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Thread: Long story, unsure what to do

  1. #1

    Long story, unsure what to do

    This is a long story so I appreciate your patience.

    I had a scoliosis fusion in the early 70's with harrington rods from C7 all the way to the sacrum. The surgical site never fully healed and formed a sometime draining cyst. Eventually the upper rod was removed, the area debridded and the site healed. 15 years later the scar opened and started draining again only this time it was at the top of the leftover rod. Eventually this rod was also removed.
    Fast Forward 7 years. My fusion eventually caused a problem called flatback and I was having alot of back and hip pain and also numbness in one of my legs. I went to see if there was anything that could be done about that and the found a cyst inside my spinal canal that was compressing my spine. So I had a shunt put in that didn't make a bit a difference and the numbness was moving up my leg. I went back to have an extension put on the shunt but they instead put in another shunt with an extension that drained into my abdomen.

    This shunt didn't make the cyst change either until one day I suddenly had a severe case of vomitting, and my head was killing me. Eventually we went to the emergency room and my shunt had overdrained. I now have programmable valve connnected to the shunt so that it doesn't overdrain my head. The cyst is still there. and the left foot is total numb as far as touch, but has shooting pains that just about drive me insane. the left leg has large areas that are numb and I walk like I have a wooden leg or something. My tailbone has started like I am sitting on a tennis ball and the right leg and foot has some numbness.

    I walk bent over like I am 93 and wear 50mg fentanyl pain patches and take vicodin sometimes during the day. It still hurts. I read about flatback revision surgery and wonder if it would help. But I am unsure if it is even feasible.

    I don't know I am just so frustrated. I am on disability. I went to a pain management place but it landed up being a place where they mandatory make you stay in a lockdown for like 2 weeks and start suboxone. It seems to be the only way they go about their program.

    Anyway. I don't even remember my question. Thanks for listening. It's bedtime now.

  2. #2
    I'm sorry to hear how much trouble you have had.

    Shunts can be so problematic.....

    It sounds like pain is the biggest problem.

    How come you are not on any neuropathic pain medicines? The shooting pains you describe sound like nerve pain. While morphine/fentanyl can be helpful, the nerve medicines often help the best - and combinations of the nerve medicines with morphine/fentanyl can be really useful.

    You should talk to your pain doctors about trying things like neurontin, amitriptyline or nortriptyline, cymbalta or effexor, topomax etc.. There are many choices. Your doctor should start one at a low dose, and increase it until you get relief or until the side effects are not tolerable. If one doesn't work, you try a different one.

    Also, do you have a good rehab doctor (physiatrist?) that can perhaps help? You describe stiffness in your leg and I wonder if it is spasticity that can be helped by other medicines/treatment. Also, perhaps some physical therapy/rehab could help.

    As you have learned, back surgeries can often lead to more problems. I am hopeful that you have a very good neurosurgeon following you closely because of your shunt. You could try to maximize all of your non-surgical options (neuropathic med treatment, physiatry appointment etc...), since the more surgeries you have, the more challenging the next one becomes....

    You could also try to get another surgical opinion from the best possible neurosurgeon you can find.

  3. #3

    forgot to mention

    I forgot to mention I take gabapentin 3xdaily at 600 mg. Wow that first summer it had my whole world spinning everytime I turned my head. It does seem to quiet alittle some of the small pins and needles. But it does nothing about the little gremlins that have the big long needle that jab them in about 6 or so inches and then wiggle them around just to make sure they hurt enough. No, I don't really see the gremlins, but sometimes I can't believe there isn't an actual needle jabbed in me, it feels that real. Imagine saying that to my doctor and somehow it would be interpreted that I am hallucinating. aha ha ha

    I used to take a couple anti-depressants but I never noticed them doing anything but adding to the already sleepy feelings from the other drugs so I stopped them.

    I never knew what a psychiatrist did until last night. I thought they were like counselors for the mind or something. I willl have to check around and see who I can find. If anyone is from the Indianapolis area (west suburban) and have recommendations, Let me know. I was released from physical therapy because they said my leg muscles are plenty strong from trying to walk halfway straight without my legs bent.

    Anyway, thanks for listening, I am normally a lurker anytime I am on a website, I feel silly talking about myself when I know there are people here with much more serious problems than mine.

  4. #4
    Have you tried increasing the Gabapentin higher? You are only on a medium dose. My Dad takes 900mg 3 times a day, and many people here take 1200mg 3 times a day or even higher. If you can't go any higher because of side effects, have you thought about adding a second medicine like nortriptyline? Give any increase in dose at least a week or two to see if the side effects stabilize before giving up on it.

    Several of the nerve pain medicines I mentioned do happen to be anti-depressants, BUT that is not their only function. Perhaps you misunderstood.... These medicines were originally developed for mood/depression, and then they discovered that people with nerve pain had improvement in their pain. Many many many medicines that affect the brain have multiple effects.

    So perhaps you still need to try additional neuropathic pain medicines. I agree that it can be a struggle... balancing side effects with pain relief.

    It can be better. I promise you.

  5. #5


    IThanks for the hopeful message. I will give a psychiatrist a try and see if they have any ideas.

  6. #6
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Windsor ON Canada
    psychiatrist - medical doctor to diagnose and treat mental conditions

    physiatrist - doctor who deals with the physical body as a whole
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  7. #7

    ok got it

    Psychiatrist. No no no
    My autocorrect wont let me type the right word but I understand the difference now

  8. #8
    Actually a physiatrist is a medical doctor who is board certified in physical medicine and rehabilitation. They specialize in the management and treatment of persons with disabilities, and some in subspecialties such as sports medicine, pain management, or specific disabilities, such as spinal cord injury.


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