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Thread: Update: "Concerned since 'incident' caused severe spasms"

  1. #1

    Update: "Concerned since 'incident' caused severe spasms"

    Hi Guys,

    About 18 months ago I made this post regarding getting a whack in the groin causing severe spasm. To save flicking between posts I've quoted the post below...

    Well this is embarrassing to write, but about 3 weeks ago I was fooling around with a ladyfriend. Now, for me to occasionally ejaculate I need very vigorous stimulation to my penis. So after a while she started use her hand to finish me off, getting quite fast and I could feel the base of her fist hitting my pubic area.

    The next thing I knew my body went completely rigid, almost painfully so. My head went over the backrest and my legs jumped right out off the footplate infront of me. Now when I ejaculate my body goes quite rigid, and oddly enough only one of my legs spams straight forward off the footplate. This wasn't anything like that, it was 100x worse.

    Soon after I went to bed for the night but after just a few minutes my legs started to spasm. They would go straight, shake, relax and bend up slightly... then lock straight, shake, relax... this was a cycle that would keep happening every minute or two. My fingers would also shake. The only way I could stop the spasm and sleep was to pull my knees right up into a fetal position. I have never had a night like it, or continuous spasms like that in my 16 years as a quad.

    These spasms have been the same every night since. I'm not bad sat up, but not long after laying down they will start.
    Well things are no better. My spasticity is horrendous and towards the end of the last summer until recently I began getting thrown over the back of my wheelchair on to the floor with such violent spasm. I still have pain in my right groin, hip and lower right abdomen.

    Before the incident I was on no regular spasm medication, except the odd 50mg of dantrium before bed if I felt a little twitchy. Now I am taking the following...

    Dantrium - 50mg, 4 x daily
    Baclofen - 30mg, 4 x daily (apparently the max. dose is meant to be 80mg/daily?!)
    Diazepam - 4mg, 3 x daily, 10mg before bed
    and Tizanidine (Zanaflex?)

    I also have to smoke or eat cannabis regularly to ease the tightness.

    I am also taking both paracetamol and ibuprofen on occasion. The most effective seems to be the diazepam, pain killers and the cannabis.

    So far multiple x-rays have showed nothing. I have also have the usual SCI battery of tests such as MRI of the spinal column for trapped nerves, slipped discs or cysts. Urodynamics, bladder and kidney ultrasounds, the works... yet nothing has shown up.

    All this time I have been wanting them to "look outside the box" for a non-SCI related injury, but other than x-ray this has not been done. On my first appointment after the inital post last year my consultant told me that they could check for internal inflammation, hence a tissue injury, by using a dye under x-ray? Again in all this time that has never been done.

    They have been wanting to fit a baclofen pump, but I have refused as I wanted to find a cause rather than just treat the symptoms.

    I have today received a letter which basically reads that nothing more can be done. It reads...

    "It appears probable that you hurt yourself"

    No shit, I told you that 18 months ago!

    "Localising and identifying the area of injury is difficult as unfortunately you do not have the sensation that allows one to localise more specificially"

    Erm, remember where I said I got the whack and that the pain is in my right groin, hip and lower right abdomen? Surely that isn't to big an area to check out?!

    "I do not know of any scan that will allow us to look at the area of discomfort"

    So what about that infammation test you told me about?

    And he ends saying I can been seen by another consultant at another unit to see if they can achieve a diagnosis.

    So basically that's it, they are saying there is nothing more they can do.

    Do any of the experts here have any idea what could be done to find what could be causing these spasms... anyone willing to take on a challenge and admit me? PLEASE! Or can anyone suggest anyone the UK who may be able to help? I'll even sell my house if I have to end up paying private, that's how desperate I am. Where's Gregory House when you need him!

    Anyway, I'm so fed up and so down all the time. I barely leave the house anymore.


    Andy.
    Last edited by Andy C; 08-06-2007 at 06:16 PM.
    C5/6 Tetraplegic, injured since 1990.

  2. #2
    That letter is unsatisfactory. If the physician says you "hurt yourself" they need to come up with an actual diagnosis. In what way? A hematoma? A muscle strain? A broken bone? What evidence do they have? I would be calling them back and ask for more information. Are they setting you up with the consultant who will actually know what they are doing, or are they just washing their hands of you and leaving you to fend for yourself?

    Sorry I can't help with resources within the UK other than to suggest that you seek care through a major SCI center.

    (KLD)

  3. #3
    I suggest that you see a surgeon. You may have a small groin hernia that many physicians cannot detect since they don't do this everyday. Even if this isn't it, you need another perspective.

  4. #4
    Quote Originally Posted by David Varner Jr.
    you need another perspective.
    That's exactly it... we need to be looking outside the area of SCI related causes of increased spasm...


    A.
    C5/6 Tetraplegic, injured since 1990.

  5. #5
    Quote Originally Posted by SCI-Nurse
    That letter is unsatisfactory. If the physician says you "hurt yourself" they need to come up with an actual diagnosis. In what way? A hematoma? A muscle strain? A broken bone? What evidence do they have? I would be calling them back and ask for more information. Are they setting you up with the consultant who will actually know what they are doing, or are they just washing their hands of you and leaving you to fend for yourself?
    (KLD)
    Thanks for the reply, KLD.

    My consultant is the top guy at my SCI clinic and it is apparently one of the best in the country. He hasn't actually stated that I hurt myself, he has said "It appears probable", in other words that's all he can think of, even though it's what I have said all along. He then says it's more than likely being re-hurt as a consequence of the spasm. And no doubt day to day activities, transferring etc. imo.

    The letter ended stating the either he or my GP can arrange for me to be seen by another consultant at another unit to see if they can achieve a diagnosis. So it sounds like they're done with me, but if I want I can be referred for a second opinion.

    I have a feeling I've badly damaged one of the tendons runing from the groin down the thigh... but I would have thought this would show slightly x-ray, rather than just mri?

    I've wasted 18 months of my life with this and I can't stay drugged up to the eyeballs, not only does nothing get done, but they can certainly mess with your head.


    Andy.
    C5/6 Tetraplegic, injured since 1990.

  6. #6
    Soft tissue injuries show up best in a CT or MRI, not well at all with Xray. Did you have either for the area you mentioned? Was a hernia ruled out?

    (KLD)

  7. #7
    Quote Originally Posted by SCI-Nurse
    Soft tissue injuries show up best in a CT or MRI, not well at all with Xray. Did you have either for the area you mentioned? Was a hernia ruled out?

    (KLD)
    Hi KLD,

    I have not had a CT or MRI of the 'sore' areas, no. Nor have I been checked for a hernia and he claims they are dfficult to repair as it replies on good muscle tone.

    I have only had the following routine tests...

    • Bladder/Kidney Ultrasound -- OK
    • Abdominal X-Rays - OK
    • Urodynamics -- OK, although small bladder (suprapubic user)
    • C-Spine MRI for cysts -- OK
    • T, L and S Spine MRI for trapped nerves/slipped discs -- OK

    My consultant claims there are no other tests to pinpoint the area of discomfort. I will scan his last letter soon...

    I did write back saying I was disappointed and requested a soft tissue scan, but I have not had any response.

    I really need help with this and am willing to travel if anyone is wanting a challenge!

    Acupuncture by a good chinese trained acupuncturist has been suggested to help relieve some of the symptoms, which I'm considering. Anything is worth a try right now.



    Andy.
    C5/6 Tetraplegic, injured since 1990.

  8. #8
    Senior Member
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    Andy - I am sorry to hear about these troubles! I think you should definitely try acupuncture for pain management, I've used it a little and was amazed at how effective it could be. Best of luck with your recovery!

  9. #9
    Andy, really sorry to hear about this. Who is your consultant? Are you under the care of Stoke Mandeville? That letter was pretty negligent. I might be able to recommend a better physician since I switched centres myself.

  10. #10
    Quote Originally Posted by Cherry
    Andy, really sorry to hear about this. Who is your consultant? Are you under the care of Stoke Mandeville? That letter was pretty negligent. I might be able to recommend a better physician since I switched centres myself.
    Hi Cherry, thanks for the reply.

    I'm currently under Tony Tromans at Salisbury. I just can't understand why he hasn't yet, and wont do a soft tissue scan.


    A.
    C5/6 Tetraplegic, injured since 1990.

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