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  • Adult onset tethered cord questions

    I am a 39 y.o. Woman recently diagnosed with TCS at L2, in addition to herniation at L4,L5, S1. The pain has been severe for six years, although it was thankfully intermittent until the past seven months when it has been daily. I have severe pain in my lower back, buttocks, and left hip, as well as some bladder issues.

    I had seen 5 different orthos who diagnosed the disk herniation only; I saw a neurosurgeon at the university of Utah who was the first to also diagnose the TCS. I'm scheduled for surgery, have read every study i can find as well as this great forum, but i still have a few questions:

    1) Is the severity of TCS indicated by the level of the tethering? That is, is my situation with tethering at L2 less severe than, say, S1, and is surgery therefore less critical?

    2) As a professor, I spend most of my time at my computer. How soon can I realistically expect to be back at my computer working after surgery (recognizing that everyone heals differently)?

    3) In addition to checking my surgeon's experience with this surgery, what else do I need to find out to assure myself of his skill? I understand that the univ of Utah's spine center is highly regarded.

    Many thanks for your advice. I am so grateful to Dr Young for his generosity and responsiveness to so many in this forum and in the field more broadly.

    Meb

  • #2
    Meb, I don't have any knowledge about TCS but I welcome you to the forum and wish you all the best in your surgery and recovery. There are many people here with experience of TCS and sufficient expertise to answer your questions, and I know they'll be along shortly. Blessings to you.
    MS with cervical and thoracic cord lesions

    Comment


    • #3
      I will ask Dr. Young to comment.

      Am I correct that you do not have a previous SCI but only the recently diagnosed tethered cord syndrome?

      (KLD)
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

      Comment


      • #4
        That's right, no SCI. I've looked all over the place and have found little info for tcs not associated with spina bifida or post-surgery scarring. I know this is a forum for SCI, but it seems like the best online resource I've found. Many thanks.

        Comment


        • #5
          Originally posted by Meb16 View Post
          I am a 39 y.o. Woman recently diagnosed with TCS at L2, in addition to herniation at L4,L5, S1. The pain has been severe for six years, although it was thankfully intermittent until the past seven months when it has been daily. I have severe pain in my lower back, buttocks, and left hip, as well as some bladder issues.

          I had seen 5 different orthos who diagnosed the disk herniation only; I saw a neurosurgeon at the university of Utah who was the first to also diagnose the TCS. I'm scheduled for surgery, have read every study i can find as well as this great forum, but i still have a few questions:

          1) Is the severity of TCS indicated by the level of the tethering? That is, is my situation with tethering at L2 less severe than, say, S1, and is surgery therefore less critical?

          2) As a professor, I spend most of my time at my computer. How soon can I realistically expect to be back at my computer working after surgery (recognizing that everyone heals differently)?

          3) In addition to checking my surgeon's experience with this surgery, what else do I need to find out to assure myself of his skill? I understand that the univ of Utah's spine center is highly regarded.

          Many thanks for your advice. I am so grateful to Dr Young for his generosity and responsiveness to so many in this forum and in the field more broadly.

          Meb
          Meb,

          Tethering is a neurosurgical condition in the sense that it is not readily seen on MRI or CT scan but is generally visible to surgeons who expose the spinal cord. Since neurosurgeons are mainly the ones who cut open the dura, it is something that neurosurgeons see. Orthopedic surgeons do not often see tethering of the cord because they usually do not open the dura.

          The most common cause of tethered spinal cords is spina bifida, where the spinal canal fails to develop normally and the spinal cord becomes attached in some way to the spinal canal or associated membranes. These include meningomyelocoeles. A second common cause of tethering is injury which causes adhesions between the spinal cord and the arachnoid. A third cause is inflammation or meningitis and arachnoiditis. A fourth cause is presence of a tumor, including benign ones, such as lipoma.

          Many neurosurgeons have reported that untethering not only reduces pain but may restore function. You should look for a neurosurgeon who has had experience exposing the spinal cord, somebody who will spend the time to explain to you what he or she has done, and who will be willing to follow you even if you may not need surgery. Finally, it seems that your herniated discs should be fixed at the same time if they are compressing on your spinal cord.

          Wise.

          Comment


          • #6
            If you are experiencing loss of function, don't delay finding a HIGHLY competent neurosurgeon who is experienced in treating TCS. Sooner the better. Good luck!

            ETA - you asked about recovery time. I think there are too many variables to receive a meaningful answer over the internet. I can tell you that untethering is a major operation.
            Last edited by Foolish Old; 11-09-2010, 07:45 AM.
            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

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            • #7
              Thank you so much for your responses. While the tethering itself can't be seen readily on MRI, am I correct that a low-positioned conus medullaris (at L2) would be seen on MRI? How does a low-placed conus differ from a tethered cord (if at all) and how would a surgical procedure be different in these cases? My neurosurgeon described my condition as tethered cord, but also pointed out that the conus was located at the bottom edge of L2.

              Many thanks.

              Comment


              • #8
                I have temporarily closed this thread because it is attracting spammers of other types of "adult" topics and sites. Will leave it locked for now, and open it later if indicated. Sorry for the immature behavior of these spammers!!!

                (KLD)
                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                Comment

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