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Thread: Pain from Spina Bifida, Tethered Spinal Cord, Damaged Nerves

  1. #1

    Pain from Spina Bifida, Tethered Spinal Cord, Damaged Nerves

    I was born in 1932 with hole in mid-back; doctor did not know what it was so he sewed the hole up. Had no significant problems over the years except don't touch my back. At age 68 I began having terrible pain in my lower back and legs; could not stand on my feet but a short time. Finally, my primary physician sent me to an orthopedic doctor who did an X-Ray and diagnosed me with Spina Bifida and a tethered spinal cord; sent me to a Neurologist. The Neurologist concurred with his diagnosis and sent me to a Neuro-Surgeon who released my spinal cord by surgery in 2004 at age 70. I seemed to be alright for a short while then my lower back and legs began hurting again. I have been on all type of medications, pain patches, physical therapy, injections; nothing helps. I had a nerve test on my legs and diagnozed with nerve damage. Since then I have pain in my lower back, legs and as of late in my groin area. Is there anyone who has experienced this type of pain and, if so, have you been able to get help. I can't stand it too much longer!!!

  2. #2
    Can you give us a run-down on what types of specific meds you have tried?

  3. #3
    Senior Member
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    OP you're probably tethered again. You will do well to stay on these boards but I have another board related to our specific condition that I will send you private message for. You need to go see your neurosurgeon before you lose function again.
    Liza R. McCollum

  4. #4

    Pain from Spina Bifida, Tethered Spinal Cord and Damaged Nerves

    Quote Originally Posted by David Berg View Post
    Can you give us a run-down on what types of specific meds you have tried?
    David, I have taken Ultram, Elavil, Lyrica, Neurotin, Somma as well as used Lidicaine pain patches. The Elavil and Somma did not help at all, the Lyrica made me looney-tune, and the Neurotin number my entire left side from top of my head to end of my toes. The pain patches do not help either. I have had Caudel and Epidural injections (in sets of three) several times; one may help for short time, others do nothing. I have had physical therapy and water arobics .. no help. Do you know of anything that will help?

  5. #5

    I can do all things through Christ who gives me strength

    Quote Originally Posted by ACC15519667 View Post
    I was born in 1932 with hole in mid-back; doctor did not know what it was so he sewed the hole up. Had no significant problems over the years except don't touch my back. At age 68 I began having terrible pain in my lower back and legs; could not stand on my feet but a short time. Finally, my primary physician sent me to an orthopedic doctor who did an X-Ray and diagnosed me with Spina Bifida and a tethered spinal cord; sent me to a Neurologist. The Neurologist concurred with his diagnosis and sent me to a Neuro-Surgeon who released my spinal cord by surgery in 2004 at age 70. I seemed to be alright for a short while then my lower back and legs began hurting again. I have been on all type of medications, pain patches, physical therapy, injections; nothing helps. I had a nerve test on my legs and diagnozed with nerve damage. Since then I have pain in my lower back, legs and as of late in my groin area. Is there anyone who has experienced this type of pain and, if so, have you been able to get help. I can't stand it too much longer!!!
    Hello, My name is Michelle & I was born with Spinal bifida & I have the same pain & it is HORRIBLE. I haven't found any relief either. The only thing that helps me is giving it to God, asking for His help, through prayer and saying Bible verses. I am unable to have any surgeries. I wanted you to know that I am sorry for your pain, and you are in my prayers, and I understand. Much love to you. I hope this helps.

  6. #6
    Quote Originally Posted by mcco5543 View Post
    OP you're probably tethered again. You will do well to stay on these boards but I have another board related to our specific condition that I will send you private message for. You need to go see your neurosurgeon before you lose function again.
    Hello I have a tethered cord also would you mind sending me the other board so I can visit there. Thank you

  7. #7
    Senior Member Foolish Old's Avatar
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    ACC15519667, sorry for your troubles. Your story is similar to mine. The difference is that I have been aware of and had symtoms of my neural tube defect as long as I can remember. However, I led a fairly "normal" life in regard to physical activity until things just went kaflooey. Gradual decline and then a sudden onset of paralysis. My tethered cord went undiagnoised way too long, and the untethering didn't reverse the paralysis.

    I understand the pain you describe. No fun. I used to pack my back in ice and eat copious amounts of analgesics. The detethering reduced the back pain, but left me with nerve pain from my left hip to my toes. No fun, but I have learned to ignore it. I take nothing, and that works for me. Not suggesting that as a course of action for anyone else.

    I rarely talk about my physical condition. Denial is a coping technique that has served me well. But I want you to know that you're not alone in what you are going through. I wish I could tell you that I know a good answer that will help you. I don't. I do know that intense pain is debilitating. It produces fear, confusion and doubt. Do what you can to reduce that pain enough to take control of your situation. You are a very strong person. Don't forget that.

    I wish you peace and relief. It will get better. Hang on.
    Foolish

    "We have met the enemy and he is us."-POGO.

    "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

    "Dream big, you might never wake up!"- Snoop Dogg

  8. #8
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    Quote Originally Posted by ACC15519667 View Post
    David, I have taken Ultram, Elavil, Lyrica, Neurotin, Somma as well as used Lidicaine pain patches. The Elavil and Somma did not help at all, the Lyrica made me looney-tune, and the Neurotin number my entire left side from top of my head to end of my toes. The pain patches do not help either. I have had Caudel and Epidural injections (in sets of three) several times; one may help for short time, others do nothing. I have had physical therapy and water arobics .. no help. Do you know of anything that will help?
    Have you tried the Oxycodone family of just pain killers? They will make you a little dopey at first but that wears off pretty quickly (a week or so) and they helped me keep the pain at a livable level.

  9. #9
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    I have the same. Had my detethering April, 2011 at age 53. Doing pretty good now. My pain initially was better, then got much worse, now better. Ironically, I started on Vitamin B-12 injections for a diet plan I'm on, and my pain got much better! When I stopped the injections, the pain came back. Started them back up, in a couple of weeks, the pain was greatly diminished. There is a lot of supporting data that the B family of vitamins can help with neurological pain. I had, in fact, taken specially prescribed oral ones with no relief. Once I am off of the diet, my MD will prescribe Vit B-12 injections for me or else!!! Maybe you an give this a try. It's one injection every 2 weeks and it's worth it!
    WmnGonCrzy
    Scars are tattoos with better stories

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