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Thread: Chronic Cauda Equina Syndrome and normal EMG???

  1. #1

    Unhappy Chronic Cauda Equina Syndrome and normal EMG???

    Hi Dr. Young, My hubby had emergency back surgery in December because of acute CES. Seven months later he is left with extreme pressure in his rectum and at tailbone. (He describes it like some one trying to push/pull a large ball up/out of his rectum then spreading out to feel it even at his tailbone) Numbness in right buttock, upper thigh, rectum and penis. He is also impotent with only partial feeling of his penis. His surgeon released to work with restrictions (his work does not do restrictions so he is still out) and referred him to a Physiatrist (sp?). The phys. said he believes he should see a neurosurgeon that their is a possible large herniation (although surgeon says its scar tissue). The indep. medical examiner (workers comp doc) said he agreed with surgeon but suggested an emg as well. Physiatrist agree to do emg but thought it wouldn't show anything they didn't know but could be a snap shot of time. So, they did it today and the results show NO NERVE DAMAGE! What is up with that? My husband and I asked surgeon back in early winter about testing and he said their is no testing for CES so is this what he meant??? We are quite surprised that this showed nothing. Can anyone elaborate? He is going to see a neurosurgeon and we hope they have more knowledge in the area of CES. Can anyone suggest a neurosurgeon in Metro Detroit who knows about CES or anywhere??? Maybe U of M? Thank you so much for your time we are growing desperate. Beth
    Last edited by reallybusymama; 07-28-2009 at 02:32 PM. Reason: mispelled words and thank you didn't show :-)

  2. #2
    Quote Originally Posted by reallybusymama View Post
    Hi Dr. Young, My hubby had emergency back surgery in December because of acute CES. Seven months later he is left with extreme pressure in his rectum and at tailbone. (He describes it like some one trying to push/pull a large ball up/out of his rectum then spreading out to feel it even at his tailbone) Numbness in right buttock, upper thigh, rectum and penis. He is also impotent with only partial feeling of his penis. His surgeon released to work with restrictions (his work does not do restrictions so he is still out) and referred him to a Physiatrist (sp?). The phys. said he believes he should see a neurosurgeon that their is a possible large herniation (although surgeon says its scar tissue). The indep. medical examiner (workers comp doc) said he agreed with surgeon but suggested an emg as well. Physiatrist agree to do emg but thought it wouldn't show anything they didn't know but could be a snap shot of time. So, they did it today and the results show NO NERVE DAMAGE! What is up with that? My husband and I asked surgeon back in early winter about testing and he said their is no testing for CES so is this what he meant??? We are quite surprised that this showed nothing. Can anyone elaborate? He is going to see a neurosurgeon and we hope they have more knowledge in the area of CES. Can anyone suggest a neurosurgeon in Metro Detroit who knows about CES or anywhere??? Maybe U of M? Thank you so much for your time we are growing desperate. Beth
    Beth,

    Something doesn't sound right. Somebody experienced with neurological examination of cauda equina should examine your husband and figure out what is going on. If he did have the diagnosis of cauda equina syndrome and indeed had surgery to correct it, it means that something was compressing on his cauda equina, which is located below L1 to S5 spinal vertebra. The question is whether or not something is still compressing on his cauda equina. If there is not, this suggests that the symptoms that he is currently experiencing is a residual of the original injury.

    Cauda equina may cause the symptoms that your husband describes, i.e. pain in the rectum that feels as if there is great pressure. However, it is important to rule out that there is something that is indeed causing pressure. This can be directly ruled out with an x-ray test called a barium enema. This would show any abnormality of the colon and rule out a cause of pressure in the rectum or colon. If so, whatever the cause is should be corrected.

    If no cause of colon problem is present, I suspect that your husband has what is called neuropathic pain. This is pain that is generated by the nervous system itself and results from loss of incoming sensory input to the spinal cord. In the absence of sensory input, the nervous system become hypersensitive. In a way, neuropathic pain is a form of "spasticity" for the sensory system.

    Neuropathic pain comes in several forms. One is a constant burning, aching, freezing, cold, pressure, or even vibratory sensations that are very uncomfortable. A second is in the form of transient pain or "electrical shocks" that appear to go to different parts of the body, particularly those that have less or no sensation. A third is hypersensitivity to touch, called allodynia.

    Supposing that his symptoms is a result of neuropathic pain and a problem with the colon itself, it is reasonable to try some medication that has been shown to help neuropathic pain. Basically, five categories of drugs may help, listed in sequence of which should be tried first.
    1. Antispasticity drugs may help reduce neuropathic pain in some people. Baclofen (Lioresal) is the most commonly used antispasticity drug. Another one is tizanidine (Zanaflex).
    2. Amitriptyline (Elavil) in low doses (20-40 mg/day) may alleviate certain types of constant neuropathic pain such as the burning and pressure pain. It doesn't eliminate the pain but reduces it.
    3. Anti-epileptic drugs seem to help neuropathic pain. Two in particular are approved for neuropathic pain: gabapentin (Neurontin) and pregabalin (Lyrica). High doses may be required.
    4. Glutamate receptor blockers have been reported to help some people. These include low-dose ketamine and dextromethorphan have been reported to help some people.
    5. Opioid drugs. There is a much fear of opioid drugs because they are addictive but, in my opinion, the pain is often worse than addiction. Some people use a powerful opioid called fentanyl, delivered by patch.

    Note that medication (particularly option 5) does not always help and should not be the only approach. Neuropathic pain sometimes goes away as function recovers. Pain or irritation in other parts of the body may worsen neuropathic pain and eliminating such causes often help. Exercise may help. Some people claim that spinal cord stimulation helps. Acupuncture may help.

    Wise.

  3. #3

    Smile Thanks Wise

    Thank you again Dr. Young, We are going to take your suggestions to the neurosurgeon and case manager for consideration. His ortho-surgeon said he had CES and needed emergency surgery in December. L1 to S5 is the disc he had worked on and they said it was massive. He has had very little change in the numbness since but has no pain, only the pressure. He does say that he gets sharp pains that shoot in his saddle area and rectum w/o warning very random. When he walks for to long or sits for to long the pressure builds and numbness extends out. He has a delay in urination (hesitancy) and problem totally voiding his bowel movements. The post surgical MRI showed what the radiologist described as large herniation but the ortho-surgeon said it was scar tissue. I agree something isn't right and we hope to find a doc able to discern what is happening. My hubby is only 38 years old and would like to press on with his life. :-)

    Again, thank you for your time....What you do here for the public is amazing.

    Beth

  4. #4
    Hi Dr. Young, I thought I would share what the doctor at U of M said about my husband lingering CES symptoms. Basically, that 90% of people are where they are going to be permanently about 1 year out of surgery. That my husband is no more at risk of re-injury than anyone else after discectomy, he also said that that there is no surgery or pill that will help him get sensation back in his saddle area. He couldn't give much feedback in regards to the extreme pressure on at his rectum and tailbone. But assumes that it is part of the nerve damage. He said that the day the emergency surgery was done was the fire and now he's left with the smoke damage. THIS STINKS. I know it could be a lot worse but somehow it's difficult to accept. Again, thanks for you input prior.

    Beth
    Last edited by reallybusymama; 10-02-2009 at 01:14 AM. Reason: Posted without saying thanks. :-)

  5. #5

    C.e.s.

    I have perm C.E.S. I also have the pressure-loss of feeling, tingling in left leg & foot-somedays I am unable to walk other days it is just the "normal" pain-somedays the pain is almost unbearable-I have found very little info on C.E.S. this syndrome is extremely life changing! It will also take a toll on your husband mentally. trying to figure out your limitations & accepting them is a huge huge task especially if you are use to being active! If you find an informative site I would love to know about it as I have had very little luck & I am frustrated-2yrs & 1mth out from surgery & I seem to be regressing & I can not seem to find knowledgable help! Good luck & hang in there!

  6. #6
    Quote Originally Posted by LeeAnne View Post
    I have perm C.E.S. I also have the pressure-loss of feeling, tingling in left leg & foot-somedays I am unable to walk other days it is just the "normal" pain-somedays the pain is almost unbearable-I have found very little info on C.E.S. this syndrome is extremely life changing! It will also take a toll on your husband mentally. trying to figure out your limitations & accepting them is a huge huge task especially if you are use to being active! If you find an informative site I would love to know about it as I have had very little luck & I am frustrated-2yrs & 1mth out from surgery & I seem to be regressing & I can not seem to find knowledgable help! Good luck & hang in there!
    LeeAnne and reallybusymama,

    I know that it is extremely frustrating to find out that there is currently no treatment for cauda equina and conus injuries. I want to assure you that I think about these problems constantly and encourage doctors that I meet to try new and different treatments of these conditions. I understand and want to ensure that that the best people in the field are working on this problem. I think that regeneration of the cauda equina is easier than regeneration of the spinal cord and that we just need to get good scientists working on the problem.

    I was recently at a gathering of the pre-eminent scientists in the United States. It was very discouraging because i heard a professor from one of the most respected universities in the United States say to me that the current budgetary crunch in science is our fault, that we have trained too many graduate students and postodoctoral fellows. He pointed out that that we should be training no more than one or two graduate students and postdoctoral fellows during our careers because there are too many people competing for our positions.

    I was repelled by this suggestion because I know that there are so many problems that we have not solved, that there are not enough good scientists working on the problem of spinal cord and cauda equina regeneration. If prominent scientists now give up the fight to make sure that NIH continue to fund research to find cures, we might as well kiss the cure goodbye. Over the last several weeks, I have been sufficienty perturbed by this to try to make a big public statement about this.

    In my opinion, cauda equina regeneration is well within the capabilities of our science and scientists. This is a solvable problem and one that can be solved if only we invest in the research. It is beocming clear the the government cannot and will not do so. Therefore, we must find some other solution.

    Wise.

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