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Need some help with nerve pain after FBSS

Hello all, not feeling well at all these days. Wonder why I even wake up at times because the pain is so intense. I don't wish to die, it is an expletive for the amount of pain that exists.

Since I was 28 and iam now 50. Iam not an expert in the levels of vertabral so please forgive my descriptions.
I have had 5 lower back surgeries up to fusion with a spinal fluid leak that was repaired a week after the initial fusion. Have had many problems since the bottom four vertabrae above the sacrum were fused. I also have a tumor in my T12 vert. If I may be blunt but since the surgery and scs trial over the last two years. I have found out iam allergic to morphine and it's synthetics. So I am relegated to Vicodin and soma as my pain treatment. One of the pedestal screws is not even attached to the rod anymore in the fusion area. The doctors will not work on me anymore, due to scar tissue.

The problem I have or main problem that makes me not want to wake up anymore is it feels as if I am sitting on a large flaming icicle, and the point is poised right at the lowest vertabrae and everything balances from there. It drives me so out of my skull I cannot even describe. I cannot sit, drive etc, and i was one of the most outgoing, fishing and partying animals out there. Now my life is tame as a lamb. Not even a beer for two years either as nothing even tastes right anymore. I have lost 85 lbs. since the surgery becuase nothing tastes right anymore but sugar and milk in coffee.

I have to wait for the pain meds to kick in before any relief is possible, and it only lasts for about two hours.

Anyone else with anything like this? Iam now really considering it a literal term "practicing medicine"

Please if I have made a mistake in posting here, forgive me but iam lost now and suffering is not even the right term in my opinion. I have left a lot out probably,but my mind is quite scrambled from the constant loss of focus. Please try not to judge me, iam just looking for some help. I have seen what many of you all have gone through and this looks like the ultimate place to get some support and possibly help. I feel for anyone going through any of this, it is unfathomable what it can do to you and you're psyche. Best to all and thank you for any suggestions or corrections.


  • I'm sorry you are going through so much...

    It really is hard to adjust to a life with chronic pain...especially when you've had so many surgeries and there really isn't too much more they can do as far as "fixing" things.

    I haven't had as much as you but I've had 3, two-level fusions...the last one they did anterior and posterior..I still have active, severe herniations in my lower cervical/upper thoracic and my lumbar region. Along with countless other surgeries in my foot, knees, and abdomen. As well as a pituitary tumor that was diagnosed back in 2006 but I don't have any insurance so haven't been able to monitor or treat this for years...

    So, just trying to say that I, and all of us here, can empathize what it's like.

    I don't see that you are on a nerve pain medication? There is Lyrica, Neurontin or Cymbalta. Pretty much everyone with disc/spine issues has terrible nerve pain and this is where opiates or muscle relaxers don't help at all. It needs that specific type of medication.

    So that is something I would try to get on asap to help.

    Are you being treated by an actual Pain Management Dr.? I would certainly find one if this isn't the case...or a new one if this Dr. is not wanting to find the best comprehensive plan to treat your pain..

    Also....there is Nucynta or the Butrans patch that is not derived from morphine...so have you tried either of these? They both come in long acting formulas so you wouldn't have to be chasing the pain every few hours with the Vicodin.

    And if the Soma is not working well for your muscle relaxer or you are tolerant of it...then switching to another one like Flexeril, Robaxin, Skelaxin or Baclofen might be a good choice. My PM has me rotating meds every 3 or so years to keep from having to continue to raise the dosages.

    And even though I know it's difficult...but it's really important to continue to exercise in a safe way. Whether that is a slow walk each day...or aqua therapy....or anything that can keep your muscle tone and keep you healthy in other ways. Same thing with eating a healthy diet. I switched to all organic 2 years ago and that made a big difference in my energy levels and inflammation.

    I would hope that you don't smoke...as that is something that is not healthy for obvious reasons...but it's also now proven to prevent fusion from happening after surgery as well as drying out other discs and causing more spine problems.

    And then the other type of treatments are using a TENS unit, acupuncture, massage, ice, heat, biofeedback, and steroids or injections of lidocaine.

    Another part of chronic pain is depression. This certainly happens to so many of us as I said...it's very difficult emotionally dealing with this and trying to make a new life for yourself in spite of it.

    So seeking out a Dr. to help with this that provides counseling and/or possibly an antidepressant. Having them help you find tools that you can use mentally to fight this pain.

    And I, nor anyone here, would judge you in any way. So many of us have gotten sucked into the black hole some time in our journey with CP.

    So, hopefully you can share a bit more and hopefully you can work with this Dr. or find a PM or better one that will figure out a much better plan for you that includes dozens of modalities to approach your pain so you aren't just trying to make the Vicodin/Soma do all the work...

    Keep us posted...
  • I am so sorry for the pain you are having. I can not take Morphine either and have used Nucynta for past 8 months and it has been a Godsend. I don't get the nausea that Vicoden and Percocet can give me and at the 50mg X two every 8 hrs. it usually keeps my pain at a 4-5 level. I hope you are able to find something to give you some relief. Please keep us informed

  • GeofishnomoreGGeofishnomore Posts: 4
    edited 09/15/2012 - 3:14 PM
    I have to stay on low dosages of pain killers and nerve blockers are not available to me. I am allergic to most medicines and has always been my problem. My hands and feet start open sores and peeling when I take nerve and high dose pain meds. I have exhausted all nerve altering drugs, everything from morphine to cymbalta to neurontin from the pain doc. He has never had someone so allergic to all these things and doesn't know what to do. He even sent me back to my GP as he is not able to help me.

    I was just hoping that there was some miracle drug that did not present me these horrid allergies. I have done the Spinal Cord Stimulator trial, and it also failed as all of my waist from front to back is completely numb. Tricky restroom issues...LOL....

    SCS seems not work on completely numb areas as I have found.

    I so have an appreciation for all of you and what you go through, at least I can walk some and perform some general things, but since the fusion, I have lost a lot of motor skills. I also fall asleep like just sitting here. It is amazing the change that took place following the fusion. They left me with a spinal leak for a week and then repaired, and I can really tell that that has much to do with this condition. They discovered a large hermangioma at t12 as well, and that explains the upper back and neck part. But the surgeons don't want to work on me any more as there is no way to guarantee if if will alleviate the pain. The pedicle screws are not tight on the rods for some reason and allows movement.

    God I am so glad you are all here, there are some days when I realize I don't have it as bad as some of you. God bless and I will keep you all in my prayers.

    I believe I have exhausted my options and this is what I have left to deal with. Unless someone has some miracle cure I have not heard of. Take care and thanks for the responses, I need them. You really realize who your friends are when you have these kinds of issues. You all take care.
  • Living at 4-5 pain on the edge of 10 with just 1 slip. The list of things I can't do or else makes you wonder " why face another day?"
    Can't walk
    Can't drive
    Can't cook
    Last surgery ( fusion) was a year ago
    I feel just as bad as I did before they removed the tumor 4 months before that. At least back then I had a house and family and friends help me out. Now I pay crack heads to take my garbage to the dumpster 500' away . I need to prioritize basic task daily. Crying and asking help from people that in another life I would never assiotate with.
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    edited 02/06/2015 - 11:01 AM
    For FBSS has the doctor diagnosed the pain as centralized? Many with FBSS end up w centralized pain which calls for totally different pain management protocol many times.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • itsautonomic said:
    For FBSS has the doctor diagnosed the pain as centralized? Many with FBSS end up w centralized pain which calls for totally different pain management protocol many times.
    That is what I'm finally starting to do.
    I just researched and found out I might also have?
    myoclonus? 4hrs sleep last 2 days? Twitching/ jumping the second I fall asleep? I video taped it for future documentation. Sent another note to Dr.
    The back muscles spasm to protect the spine from further injury In almost all instances in which myoclonus is caused by central nervous system disease it is preceded by other symptoms; for instance, in CJD it is generally a late-stage clinical feature that appears after the patient has already started to exhibit gross neurological deficits.
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