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Thread: Cervical AVM & SCI

  1. #11
    Junior Member
    Join Date
    Jul 2005
    Location
    Pennsylvania
    Posts
    9
    Sue,

    Thanks again for your response. I’m sorry it took so long for me to respond back. I really enjoy conversing with you. You have given me a lot of good information. As you can see I have not had many responses to my post. I would like to continue talking with you. Maybe it would be easier to talk via private messages. If you feel comfortable with that.

    I’d like to know more about how you are doing. I hope to hear from you soon.

    Debbie

  2. #12
    Hi Deb,

    My paralysis is due to an AVM at T2 level. I'm 56 and I've been paralyzed 3 years now. I was so sure that I had MS. I just fit the symptom list and while waiting for an appointment for an MRI to either rule in or out the MS, I got up one morning and before the day was over I was paralyzed. Before they could diagnose it and do the necessary lamenectomy to remove the AVM the damage was done and I was paralyzed from my waist down.

    I never had a bleed. Apparently it would swell up and affect me at times and then go back down. Thank God and Dr. Scott Shapiro (of Lance Armstrong's surgery) that I came out of my lamenectomy without suffering any or all of those consequences that they warned me about just before going under.

    Spasms, my spasms are so bad. They interfere with everything from transfers to trying to cath. I'm like trying to cath a Venus Fly Trap. The slightest bit of stimulation sends my legs into spasms although I take about 80 mgs. of oral Baclofen a day. I have taken as much as 140 mgs. in a day but the added dosage doesn't seem to help that much. I have been offered both medical marijuana and Valium but have chosen not to go that route. Just not convinced that more pills are the answer without too many other side effects.

    When I transfer into bed until my legs can be bent to break them, the spasms come up into my stomach and diaphram and take my breath. I can't lay flat at all. I have to sleep in a semi sitting position otherwise I just lay in waves of spasms. My feet have to be strapped to the footplate of my wheelchair all of the time because they spaz straight out, my back arches, my bottom slides forward to the edge of my chair and I would slide right out of it were I not belted in both feet and lap.

    Last fall I did go to Indianapolis to the IU Med Center and had a Baclofen Pump trial done. I was diagnosed, on a scale of 1-10 with 10 being the worst for spasticity and rigidity, as an 8. After the injection, I have to say that it was so wonderful to go for practically an entire day just sitting normally, peacefully. I'd forgotten what that felt like. I could ride in the van without fighting to stay back in my chair everytime that we hit a little bump in the road. I just haven't made a decision to have the little machine put in my body. The doctor and the Medtronics rep think that it is just a no brainer to get the pump for someone like me. I don't know why I'm not convinced IF the pump works as good as the trial and no side effects from oral medications.

    I've never met anyone else who had an AVM. I think that we are few and far between.

  3. #13
    Quote Originally Posted by itsjustme
    I've never met anyone else who had an AVM. I think that we are few and far between.
    Well you're not alone. My T4 paralysis was the result of a ruptured AVM 23 years ago. I'm now 47. My spasticity was much greater in the early years than it is now. Like you, I took pretty sizable doses of oral Baclofen but I don't think it ever had much of an effect and it's now been many years since I l last used it.

    I can't explain why my spasticity has calmed down so much. I don't take any medication to treat it nor do I spend much time doing range of motion (ROM) exercises any more -- though my ROM is quite good, all things considered.

    One surefire treatment for spasticity is penile vibratory stimulation (PVS). Its intended use is to trigger a reflex ejaculation (by stimulating the head of the penis) which enabled me to knock up my wife, but it has the secondary benefit of also, temporarily at least, knocking out leg spasticity. PVS is accomplished with the use of a high oscillating vibrator. The Ferticare is the best known example but is quite expensive. Some garden variety drug store type vibrators have been used successfully as well.

    There is a very important CAUTION when attempting PVS -- it will trigger autonomic dysreflexia (AD). Depending on the severity of the AD, this can be a contraindication to attempting this. You absolutely must consult your SCI specialist about this before proceeding on your own. This should first be attempted in the controlled environment of a physican's office so that your blood pressure can be monitored. A severe and sustained spike in blood pressure can result in stroke in vulnerable SCIs. Needless to say, no one needs a stroke on top of an already existing SCI.

    -----------------------------------------------------------------------------------------------------

    Arch Phys Med Rehabil
    Vol. 85, June 2004
    ANTISPASTIC EFFECT OF PENILE VIBRATION IN MEN WITH SPINAL CORD LESION
    Line Laesoe, MD; Jens Bo Nielsen; Fin Biering-Sorensen, MD; Jens Sonksen, MD
    ABSTRACT
    Objective: To evaluate the possible antispastic effect of penile vibratory stimulation (PVS) in men with spinal cord lesion (SCL).
    Design: Unblinded, before-after trial.
    Setting: Ambulatory Care.
    Participants: Nine men with SCLs from C2 to T8 were randomly allocated into 2 groups.
    Intervention: Twenty-four hours of electromyographic recordings from the quadriceps and tibialis anterior muscles were taken, followed by PVS or no treatment and another 24 hours of electromyographic recordings. The presence of electromyographic activity of an amplitude 4 times the baseline, with a duration of more than 5 seconds, was taken to signify a spasm. The number of spasms per hour was calculated before and after PVS and no treatment. Spasticity was evaluated by the Modified Ashworth Scale (MAS).
    Main Outcome Measure: Reduction in spasticity and spasms.
    Results: The electromyographic data showed a significant reduction in the frequency of leg spasms up to 3 hours (P<.05). Significantly decreased spasticity, as evaluated by MAS, was found immediately after vibration (P<.01).
    Conclusions: PVS may be useful as an antispastic therapy.
    Last edited by stephen212; 03-30-2007 at 01:26 PM.

  4. #14
    Senior Member
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    .............
    Last edited by Leif; 03-31-2007 at 05:55 AM.

  5. #15
    Junior Member
    Join Date
    Jul 2005
    Location
    Pennsylvania
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    Quote Originally Posted by itsjustme
    Hi Deb,

    My paralysis is due to an AVM at T2 level. I'm 56 and I've been paralyzed 3 years now. I was so sure that I had MS. I just fit the symptom list and while waiting for an appointment for an MRI to either rule in or out the MS, I got up one morning and before the day was over I was paralyzed. Before they could diagnose it and do the necessary lamenectomy to remove the AVM the damage was done and I was paralyzed from my waist down.

    I never had a bleed. Apparently it would swell up and affect me at times and then go back down. Thank God and Dr. Scott Shapiro (of Lance Armstrong's surgery) that I came out of my lamenectomy without suffering any or all of those consequences that they warned me about just before going under.

    Spasms, my spasms are so bad. They interfere with everything from transfers to trying to cath. I'm like trying to cath a Venus Fly Trap. The slightest bit of stimulation sends my legs into spasms although I take about 80 mgs. of oral Baclofen a day. I have taken as much as 140 mgs. in a day but the added dosage doesn't seem to help that much. I have been offered both medical marijuana and Valium but have chosen not to go that route. Just not convinced that more pills are the answer without too many other side effects.

    When I transfer into bed until my legs can be bent to break them, the spasms come up into my stomach and diaphram and take my breath. I can't lay flat at all. I have to sleep in a semi sitting position otherwise I just lay in waves of spasms. My feet have to be strapped to the footplate of my wheelchair all of the time because they spaz straight out, my back arches, my bottom slides forward to the edge of my chair and I would slide right out of it were I not belted in both feet and lap.

    Last fall I did go to Indianapolis to the IU Med Center and had a Baclofen Pump trial done. I was diagnosed, on a scale of 1-10 with 10 being the worst for spasticity and rigidity, as an 8. After the injection, I have to say that it was so wonderful to go for practically an entire day just sitting normally, peacefully. I'd forgotten what that felt like. I could ride in the van without fighting to stay back in my chair everytime that we hit a little bump in the road. I just haven't made a decision to have the little machine put in my body. The doctor and the Medtronics rep think that it is just a no brainer to get the pump for someone like me. I don't know why I'm not convinced IF the pump works as good as the trial and no side effects from oral medications.

    I've never met anyone else who had an AVM. I think that we are few and far between.
    I'm sorry to be so long to respond. My health is on and off and so it sometimes takes me a while to get back to people. I'm sorry to hear about everything you've been through. I have had the same doubts about having a pump put in if it got to that point with me. I haven't had to consider that yet. Right now I'm still experimenting with different levels of oral medications.

    You are right there are not many people with spinal AVM's. 90% of AVM's are in the head, but we are out there. Here is a link to an AVM web site that provides support.

    http://www.westga.edu/~wmaples/

    I have found it to be very helpful and I think that you will as well. Let me know how things are going.

    Deb

    P.S. Leif, thanks for the link. I promise I'll catch up with you soon.

  6. #16
    Hi Deb,

    Thanks for the link. I'm sure that there's lots of good shared information there.

    I've talked to a few people on the Apparelyzed forum about the Baclofen pump and the ones who love it wouldn't be without it. I can't help wondering if the ones who experience some of the problems that they do have been more due to the doctors rather than the pump itself. The doctor that I consulted with had an exemplary record with his patients and pump implantations.

    Thanks again for the response and I'm sure that we'll run into each other again.

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