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  1. #1
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766

    Trying to decide

    Hi to all. I haven't been on the site much. But now I am faced with another decision. I now have an answer to some of the strange things that are happening. In January I was diagnosed with a condition called arachnoiditis . Of the 5 things listed to cause this problem , I have had 4. While most likely the spinal surgery did it ,I guess I won't ever know for sure. It is a progressive neurological pain condition.
    So far , I am being treated at Rush University in Chicago. I spent a week there at mid June under going an intrathecal medication study. It determined that I am not a candidate for opioid medication. Then we tried clonidine with a numbing agent with some success. However, I was told that I would build a tolerance to that drug and they needed a back up medication. So priault was tried. It is made from the venom of sea snails. Really weird. I did not do well on that either.
    A spinal cord stimulator is another option . in April the Dr from rush tried to get through the fusion to place the leads but could not do it. It would require another spinal surgery to remove a part of the fusion to create access to place the leads.
    I know there are members that have this so please let me know how it was accomplished.
    On Tuesday I meet with them again. I am armed with an arms length of questions.
    Since this condition has no cure, I can only hope to treat it. The neurological symptoms are increasing and I have a brace on one leg to prevent breaking my foot. In June I tripped on the other and broke it. So it looks like another brace. After it healed I fell again but just scrapes and bruises this time.
    I need to seek their guidance as to which treatment is the best option.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi...

    I've been approved for a spinal cord stimulator, but we've decided to try a one level decompression instead. (If that doesn't work, we'll probably proceed with the SCS.) I also had the trial placement surgery, and they couldn't get past the scar tissue.

    My understanding is that a laminectomy has to be done to gain access for the paddles. (They can place the smaller test leads without a laminectomy, but the paddles always require a laminectomy.)

    Did anyone mention a dorsal root ganglion stimulator? It's relatively new technology.

    https://paindoctor.com/treatments/do...g-stimulation/

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  3. #3
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    First of all good luck to you Linda. Thank you for the information. I will add it to my list of questions.
    The Dr did mention using a paddle. And that brought up the need for another spine surgery. We are trying to make that a last resort.
    Remember I had a muscle fail and we are trying not to compromise any more.
    The muscle transfer is doing well. It allows me to make most motions with my arm. A little stiff here and there but mostly good.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  4. #4
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Thanks Jackie... Are you on gabapentin?

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  5. #5
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    Not at this time. I have to stay clear of medication. It seems like everything gives me so many side effects.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  6. #6
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    And, gabapentin certainly has its share of side effects. (I can't take it.) Nonetheless, if you could avoid another surgery, it seems like it would be worth the risk.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

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