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Nothing is working - Can't live this way

AvaWellesAAvaWelles Posts: 31
edited 06/11/2012 - 8:56 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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Comments

  • dilaurodilauro ConnecticutPosts: 9,722
    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 Spine-Health System Administrator
    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
  • dilaurodilauro ConnecticutPosts: 9,722
    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 Spine-Health System Administrator
    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.
  • 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.
  • Ava,

    As I read your reply, my foot (figuratively) kept digging in the dirt, and my teeth stayed clenched. What you've posted is so close to what I was told. I guess some in the medical profession feel "their word is God"...and never should it be doubted? Grrrr...

    I just know my body never went to medical school, but wow, is it great at telling me something is wrong! (G) Stick with it woman!!! *HUGZ*

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • im sorry you are suffering so badly.=(

    i just wanted to give a reccomendation for a good muscle relaxer.

    i have also tried all the same muscle relaxers as you, and none had worked. i was finally given Baclofen. it is an anti-spasmatic usually given to people for MS, for muscle spasity. it works great for me.

    i know that alot of the pain i feel is from all the muscles tensing up and spasming.

    the first time i took Baclofen, i felt like i had taken a pain-killer, because all my pain disappeared. it does not cause any sleepiness or dopiness, it just works.

    my brother-in-law, whom also has alot of back issues, also takes it, and it works very well for him too.

    it's worth a try... i hope you can find some relief soon.
  • Thanks for the suggestion, but I was prescribed Baclofen early on when the spasms first got really bad and ended up with a severe headache. The same thing happened when we tried Neurontin. And I mean SEVERE headache, like I felt I was going blind and my skull was fractured.

    I am glad you found something to work for you! Meanwhile, it looks like my current spasms/swelling have some deeper cause and I am going for further tests to see if it is an infection.
  • Aviatrix36440 said:
    Ava,

    As I read your reply, my foot (figuratively) kept digging in the dirt, and my teeth stayed clenched. What you've posted is so close to what I was told. I guess some in the medical profession feel "their word is God"...and never should it be doubted? Grrrr...

    I just know my body never went to medical school, but wow, is it great at telling me something is wrong! (G) Stick with it woman!!! *HUGZ*

    Brenda
    Thanks Brenda! You know, I have heard (and experienced!) that surgeons are the worst when it comes to having a God complex. I am going to stick with it, though, and not let anyone bulldoze me. If I had done that before, I wouldn't have had my facet joints disintigrate and additional disc damage before they finally realized they had to go back in. Hopefully this time the additional damage won't be as bad.
  • AvaWellnes,
    Hope your tests reveal nothing serious or chronic.
    By the way, why don't you try to work with your body? May be PT, personlized yoga, etc. Increase strength of the muscular structure in the body that supports spinal lumbers and all other joints for that matter. Be stronger and you will notice that you no longer need any medicine and you can stay healthier for the years to come.
  • Hehehe..I guess with some surgeons that deal with life and death issues might be part of it. Fixing someone severely injured in a car accident, heart transplants, brain surgery, or for many of us, helping keeping us spiney types functioning. :)

    I think too, like athletes, we are willing to pay them the big bucks for their skill set, so....:)

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • csuyash said:
    AvaWellnes,
    Hope your tests reveal nothing serious or chronic.
    By the way, why don't you try to work with your body? May be PT, personlized yoga, etc. Increase strength of the muscular structure in the body that supports spinal lumbers and all other joints for that matter. Be stronger and you will notice that you no longer need any medicine and you can stay healthier for the years to come.
    Thanks for the response, and I have been working with my body (physical therapy, acupuncture, meditation, vitamin/mineral supplements, healthy diet) for all the years this has been going on. I think I said in my original post that I don't take pain meds because they don't help me. This is all following two major cervical spine surgeries (one anterior, one posterior), so -- unfortunately -- my problems are already both serious and chronic. And the tests results have revealed additional problems.

    Going natural and working with your body is great advice generally, but when something inside your body is broken, infected, or worse the things you suggest are sometimes not realistic or safe.
  • dilaurodilauro ConnecticutPosts: 9,722
    Cant live this way?
    I've heard this so many times.
    But stop in think about everything, the entire big picture. What really are the alternatives?

    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • dilauro said:
    Cant live this way?
    I've heard this so many times.
    But stop in think about everything, the entire big picture. What really are the alternatives?

    I suppose saying I can't live this way (or all the other times you've heard it from others) does not mean literal biological living and breathing, but the type of life you have if you are not in pain or if your pain is managable. A life with hope, joy, fulfillment in work and personal life, etc. It is hard to face the deterioration of your own body, especially when that deterioration is coupled with extreme, unpredictable, and unmanageable pain. Naturally, no one wants to live this way.

  • dilaurodilauro ConnecticutPosts: 9,722
    Some folks may be using the 'living' term in a literal sense and figure there is no use in living the way they are, so they look to end it.

    Those are very serious situations and I only wish we had people here that could help in those matters. At best, we can only point to the Suicide hotline numbers.

    But for the majority of folks here , its about a loss of their previous lives. At one time a person may be able to do this and that, and then after some spinal problems and surgery(s) they find that they are no longer productive.

    Productive in their prior sense. But each of us can always stay productive. In fact, its more important for people who deal with chronic problems/pain to work harder to stay productive and give so much back to everyone.

    I can not tell you how many times I have heard:

    - I can't drive
    - I can't snow ski
    - I can't lift my children
    - I can't go out to dinner
    - I can't, I can't , I can't

    What is so very important is to drop the 't and figure out all the ways you can do things. It might be somewhat different then before, but then again it could even be more fulfilling.

    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • dilauro said:
    Some folks may be using the 'living' term in a literal sense and figure there is no use in living the way they are, so they look to end it.
    I have to say during this long journey there have been times I wished I could die. My injury was the result of a reckless driver who almost killed me. I have often said that I wish they had. I think having some sliver of hope that through my own research, through doctors, through alternative therapies, through medications, or whatever, that it will get better is what keeps me asking questions, advocating for myself, and reaching out for peer support. Unfortunately, during the worst pain spikes, that sliver of hope is extinguished and sometimes I don't even feel human anymore because the pain is so bad. It helps to know other people have been able to get through it or, at least, find some way to reform their lives to accomodate it.

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