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Thread: Just diagnosed with tethered cord and distematomyelia

  1. #1
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    Question Just diagnosed with tethered cord and distematomyelia

    I just recently started having lower back pain. After an MRI, I went to a neurosurgeon today and found out I have a tethered cord and distematomyelia and syringomyelia. He showed me the MRI results and I am not questioning whether or not he is right but whether an invasive surgery is the only option. I found myself with a zillion questions after I left his office. Of course, he seemed knowlegeable about the subject and diagnosis, he kept saying "yours is just a fascinating case". He said it five times!! It doesn't seem so fascinating to me. The one thing that really got me though is that I am having intense pain in my right leg. he couldn't answer why. He said my other relating symptoms (that I never realized were associated) like bladder and bowel stuff would be corrected. That was great news, but still he wasn't sure about the leg pain. Consequently, the pain that started in my lower back has now radiating to my bottom down my thigh to my knee. Anyone with any experience, opinions, etc, would love to see what others think.

  2. #2
    Super Moderator Sue Pendleton's Avatar
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    An MRI for spinal stuff would not show sciatica, that I know of. And mine started after my paralysis pretty much the same but it started in my butt then went down my left leg. My doc at Walter Reed used accupuncture on it and after a few sessions no more sciatica. But with a new diagnosis being looked for I'd ask if your doctor could pin point the right leg pain. You might need an EMG or other test for that area. With any kind of spine surgery I would get a second opinion if there is time. But that's me and I'm not a medical professional.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  3. #3
    I think it's always a good idea to get a second opinion when surgery is being considered (or even when it isn't, if a serious problem has been diagnosed). Sometimes pain can't be traced to its source, but it doesn't sound as if the neurosurgeon considers that to be the overriding issue. It might be helpful to know why the neurosurgeon considers your case so fascinating that he mentioned it five times during a single appointment - maybe there's a level of complexity there that warrants a second pair of eyes. Best wishes with this, and welcome to CareCure.

  4. #4
    Quote Originally Posted by AngieBox View Post
    I just recently started having lower back pain. After an MRI, I went to a neurosurgeon today and found out I have a tethered cord and distematomyelia and syringomyelia. He showed me the MRI results and I am not questioning whether or not he is right but whether an invasive surgery is the only option. I found myself with a zillion questions after I left his office. Of course, he seemed knowlegeable about the subject and diagnosis, he kept saying "yours is just a fascinating case". He said it five times!! It doesn't seem so fascinating to me. The one thing that really got me though is that I am having intense pain in my right leg. he couldn't answer why. He said my other relating symptoms (that I never realized were associated) like bladder and bowel stuff would be corrected. That was great news, but still he wasn't sure about the leg pain. Consequently, the pain that started in my lower back has now radiating to my bottom down my thigh to my knee. Anyone with any experience, opinions, etc, would love to see what others think.
    Angie,

    Did your doctor say "diastomyelia" or "diastomatomyelia". Both of these mean that you have a congenital split spinal cord. It is rare and probably the reason why he kept saying that it is a "fascinating case". I agree with him that if you recently developed bowel and bladder issues and leg pain, that it may be the cause of both. The surgery may help the bowel and bladder problems but not necessarily the pain. It would be useful to get a second opinion. You have two options. One is just wait and see if the problems get worse. The second one is the undergo the surgery. I do suggest that if you and your doctor decide that you are progressing and it needs to be fixed, you should find a surgeon with experience in these rare cases.

    Wise.

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