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Thread: Trying to decide

  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.

  7. #7
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    I agree. When I mentioned the side effects the Dr said there is a new medication that we might try but I don't know what it is called. I don't think it would be the total answer. The arachnoiditis needs care. There is no approved surgery to help with that. Also who would want a surgery directly in the spinal cord that may not help. It would be an attempt to cut the webbing between the nerves. It was never suggested by the neurosurgeon. The L5 level is comprised by a bone spur but he also said the risk is too great. He would have to undo parts of the fusion and e considered it too risky.
    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

  8. #8
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,547
    Jackie

    I don't know what to say other than that I am so sorry that you are experiencing this.

    I did stumble upon a site where(Oral) Medrol packs (Methylpredinosone) are used, which is what I was given for my cervical herniation's. You might recognize some of the medications used in this article.

    Notice that they recommend using a rocking chair.....

    Melissa was also a candidate for a stimulator, but declined it, and also quit her meds a few years ago.

    https://www.practicalpainmanagement....tment?page=0,1

    I cant imagine how painful this must be....

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  9. #9
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    The pain is there but I am more worried about the neurological problems.they do seam to be progressive. I have a brace on one leg and may need one on the other.I see the Dr on Tuesday. I guess we will decide the course of action.
    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

  10. #10
    Join Date
    May 2010
    Posts
    345
    Hi Jackie, I'm so sorry to see you have yet another problem to deal with. It seems that some of us can't stay out of the Drs. Office!! I was wondering why you are not a candidate for opioids medication? Is it the type of pain it is? Wow! This is a low blow for you!! I hope you find the answer to this problem!! Please keep us posted~~ warmly, Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  11. #11
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    Jackie,
    I am so sorry you are having these problems.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  12. #12
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    Thanks for all the nice wishes. I am not a candidate for opioid medication because of the side effects. I have severe nausea. This last time even direct delivered in the spinal cord and using micrograms of opioid meds, I vomited for three days. We used anti nausea meds but it made no difference. So it limits the meds we can use.
    One medication was real effective.
    I passed the neurologist test.
    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

  13. #13
    Join Date
    May 2010
    Posts
    345
    Quote Originally Posted by jackieg412 View Post
    Thanks for all the nice wishes. I am not a candidate for opioid medication because of the side effects. I have severe nausea. This last time even direct delivered in the spinal cord and using micrograms of opioid meds, I vomited for three days. We used anti nausea meds but it made no difference. So it limits the meds we can use.
    One medication was real effective.
    I passed the neurologist test.
    OMG!!! I guess you are deffinatley allergic to opioids!!! I'm glad you found an effective medication. Glad they were diligent in finding something to help you. You've certainly had your share of medical problems!!!! Wishing you the best~~ I know what living with adversity is all about Jackie~~ warmly, Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  14. #14
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    Ed I read the article. It gives a lot of information. It mentions rocking. And I quess that is why I rock back and forth when I'm being bothered.
    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

  15. #15
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,547
    Jackie, You mean rock back in forth in pain.....A lot of us know, I paced after my surgeries in my recovery, almost wore the floors out in my home. This movement was probably a good thing....

    Here are a few interesting videos...(For all of us)

    Dr Tennant....Diagnosis and treatment of Arachnoiditis
    https://www.youtube.com/watch?v=3epmtDBTj4c

    Dr Burton.....
    https://www.youtube.com/watch?v=wrvRf8fxmTY

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

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