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  • I am new to the site. My 23 year old daughter was diagnosed with a tethered spinal cord a year ago. She was diagnosed with scoliosis in middle school but was not diagnosed with tethered spine syndrome until a year ago. She has not seen a neurosurgeon at this time. She is in her last semester of grad school and is under a lot of stress. She is also in a lot of pain from her back issues. She recently said that she is feeling some tingling on her upper left shoulder and mid back. I would appreciate some feedback regarding ways to address the pain, articles or literature to read to educate us both. Her orthopedic surgeon that she was seeing for the scoliosis referred her to pediatric neurosurgeon who specializes in tethered spinal cord syndrome for children. She and I both are concerned that she needs to see an adult neurosurgeon. Any input or feedback on this condition would be helpful. I have not been able to find very much data or research related to adult tethered spine syndrome. Thank you.
  • LizLiz Posts: 7,832
    Please take the time to read this post and refer to it when you have questions

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    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • thoracic spine painthoracic spine pain Posts: 566
    edited 02/10/2014 - 2:16 AM
    I have just googled the web for information on this condition. There are pages and pages of information and I also found information from another health site where parents discussed symptoms. I have also typed tethered spinal cord syndrome into the search box on the top of the page in this forum and have found quite a lot of posts about it.

    That is the easiest way to see if is discussed here. Type tethered spinal cord syndrome in to the search field and everything on the site will come up. If you find a post you can Personally message (PM) the person who has experience and find how they coped and the outcome.

    I have an extremely uncommon injury and found I had to do most of the research myself.
  • Hi, I am a 57 yr old female w Spina Bifida who was only diagnosed w tethered cord syndrome last yr after a lumbar MRI..I experience severe lower back pain radiating down legs and numbness.....Had 2 surgical consults..One surgeon told me that if I didn't have the surgery I wld end up in a wheelchair within 5 yrs.....The other surgeon was impressed w how well I am able to get around w all of my problems and said to just keep going and I will know when I need to have something done...I am taking Neurontin 300mg/3x a day and also see a chiropractor once a week for pallative therapy...Am wondering if at my age I shld even consider having the surgery since there are many complications that could arise from the surgery...I do feel like the weakness and pain has increased over the past few months..Any comments or suggestions wld be apprrciated...Thanks...
  • If the symptoms are increasing then it is time to revisit the surgeon for followup and re-evaluation.
    I have tethering of the spinal cord on many of my MRI reports as well.
    Perhaps a return to the neurosurgeon you saw, along with consults with at least two others would help you decide what to do regarding surgery.

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