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Thread: Revision $ flatback syndrome

  1. #1
    Join Date
    Jul 2007
    Posts
    10

    Revision $ flatback syndrome

    im donna i underwent harrington rod surgery in 81 at 14 yo , it ended my gymnastics career, 27 yrs later i had a painful time going from sitting to standing and COULDNOT stand up fully erect.

    Tha pain in 06 started gradually getting much worse and i saw a PM dr who gave the usual vicodine soma valium to sleep. NO xrays at that time.

    It got so bad that i ended up on a walker and had to be out on co disablitty and went to Nevada spine ctr the surgeon did DT discograms MRIS CAT scans etc and found that my spine had severe DDD and also fixed kyphosis and in abiltiy to stand up .

    My spine took the shape of the rods and my spine is growing forward to where im hunched over. The pain is intractable and nothing helps, i wne tback to work after resting 9mos and doing 7 epidurals and a radio ffrequency ablation that was basically electricuting the spine by inserting needles and conducting electricity by needle into the spine and sending waves to kill nerves.

    I did this dec 07 and i had to be awake for the procedure and they used 8 idfferent needles and if they got the wrogn spot theyd pull out and re insert. I had to wiggle fingers and toes to make sure i wasnt paralyzed.

    Ive never had kids BUT i screamed like i was dying and said id never do it agian. My pain lessened to where i could take perocet 10mg and soma to go back to work but now 09 the effects have worn off and i did 3 more epidurlas, and they want to do another RFA, now they say i can be under anasthesia though.

    BOTTOM LINE, if you had harrington rods done up till 1984 you may find it note worthy that the proceudre got banned in the US due to complications that 1000s of us in the US are now sufferign through.

    Degenrative disc disease inability to stand erect and intractable pain, plus nerve damage etc.

    The corrective surgery is done by about 7 surgeons in the US thats it. THE SURGERY IS CALLED A PEDICLE SUBTRACTION OSTEOTOMY. THEY RESECT THE LUMBAR SPINE AND PUT CADAVOR SPINE IN PLACE AND ITS A 15 OR MORE HR SURGERY WITH ABOUT 30% IMPORVEMENT. WITHOUT INSURANCE I WAS TOLD ITS ABOUT 1/2 MILLION DOLLAR JOB.

    I have decided that in a couple of months i will seek out either Dr Larry Lenke at U of St Louis who founded the revision surgery or his assoc DR Bridwell at u of WA.

    They will enter through the abdomen and also through the back and its a very rsiky surgery. My current PM dr and surgeon on staff here in Vegas is great but the surgeon hasnt done enough of these procedures to be expert.

    Ive heard that with staff infection if you catch one a person can be in the hosiptal for up to a year. So im trying to pay off debt and im alone so im waiting for my old dog to pass so i would have no responsiblities.

    meanwhile for pain i now take Percocet 10mg , morphine, soma valium and they are switiching me to dilaudid for break though pain instead of percs. I jsut wnat the surgery if i can afford the time off work so i can get my life back. Ive leived with intractable severe pain with this diagnosis for 3 years now and if i cant have the surgery i don wanna live on pain meds.

    All i can do literally is go to work come home take my meds walk the dog, and recline till bed time. I cant walk or shop leisurely all i can manage are the necessities. Thats not a life at 42 yo or any age for that matter,

    IF YOU FIND YOU CAN STAND UP ERECT AFTER SITTING A WHILE AND HAD MY TYPE HARRIGNTON ROD JOB DONE PRIOR TO 1984 ID BET YOU HAVE FLATBACK SYNDROM AS I DO AND ITS A PROGRESSIVE THING IF UNTREATED WIHT MORE SURGERY YOU WILL BE ALL THE WAY BENT FORWARD ONE DAY

    HOPE THE INFO HELPS
    DONNA

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

    I'm glad you've found help. Drs. Lenke and Bridwell are both excellent surgeons.

    I wanted to correct a few of your statements. First, Harrington rod surgery was never banned, and is actually still used occasionally in the U.S., and regularly in some foreign countries. With proper implantation, flatback can be avoided.

    Also, the type of procedure used for revision can vary greatly. There really is no gold standard, because every patient is so different. If the original Harrington rod has to be removed, it can add a lot of time to the procedure. So, don't get concerned if Dr. Lenke or Bridwell recommend a different type of procedure.

    You can find a bunch of people who have undergone scoliosis revision surgeries, including some of Drs. Lenke and Bridwell's patients, here:

    http://health.groups.yahoo.com/group/Flatback_Revised/

    Good luck!

    Regards,
    Linda

    im donna i underwent harrington rod surgery in 81 at 14 yo , it ended my gymnastics career, 27 yrs later i had a painful time going from sitting to standing and COULDNOT stand up fully erect.

    Tha pain in 06 started gradually getting much worse and i saw a PM dr who gave the usual vicodine soma valium to sleep. NO xrays at that time.

    It got so bad that i ended up on a walker and had to be out on co disablitty and went to Nevada spine ctr the surgeon did DT discograms MRIS CAT scans etc and found that my spine had severe DDD and also fixed kyphosis and in abiltiy to stand up .

    My spine took the shape of the rods and my spine is growing forward to where im hunched over. The pain is intractable and nothing helps, i wne tback to work after resting 9mos and doing 7 epidurals and a radio ffrequency ablation that was basically electricuting the spine by inserting needles and conducting electricity by needle into the spine and sending waves to kill nerves.

    I did this dec 07 and i had to be awake for the procedure and they used 8 idfferent needles and if they got the wrogn spot theyd pull out and re insert. I had to wiggle fingers and toes to make sure i wasnt paralyzed.

    Ive never had kids BUT i screamed like i was dying and said id never do it agian. My pain lessened to where i could take perocet 10mg and soma to go back to work but now 09 the effects have worn off and i did 3 more epidurlas, and they want to do another RFA, now they say i can be under anasthesia though.

    BOTTOM LINE, if you had harrington rods done up till 1984 you may find it note worthy that the proceudre got banned in the US due to complications that 1000s of us in the US are now sufferign through.

    Degenrative disc disease inability to stand erect and intractable pain, plus nerve damage etc.

    The corrective surgery is done by about 7 surgeons in the US thats it. THE SURGERY IS CALLED A PEDICLE SUBTRACTION OSTEOTOMY. THEY RESECT THE LUMBAR SPINE AND PUT CADAVOR SPINE IN PLACE AND ITS A 15 OR MORE HR SURGERY WITH ABOUT 30% IMPORVEMENT. WITHOUT INSURANCE I WAS TOLD ITS ABOUT 1/2 MILLION DOLLAR JOB.

    I have decided that in a couple of months i will seek out either Dr Larry Lenke at U of St Louis who founded the revision surgery or his assoc DR Bridwell at u of WA.

    They will enter through the abdomen and also through the back and its a very rsiky surgery. My current PM dr and surgeon on staff here in Vegas is great but the surgeon hasnt done enough of these procedures to be expert.

    Ive heard that with staff infection if you catch one a person can be in the hosiptal for up to a year. So im trying to pay off debt and im alone so im waiting for my old dog to pass so i would have no responsiblities.

    meanwhile for pain i now take Percocet 10mg , morphine, soma valium and they are switiching me to dilaudid for break though pain instead of percs. I jsut wnat the surgery if i can afford the time off work so i can get my life back. Ive leived with intractable severe pain with this diagnosis for 3 years now and if i cant have the surgery i don wanna live on pain meds.

    All i can do literally is go to work come home take my meds walk the dog, and recline till bed time. I cant walk or shop leisurely all i can manage are the necessities. Thats not a life at 42 yo or any age for that matter,

    IF YOU FIND YOU CAN STAND UP ERECT AFTER SITTING A WHILE AND HAD MY TYPE HARRIGNTON ROD JOB DONE PRIOR TO 1984 ID BET YOU HAVE FLATBACK SYNDROM AS I DO AND ITS A PROGRESSIVE THING IF UNTREATED WIHT MORE SURGERY YOU WILL BE ALL THE WAY BENT FORWARD ONE DAY

  3. #3
    Join Date
    Jul 2007
    Posts
    10

    linda

    thank you my rods msut be removed so my susrgery is said to take more time and also they have decided to enter from stomache and then form the back. Im sure there are variations and harringtons are mostly used out of the countyr or for fusions not past L3 or 4 as you say

    But as you know thousands that were fused past L4 now have fixed sagital imbalance from the fusion past L4 and other factors. I talked with Dr Bridwell surgery scheduler she is nice and when i get a wk off i will be seen by him and get an idea of what im in for should i go for it
    thanks linda
    donna

  4. #4
    Join Date
    Jan 2006
    Location
    Tasmania
    Posts
    259
    Hi Donna. To say I know what you are going through sounds like I couldnt possibly, but I do and my heart goes out to you.

    I sincerely wish you all the luck in the world with getting everything fixed and do so hope that you are able to, I will be thinking of you and would appreciate it if you could just let me know who you are progressing.

    Hugs
    Mackyx
    Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
    Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

  5. #5
    Join Date
    Dec 2004
    Location
    Pa
    Posts
    123
    Hello Donna,

    My doctor, Dr. Wm Donaldson III, is in Pittsburgh and he has done many revisions. His father actually was a staff Dr. at A.I. Dupont's where I went as a teen for my scoli. Anyway, he is someone that you can put on your option list. A friend of mine came in from Michigan to see him and he actually recommended a doc closer to home for her and it all worked out. Good luck. Krysi

  6. #6
    Join Date
    Jul 2007
    Posts
    10

    hi Macky and Dalmatica

    thanks so much for reaching out with support and information, i have prokonged the surgery till i have peace about it from God. Im living on faith day by day i wish you all the best and hope you both recover.
    thanks donna madnsn2

  7. #7
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416
    Hi Donna
    I know exactly how you feel because I am going through the very same thing. But the only difference is that I had my fusion 10 month ago and did not have Harrington rods. I have been hoping I would get better, that it is because I am an adult pt as opposed to an adolescent. But it does feel like I am disabled at 49. I too am unable to shop, walk the dogs, garden.....If I sit for awhile I have to really try to straighten myself but I cannot maintain the position. My back feels so stiff like I have no lumbar curve and my pelvis even feels tilted wrong so one leg is shorter. My legs are constantly fatigued when I walk because their not in a natural position. I just want to be able to walk normal like everyone else. My surgeon says everything looks fine.
    I hope you find a solution. I really know how you feel and how frustrating it is to be so young but feel so old!!!
    Kristy
    May 2008 Fusion T4 - S1, Pre-op Curves T45, L70 (age 48). Unsuccessful surgery.

    March 18, 2010 (age 50). Revision with L3 Osteotomy, Replacement of hardware T11 - S1 , addition of bilateral pelvic fixation. Correction of sagittal imbalance and kyphosis.

    January 24, 2012 (age 52) Revision to repair pseudoarthrosis and 2 broken rods at L3/L4.

  8. #8
    Join Date
    Jan 2006
    Location
    Tasmania
    Posts
    259
    Ooh Kristy thats terrible you poor thing. Have you been back to the doctor honey to see if the fusion has taken properly??

    Macky xx
    Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
    Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

  9. #9
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Quote Originally Posted by naptown78 View Post
    Hi Donna
    I know exactly how you feel because I am going through the very same thing. But the only difference is that I had my fusion 10 month ago and did not have Harrington rods. I have been hoping I would get better, that it is because I am an adult pt as opposed to an adolescent. But it does feel like I am disabled at 49. I too am unable to shop, walk the dogs, garden.....If I sit for awhile I have to really try to straighten myself but I cannot maintain the position. My back feels so stiff like I have no lumbar curve and my pelvis even feels tilted wrong so one leg is shorter. My legs are constantly fatigued when I walk because their not in a natural position. I just want to be able to walk normal like everyone else. My surgeon says everything looks fine.
    I hope you find a solution. I really know how you feel and how frustrating it is to be so young but feel so old!!!
    Kristy
    Hi Kristy...

    I think it may be time to get another opinion.

    Regards,
    Linda

  10. #10
    Join Date
    Dec 2004
    Location
    Pa
    Posts
    123
    Kristy,

    I agree with Linda. I think you need a second opinion pronto!

  11. #11
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416

    second opinion

    Thanks for the advice. I go for my one year appt in 2 month. I have been thinking of moving it up because I am so tired of living this way. If my doc still says I'm fine I will go get a second opinion. I know within myself that I'm not right. Sometimes I wish I could put other people inside my body for a day so they could understand. Its so hard to explain how I feel.
    May 2008 Fusion T4 - S1, Pre-op Curves T45, L70 (age 48). Unsuccessful surgery.

    March 18, 2010 (age 50). Revision with L3 Osteotomy, Replacement of hardware T11 - S1 , addition of bilateral pelvic fixation. Correction of sagittal imbalance and kyphosis.

    January 24, 2012 (age 52) Revision to repair pseudoarthrosis and 2 broken rods at L3/L4.

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