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Thread: Been diagnosed with cord tethering

  1. #1

    Been diagnosed with cord tethering

    Hi,

    I have spina bifida and am confined to a wheelchair. In the past few months I have had trouble sleeping on my back due to pain in my lower back region. I also suffer pain when I slouch sitting after a while. An MRI revealed tethering of the cord to some degree. Unfortunately, my results had no pictures due to a silly mix up but there was a text description.

    I saw a surgeon who looked at the results and he said I had a degree of cord tethering. He admitted that he was biased toward surgery, since his profession is being a surgeon, and that he'd recommend an untethering procedure.

    What concerned me is that he said that cord tethering is not normally associated with spina bifida and that there would be no serious problems in the future if it was left untreated, but everywhere on the internet states otherwise!

    I am 29, 30 in June. I sleep on my front, anyway, but can wake up sleeping on my back which can be quite painful. At the moment, though, it does not seem to be disrupting my lifestyle.

    The internet does say that cord tethering causes incontinence and I do suffer from this, but always thought this was due to the spina bifida.

    Is an untethering surgery procedure generally recommended? I have hydrocephalus with a shunt in place, under the skin but have heard that an untethering procedure potentially causes shunt malfunction within the first 6 months.

    What are people's opinions?

    Right now, I have been asked to see a pain specialist, have another MRI done because of the missing picture results and generally keep an eye on it. I don't believe I even need to see a pain specialist because I don't experience lower back pain every day. It depends what situation I put myself in, but I guess it's worth going?

    Thanks!

  2. #2
    What is the likelihood that I will need the untethering procedure at some point in my life?

    Is clinical deterioration less likely when diagnosed with it as an adult?

  3. #3
    Many people with SCI acquired later in life have had problems with cord tethering, and it is never easy to determine when surgical intervention is really needed. Two major centers have a reputation for their expertise in this area: Craig Hospital in Denver, and the University of Miami in Florida.

    I am going to ask Dr. Young to look at your post.

    (KLD)

  4. #4
    Thank you, that will be a great help!

    Here is a little more info about myself. I get a burning sensation in my right foot a lot and get this strange prickly sensation in that same foot when I lay down on my back. It causes my foot to jerk, but it eventually goes away. I catheterize intermittently every day and am able to retain fluid without leaking most of the time. There are times when I will leak inbetween and this is dependent on the volume of fluid I drink and how well I catheterize. I rarely get strong urges to urinate, resulting in my leaking. Bowel function is fine. I suffer from neck pain almost every day, and I have been told this could be due to my Chiari.

    Thank you for reading!

  5. #5
    Quote Originally Posted by speedy2056 View Post
    Hi,

    I have spina bifida and am confined to a wheelchair. In the past few months I have had trouble sleeping on my back due to pain in my lower back region. I also suffer pain when I slouch sitting after a while. An MRI revealed tethering of the cord to some degree. Unfortunately, my results had no pictures due to a silly mix up but there was a text description.

    I saw a surgeon who looked at the results and he said I had a degree of cord tethering. He admitted that he was biased toward surgery, since his profession is being a surgeon, and that he'd recommend an untethering procedure.

    What concerned me is that he said that cord tethering is not normally associated with spina bifida and that there would be no serious problems in the future if it was left untreated, but everywhere on the internet states otherwise!

    I am 29, 30 in June. I sleep on my front, anyway, but can wake up sleeping on my back which can be quite painful. At the moment, though, it does not seem to be disrupting my lifestyle.

    The internet does say that cord tethering causes incontinence and I do suffer from this, but always thought this was due to the spina bifida.

    Is an untethering surgery procedure generally recommended? I have hydrocephalus with a shunt in place, under the skin but have heard that an untethering procedure potentially causes shunt malfunction within the first 6 months.

    What are people's opinions?

    Right now, I have been asked to see a pain specialist, have another MRI done because of the missing picture results and generally keep an eye on it. I don't believe I even need to see a pain specialist because I don't experience lower back pain every day. It depends what situation I put myself in, but I guess it's worth going?

    Thanks!
    Speedy,

    I suspect that your back pain is not related to your tethering for the following reasons. First, you probably have been tethered a long time but your pain started only several months ago. Second, your pain seems to be positional, i.e. you have more pain when sleeping on your back. This suggests strongly that the pain is from an bone or disc problem. Third, while you do not describe the pain, the fact that you don't indicate that it is burning or pressure-like suggests that this is not neuropathic pain. Pain due to deafferentation related to tethering should be neuropathic in quality. So, if I were your surgeon, I would be looking for some operable cause of your back pain, such as degenerated joints or herniated disc.

    You are correct to be concerned with your shunt. Any operation involving exposure of your spinal cord will result in significant cerebrospinal fluid loss and changes in your ventricular pressure. This may upset the balance of cerebrospinal fluid flow through the shunt or down the spinal cord. In any case, it is hard to predict and you may have problems after the surgery. I am not convinced from your description that the tethering is the cause of your pain. So, unless there is a more compelling reason for the untethering surgery, I would suggest holding off.

    On the other hand, something has happened in the past few months to cause your back pain. Because the pain seems to be worse after you have been lying down on your back, the CT/MRI should show if there is any surgically correctable cause. You probably should get a second opinion. If there are no obvious deformities that may cause the back pain, the pain may subside with conservative physical therapy and pain management.

    Wise.

  6. #6
    Thank you for your response, Dr. Young!

    The pain when lying down takes time to build up. Eventually it will lead to like a really bad aching sensation that ocassionally radiates down to my left leg, underneath. When slouching the pain is like a severe ache, that, again, takes time to build up and I find it difficult to "get up" and correct myself. My surgeon said that the pain radiating to my leg is a clear indication of spinal cord tethering. At that point, he talked about the surgery.

    I had a little "brain wave" the other day. I remembered feeling some momentary pain in my left hip as a child. I have had surgery in my left hip when I was little, so I always put that down to some kind of after effect. It has always come and gone ever since. That, too, feels like an ache and nothing sharp.

    However, I do experience a burning sensation in my right foot throughout the day. Could that be related to the tethering? It is hard to specifically tell what part of the foot the pain is located but I believe it is behind the heel or underneath, on the sole. I know it is not localized at the top of the foot. The burning is made better when the foot is not outwards in a typical sitting position, however, it may still be present. The burning throughout the day is normally followed up by a sensation of electricity going through my foot, causing it to jerk when I lay in bed at night. This eventually settles down. I went to my local doctor's about this electrical sensation some months back and he said that it is probably due to a trapped nerve and that there's not much that can be done.

    I'm not sure if this is of any importance, but I catheterize intermittently throughout the day and have done so since I were little. The docs said my bladder function has been impaired due to the spina bifida. I can leak inbetween caths but it really depends on the amount of fluids I consume so I have to take extra care of that. My bowel movements are fine. I have Chiari Malformation, although I don't recall which type. I believe it is type II.

    I have read horror stories online of the spinal cord splitting or even snapping. Somebody told me this is more likely in children who's spines are still growing. Is this true?

    Thank you for your time!
    Last edited by speedy2056; 04-06-2011 at 11:04 AM.

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