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Nothing is working - Can't live this way

AvaWellesAAvaWelles Posts: 31
edited 06/11/2012 - 7:56 AM in Neck Pain: Cervical
I am 7 months out from posterior revision fusion. My original fusion broke on one level, the facet joints "disintigrated" (according to the surgeon) and the instability caused the disc above the fusion site to give out. The revision was very, very painful, but I thought it was going to help in the long run.

Instead, I am in muscle spasms so severe everyday that they spike headaches which push against my eyes and make my skull feel fractured. Sometimes my entire neck swells up.

I have an MRI and Cat scan scheduled so they can see if there is an infection or fluid build-up or something going on with the muscles. My bloodwork showed a very high sedimentation rate, so they thought this was one secondary indicator.

Meanwhile, I have tried every pain medicine commonly prescribed and none relieve the pain -- and most of them cause the headache portion of my spikes to get worse.

The muscle relaxants often do the same -- I end up with a headache all over my head, not just back of skull and behind my eyes.

I just recently was given Opana to try for pain and it had no affect and also made the headaches worse. I learned this after only two doses.

I tried morphine in the lead up to the surgery and it didn't work, but I am thinking of trying it again. I have heard that over time some things that didn't work in the past may work later.

Does anyone have any thoughts on pain meds or muscle relaxants? So far, I have tried Percocet, dilaudid, norco, nucynta, opana, vicodin, morphine, and many others. Usually I am only able to take a dose or two before I realize it is making the headache pain worse.

For muscle relaxants, I have tried zanaflex, valium, soma, skelaxin, robaxin, klonopin, and a few others I can't remember. Same thing. A few doses and the headache becomes worse.

As a result, I have a vast amount of full bottles of useless medications. I feel like this is the best I will ever get and I can't imagine living my life this way. The spikes last longer and longer, begin to calm after about 6 days, and within about a day a new spike starts again.

I have also been to physical therapy, which consistently triggered severe spikes (which never happened during physical therapy after the first surgery), and to acupuncture. I use ice, which gives some relief, and I use heat daily as well. Right now it is like a ticking time bomb.

I really think my life is over at this point. Does anyone have any suggestions of what to do?

Sorry for the long post.
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13

Comments

  • dilaurodilauro ConnecticutPosts: 11,348
    Take a look at:
    In error, looking for correct url
    That is just one of the many posts out there that help teach us to never give up
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Ron- That link does not work.
    ACDF C4-5 June 23rd, 2011

    Another surgery in the near future. I am 26 years old.

    Current Meds- Norco 7.5/325, Cymbalta 60mg, Gabapentin, Adderall 20mg
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  • dilaurodilauro ConnecticutPosts: 11,348
    I had made a name change of that thread and now, I cant find it....
    Unless I screwed up, I should be able to find it again
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • I'm very sorry to hear your revision status. As you can see, in about 5 weeks I will be going through a 5 level fusion (2 levels are the failed ones - revision), and due to calcification, he is going to do lamies down to T1.

    One of my fears with this surgery is having another level go - given the odds at 5-6 levels, that does scare the yahoo out of me. What you're going through is in my mind and has been once (like you) it was determined that most of my neck was now unstable due to the fusions failing and breaking.

    I'm one of those stubborn types, and been through varied levels of neurological issues and yep....the pain and headaches that just won't go away. I wouldn't be giving up, I would use that energy to research and try to find either a new surgeon to figure out what is going on (I am now with a top Orthopedic spine surgeon), and too pain treatments and blocks. There has to be someone out there, it just might take a while. It took me 2 years to find the surgeon I have now - it doesn't always happen overnight.

    I just know that basically an 'average' (whatever that is) car accident can break my neck - can't live like that. So surgery isn't an option. If I wasn't a smoker I would have had surgery almost immediately, but by the surgeon and insurance, "6 weeks smoke free" - so almost half way there!!! I tossed this in Ava just to add that NO ONE should give up okay? Please keep us posted.

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Thanks for the response Brenda. I know healing and other solutions won't appear overnight, but the original injury happened a decade ago. The first surgery was 3 1/2 years ago, and the posterior revision was 7 months ago. During that time I was functional, albeit in pain. I finished college and grad school, got my doctorate, and then here I am in agony. I have a very high pain tolerance and am a pretty aggressive person when it comes to fighting the odds, but this has been going on so long and the pain has got to a level that is absolutely intolerable.

    I am in a major metro area and see a top surgeon and a very good pain management doctor too. I am still going through diagnostic tests, so hopefully I will have more information soon.
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  • Please never give up as these tests or even another Surgeon will be able to help you as technology is changing everyday and you can't give up hope. Have you tried lyrica or Cymbalta or Botox injections yet? I hear they have helped many with awful headaches. Topamax has been used also and I get headaches from some pain meds and take Maxalt for rebound headaches from meds.

    Have you had more tests for auto immune diseases that can cause inflammation and certain blood tests are done to diagnose this. Keep looking for an answer to all this.

    Right now I'm trying the Cleveland Clinic for my back issues to see how they will help and others like Mayo Clinic may have some options but hopefully your Surgeon and PM Dr. will be able to help control your pain.

    Like Brenda says it took her a long time to finally find a Surgeon to help with her neck issues. Take care and we're here to support you. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Thanks Charry!

    I appreciate all the feedback. I got my MRI results back and posted a new thread to get some feedback about that as well.

  • Glad to see you haven't given up. :) My "journey" began after crashing a helicopter ...although in some ways the wear and tear was well on its way due to years of being a gymnast, and then the military.

    My first cervical fusion was March 08, so we aren't too far apart there. I saw the issues with my neck a year and a half ago at 5 months post op, and was blown off. There is a part of me that is still mad over that, but I advised myself that I had to stick to my guns on what I think ....eg, something is not cool! Thanks to the delays, I've incurred nerve damage.

    The goal on this large revision/fusion at this stage is to stabilize my neck and hopefully stop further progression. I sometimes wonder if "slow" damage is worse than say an instant injury. I say that due to some doctors 'blow us off', or are out of their element, and don't want to admit it!! From what I found out multiple surgeries, and revisions tend to actually scare off some doctors.

    Keep up the hunt, and until or unless you are told, and too, believe ...that you are at your maximum medical benefit, keep up the fight!! :)

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • my surgeon, after the first fusion, said that it was so stable I would have to fall out of a third story window to break it. I believed this 100%. So, when the spasms and pain started, I just thought I was stressed and holding tension in my shoulders and neck. A few times I got trigger point injections and once in a great while I took a muscle relaxant. Over time, the pain got bad enough that I went back for another course of physical therapy. Finally, my neck actually started to swell! My doc ordered a Cat Scan and then (less than three years after the ACDF) we found out the the bottom level of the fusion had just broken straight throught and the facet joints had disintegrated. I was immediately scheduled for revision.

    Now, my surgeon is saying the same thing: it is fine, you have nothing to worry about, etc. But meanwhile my neck is swollen and spasmed like it is the end of the world. And now, sure enough, after actually doing diagnostic tests, the MRI has revealed something is not right.

    I wish I had advocated more for myself early on when I was in so much pain, but I really thought there was no way something could be wrong with the fusion. I just didn't know enough about it and I believed my doctors knew best.

  • I'm sorry you're in so much pain. I've heard that Topamax (topirimate) and similar anticonvulsant drugs can sometimes work very well for severe head/facial pain. My mother gets cluster headaches and Topamax helped dull them so that the pain was reduced to a more bearable level. Good luck, I hope you find some relief soon.
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