! Welcome and feel free to PM me if you need to talk or scream or just rant/rave!!! :)
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