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Thread: Spouse is C5/C6 Complete 2.5 Months Strange Pain Penis

  1. #1
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    Spouse is C5/C6 Complete 2.5 Months Strange Pain Penis

    My spouse Paul is a C5/C6 Complete SCI injury going on 2.5 months now. He is starting to feel a burning sensation at the tip of his penis? He is very scared that he will gain feeling down there but have no control. I have read up on a lot of different cases and feelings. I know that this is a possiblity as some "completes" can feel a crease under their butt but that is all that comes of it. I was wondering if anyone has experienced anything like this early on in the injury? I do not expect Paul to gain too much back considering he is "text book" according to his injury. He has strong bicept movement, some wrist movement, no tricepts & no fingers. Perhaps it is a phantom pain of some sort?

  2. #2
    It is possible that this is neuropathic pain (not phantom pain, which applies only to amputations) but it is also possible this early that he is getting some return. When did he have his last ASIA exam? Did he have any sensation at the anus?

    It is unusual to have neuropathic pain just in the penis. Does he also complain about pain on the backs of the thighs or calves or the soles of his feet? These are innervated by the same spinal cord segments for sensation.

    (KLD)

  3. #3
    Check for uti.
    coolbreeze c6/7

    Keep on moving don't stop!

  4. #4
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    He has not had the ASIA test as far as I know. I will ask today about that. He said he can feel a "marble" in his anus sometimes... but he does not have any muscle control. I am also going to look into the UTI. He does have one right now. Perhaps this is his bodys way of telling him he has a UTI? I will wait and see if the sensation goes away once his infection has cleared up. I just find it odd that he can feel something... but I know that each injury is different. I just really hope for his sake he doesn't get feeling down there only. I would hate for him to feel the caths and digital stimulation all the time. That would really suck!

  5. #5
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    Me again... I just noticed something else. He does complain of pain in the soles of his feet. He says it feels like they are cracked open and bleeding? So - these nerves are all connected? This is so confusing but we will wait and see. I think that is what is so frustrating about this whole SCI injury... "wait and see". I am learning the art of patience that's for sure (c;

  6. #6
    You may want to look at some of the articles by Dr. Young on our home page. I would especially recommend this one so that you can learn more about the levels and types of injury and some of the functional anatomy.

    http://sci.rutgers.edu/index.php?pag...nalLevels.html

    Here is a picture that shows how the skin is innervated for feeling by the spinal cord.



    He should have had an ASIA exam done by his neurologist or physiatrist immediately after injury, and upon admission and discharge from rehab (at the very least) and then annually.

    (KLD)

  7. #7
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    4 month post c5/c6 asia a various feelings

    I am holding on to anything I can at this point... wondering if this is a possible sign of signifigant return. I am aware that we never get answers (time will tell) but I am posting this anyway (c;

    My spouse is a c5/c6 asia A - 4 month post now. He has all sorts of "sensations" and I was wondering how to get the best results from them.

    He feels his caths "fully" he knows where it goes in his body and also feels a burning sensation when I pull it out.

    He feels his hips espcially when his legs are hyper extended. The bones rub and "clunk" around and he can't stand it.

    He can now twich his baby toe and whole foot on his right side on command although it wears out after a few tries.

    He also has some back muscles and I believe perhaps a little stomach as well.

    He just started getting muscle spasms really strong in his legs. His spasams have always been strong in his arms.

    The rehab center only works with physio 1 hour a day 5 days a week. I feel he needs more. I do his stretches and range everyday. I make him focus on all parts of his body everyday. I just don't want to accept the asia A thing.

    I think the spasms are good for his muscles but they are crappy for him. The hospital just started him on Gavapentin (bad spelling?) I just don't want him full out medicated when he is getting sensations all over. I want to push him on physio. Excersice! All the time! I'm obsessed! He doesn't mind excersising either. He could move everything all day (and we do) with no assistance lol.

    I want to know that this is not a waste of time. Should we have any hope? It this the right thing to do? Or do we let the hosital dope him up and just accept that Asia A will not change?

  8. #8
    I have moved this so it flows with your previous posting here in February.

    Where did he do his inpatient rehab (which should provide at least 3 hours daily of PT and OT), and where is he getting therapy now as an outpatient? Does he have a good physiatrist? Has the PT and OT given him a home exercise program and equipment so he can exercise between outpatient therapy appointments?

    He needs another ASIA exam. We do them minimally at admission and discharge to acute rehab, then at 3 and 12 months, then annually, but more often if there appears to be any significant change (improvement or worsening) of impairments. It is likely that he is actually ASIA B at this point. Can he feel when his bowel care is done? Sensation at the anal sphincter is the determining factor.

    Does he actually have neuropathic pain (burning, shooting, electric, hot/cold, etc. type sensations below the level of his injury)? Is it actually interfering with his function and participation, sleep or other activities? If not, many people just put up with it. If it is interfering then gabapentin (Neurontin) is the most commonly used medication. It is not a narcotic or opioid, but actually an antiseizure medication. Dosage should be very gradually increased from 300 mg. daily to avoid oversedation or fuzzy thinking (the most common side effects, which not everyone gets). It can be given up to 3600 or 4800 mg. daily, but should only be increased gradually up to the level that helps with getting any neuropathic pain to a tolerable level. A physiatrist should be managing this if possible. There are other medications (Lyricia is the most common, as are tricyclic antidepressants like imipramine) and TENS is a non-medication treatment that should be considered as well. Opioids can be used, but frankly don't work very well and have the disadvantage of dependence and constipation. How long has he been on the gabapentin, and at what strength, and is it helping?

    It would be helpful if you would complete your profile so we know a little more about you and your husband.

    (KLD)
    Last edited by SCI-Nurse; 04-05-2009 at 01:27 AM.

  9. #9
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    They have performed the Asia Test just a couple weeks ago. I did not see the "anal" part of the test. He does feel his bowel routine and today he pushed it out. I think some return is just beginning now and it seems to be comming back a teeny tiny bit a day. I wonder if the hospital would listen to me and try a retest. Perhaps I will give it another week and then try for one again.

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