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  • Adult tethered cord

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    Old 06-28-2014, 09:45 AM   #1
    FedUpMom
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    Adult tethered cord

    I have had two surgeries for tethered cord. One in 2006 and another in July 2013. My cord has already re-tethered and the symptoms are rapidly becoming unmanageable. I want to go as long as I can possibly go before trying anything else. Has anyone had any experience with Spine-shortening vertebral osteotomy? It is a possibility that we have discussed since each de-tethering will provide a shorter period of relief at this point. Since my last only worked for 6 months that doesn't provide a lot of wiggle room. I am not sure where to go from here. I am increasingly depressed and since I will not take any type of narcotic meds, the pain is sometimes overwhelming. It is becoming increasingly difficult to deal each day with the increasing symptoms and issues associated with the cord. Any insight is greatly appreciated. I have found limited research/long term case studies on the osteotomy.
    Thanks!

     
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    Old 07-16-2014, 10:53 AM   #2
    littlebitlarisa
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    Re: Adult tethered cord

    Hello FedUpMom,

    I am not familiar with spine-shortening vertebral osteotomy but I to have the issues with tethered cord. I am 24 and about to have my 3rd surgery actually this Friday. I know how painful it can be. For me the nerve pain and numbness in my legs is the worst but I am also experiencing even more trouble with my bladder and bowel this time. I pray that you are able to find some relief.

    Larisa

     
    Old 07-18-2014, 11:42 AM   #3
    gmak
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    Re: Adult tethered cord

    Hi fedup mom, I am really sorry you are having so much pain, complications & neuropathy symptoms! I have a tethered cord @ L1 caused by very advanced adhesive arachnoiditis, empty sac, because cauda equina or lower spinal cord below L1 to S2 is slowly dying over last 26 years & nerve roots cannot be visualized in thecal sac anymore because they are scarred to my dura now as one unit. I cant tell which symptoms are caused by tethering & which from arach but i can relate so much to your frustration & pain. I do take long acting narcotics though & i was told by 3 spine NS's that i cant have surgery anymore, ive had 4 but just lumbar laminectomies not de tethering surgery. I have severe pain in lower back, numb calves, toes, top of feet, soles & the area is increasing in size & it feels like when i stand or walk on my feet i have big, deep electricity shocks & feels like im stepping on legos! It hurts & doesnt leave but lyrica does reduce it alot. Why is your spinal cord tethered & where? What symptoms do you have? I havent heard of spine reducing osteotomy, but it sounds like the surgery reduces the vertebral length to adapt to cord length, is that right? I had wedge compression fractures at T9-10, T11-12, T12-L1 & i feel & look shorter waisted! Was scar tissue the reason the last surgery only helped for 6 months? Is your dr a general neurosurgeon or spine neurosurgeon or a spine orthopedic surgeon? What is surgeon's recommendation concerning surgery again?I hope that something can help, have you been to pain mgmt dr? Sorry for all the questions.

    Last edited by gmak; 07-18-2014 at 11:44 AM.

     
    Old 09-14-2014, 02:36 PM   #4
    Randeejae
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    Re: Adult tethered cord

    Dear Fed Up Mom,
    I found this site today hoping someone might have updated info on vertebral shortening but I see you too have had little luck ... We will continue the search and let's be sure to inform each other if we find anything new. I have seen just a few case studies from 2008 or so.

     
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