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Thread: one more try and anyone use Prialt

  1. #1

    one more try and anyone use Prialt

    As the summer ends and I spiral downward my GP and Pain doc sent me to one more specialist at Beth Israel in NYC. Dr DoOuro.

    Sharp lady, read my reports, looked at my images, did some tests (do docs get used to send patients into spasms and agony).

    Said, you know you have CP and by now you likely know there is no cure or really good treatment. But. I think your pain pump trials were poorly executed and this is really the only option I can offer. My pain pump trials were a bolus at ~ L3-5 and turned off my bladder and bowels. She said with a serious Cuada Equina injury and the resulting dysfunction of course a bolus there would do that. She also thought a cocktail would be of much more value than the one shot morphine or dialaudid.

    She's going to admit me into Beth for 8 days, put a cath relatively high in my cord and play with a cocktail to reduce the spasms and tone and reduce some of the pain. She felt with the complexity of the case she'd need the time and if I lived in NYC she'd let me go home one maybe 2 nights if all was well and I could get in quickly if necessary but as I'm an hour + away she wants me in for the trail through to the implant.

    She also thinks Prialt might be beneficial to me and will try it along with all the usual suspects and can evaluate any changes and B&B issues quickly and modify the cocktail to help.

    She was clear this is not a full fix but felt she could really help and knowing I'm reaching my limit to cope felt she offered a really good chance of enough relief to make life a viable option. She said worst case you know where you are and I won't make it worse. She felt 30-60% improvement was possible but felt strongly she could manage the frequency and severity of the spasms.

    Setting it all up, getting the preop medicals and psych and should be in Oct 9.

    Her reputation and success is extremely high for the hard core cases and my GP is extremely hopeful and encouraging that I try this one more time, seeing my Pain doc tomorrow but he'd hoped I'd get a crack at Prialt for a while and he and my GP were my referring docs, apparently she's hard to get to and you need referrals as well as a "good patient" reference.

    so, one more time but with limited expectations.

    ket
    Kindly,

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

  2. #2
    Fingers crossed.

  3. #3
    This sounds hopeful. My fingers are crossed for you, as well!

  4. #4
    Please think long and hard before you try the Prialt. Rybread has posted about his experience with it here and it was NOT positive. Just do a search on Prialt and you'll find some posts from him on the subject, along with one or two other people who have kicked in with their experience. Sad to say, but I have yet to read a positive experience with it.

  5. #5
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    Quote Originally Posted by David Berg View Post
    Please think long and hard before you try the Prialt. Rybread has posted about his experience with it here and it was NOT positive. Just do a search on Prialt and you'll find some posts from him on the subject, along with one or two other people who have kicked in with their experience. Sad to say, but I have yet to read a positive experience with it.
    Is that the medicine made out of snail toxin or something like that?
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  6. #6
    Senior Member fromnwmont's Avatar
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    I have not tried prialt, but wanted to wish you good luck, glad you found a DR willing to try another approach, I had given up a few months ago after PT said it is what it is & I needed to deal with it (pain lack movement) but a pain Dr. Said bunk we can make you much better brought me out of my funk...go for it time for some relief.

  7. #7
    Quote Originally Posted by swh2007 View Post
    Is that the medicine made out of snail toxin or something like that?
    That's the one.

  8. #8
    That stuff didn't work for me at all. It actually caused my pain to be much sharper and caused some severe memory problems that I think I'm still suffering. I've had lots of things and Prialt had to be the worst of everything I've tried. I'm having the best luck with bibucaine. I notice a big difference when it's turned down. It helps a little but some days it's just too intense and it doesn't feel like it's helping at all. My opinion, stay away from Prialt. I believe I'm still suffering memory problems from it for maybe you'll have better luck with it than I did
    C-5/6, 7-9-2000
    Scottsdale, AZ

    Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

  9. #9
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    Quote Originally Posted by David Berg View Post
    That's the one.
    A pain doc down here tried to get me to do that. He said it would completely rid me of CP. I then went to a neuro over at the University of Miami and recommended against it.

    But, my pain isn't as bad as the OP and I might still try it if I was at my wits end and nothing else works, especially if the doctor had a great rep. Constant pain is worse than a bad memory.

    What does dejerine think? I think I asked him about it once and he was not encouraging. But I am not sure. Bad memory from my pills, I guess.
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  10. #10
    All duly noted but my current path is suicide Jan 31 2013, and with zero not one fucking bit of relief from anything and the inability to tolerate oral baclfoen skelakin and virtually all anti spasm meds I'll go forward. Have broken teeth, fingers, toes etc in spasms and clenches from pain. puke, pass out.

    Have memory loss from opiates and don't know who I am when titrated up still with no relief so wtf? it helps or I have a backup plan.
    Kindly,

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

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