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Thread: Spinal Stenosis Surgery and Scoliosis/Kyphosis Surgery. Destabilizing if separate?

  1. #1
    Join Date
    Oct 2009
    Location
    PA
    Posts
    798

    Spinal Stenosis Surgery and Scoliosis/Kyphosis Surgery. Destabilizing if separate?

    Although owing to breast cancer I can't proceed with active planning for spinal surgery for the foreseeable future (the cancer is to be staged within weeks, after surgery), I am still investigating aspects of what I can do for my spine.

    Consulting with an old friend I just tracked down, reinforced me in my sorrow and concerns about the neurological deficits resulting from my spinal problems (This friend is a dual-certified psychiatrist and internist, thus in a unique position to advise me). When I confided in him that I suffer from both urinary and fecal incontinence ("mild" cauda equina syndrome) as well as colonic hypomotility (from nerve damage), he was horrified. Apart from the mortality risk of the cancer, he reinforced my sense that the nerve damage was even "more important" to deal with.

    Even though it is impossible to fully separate the effects of the spinal stenosis and Tarlov cysts (large fluid filled sacs in the sacrum) in causing these social catastrophes, they are a fact of life and require constant coping of the most delicate kind (variable narcotic consumption for pain, complicated this). "Only" intermittent though worsening, I am in despair about them especially as I was unable to pursue spinal surgery because of family dysfunction (how to undergo it without help, at least in the immediate recovery period?).

    I seem to recall Linda Racine's stating that patients suffering from spinal deformities (scoliosis and/or kyphosis) could not undergo spinal stenosis surgery for fear of destabilizing their spines. The longer I wait for deformity surgery, the longer the involved nerves are pinched and the less chance there is of their recovering any of their function (and relieving the elimination problems which for me are as bad as my physical pain). Christopher Shaffrey of UVA (dual certified in neurosurgery and orthopedic surgery) stated in 2010 that he would only operate on me if I could demonstrate that my incontinence issues were spinal in origin. Elaborate urological and ENT work ups satisfied him on this score, but I wasn't able to proceed then as described.

    I am wondering if anyone (Linda?) has any idea about whether micro-invasive surgery (I had such decompression surgery on my cervical spine in 2007) MIGHT be undertaken to relieve at least in part, the nerve impingement (L5-S1?) causing the incontinence and colonic insufficiency - as well as foot drop, which began two years ago. That might, I hope, prevent the neurological deficits from worsening while waiting to attempt a more comprehensive surgical solution.

    I know this is a very technical question, but I hoped maybe someone else will have had experience with such problems. I assure you that even on this specialized board, I feel deeply embarrassed to discuss them, especially the effects of the spinal cord damage on colonic cleansing.
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,951
    Quote Originally Posted by Back-out View Post
    I seem to recall Linda Racine's stating that patients suffering from spinal deformities (scoliosis and/or kyphosis) could not undergo spinal stenosis surgery for fear of destabilizing their spines. The longer I wait for deformity surgery, the longer the involved nerves are pinched and the less chance there is of their recovering any of their function (and relieving the elimination problems which for me are as bad as my physical pain). Christopher Shaffrey of UVA (dual certified in neurosurgery and orthopedic surgery) stated in 2010 that he would only operate on me if I could demonstrate that my incontinence issues were spinal in origin. Elaborate urological and ENT work ups satisfied him on this score, but I wasn't able to proceed then as described.
    While this is mostly true, it's not an absolute. If you're young, the reduction of posterior column spinal elements will have more time to allow destabilization to occur. For older patients, or patients who have other serious medical conditions, decompressions are sometimes the best option. Find a doctor you can trust (Chris Shaffrey would be good), and trust that they'll know the literature and can give you a good idea of the risks and benefits.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  3. #3
    Join Date
    Aug 2012
    Location
    San Francicsco Bay Area
    Posts
    127
    Just wanted to say how very sorry I am to hear about your breast cancer. I will say a prayer for you right now.
    Hang in there.
    T1
    1st surgery: Fused T1-L3 in 1987 with contoured Harrington Rods. Rods broke at top.
    2nd surgery: Re-done two weeks later; fused C7-L3. Left in chronic pain.
    3rd surgery: Hardware removal 1997, but still pain for 30 years.
    4th Surgery: Fused to the sacrum in 2016. Came out of surgery with left foot paralysis. (Drop Foot) Can't walk on my own.
    I'm blessed to have found my peace and reason to live not from a husband or kids (I have none) but from God and within myself.

  4. #4
    Join Date
    Jan 2010
    Location
    Columbus, OH
    Posts
    15
    Have you contacted Dr. Donlin Long in Maryland or Dr. Frank Feigenbaum in Texas regarding your Tarlov Cyst? They are neurosurgeons who specialize in this and will both do a free telephone consult if you send them your MRI. Dr. Long no longer does surgery but refers his surgical patients to Dr. William Welch at Penn. Dr. Long also has a urologist he consults with for Tarlov based issues, Dr. David Gordon at Mount Sinai in Baltimore and he has consulted with Dr. Kebaish at Hopkins for my scoliosis as well. I also have a symptomatic Tarlov cyst which is what has prevented me from having scoliosis surgery. Pm me if you have any questions about my experience with these providers.
    Interestingly, at my last consult with Dr. Long he referred me for testing for Ehler Danlos even though I don't have the classic hypermobility associated with it although my mother did and my three children do. I have a two year wait for that appointment though.

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