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Thread: Multiple Surgeries and Still No Relief

  1. #1
    Join Date
    Nov 2010
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    Multiple Surgeries and Still No Relief

    First diagnosed at age 12 with scoliosis. I underwent two fusions from T-1 to S-1. At that time (1960) they used bovine (cow) bone grafts to fuse my spine. I had body cast and Milwaukee brace for about 1 year. I recovered well and was very active. In 1980 my body started rejecting the bovine grafts and underwent two more surgeries harvesting bone from my hips. Again body casts, etc. Again recovery went well until 1989 and started having low back pain and radiating down my right leg. My doctor at the time said there wasn't anything else to do - just live with the pain. After lots of research I located a doctor who referred me to another doctor 4 hours away but who dealt with adult scoliosis patients with previous surgeries. This doctor was wonderful. Unfortunately I underwent more surgeries. This time it was to remove all bone grafts and rods. More casts, braces. Once again I recovered well. After a few years the pain started again in low back radiating down my right leg. I eventually had to retire on disability in 1999. Since that time I have had everything from PT to shots and it continues to worsten. My primary care doctor suggested I would be a candidate for a neurostimulator or pain pump and was referred to a pain management doctor who told me that he wouldn't touch somebody with my extensive history. This has taken its toll on me personally, financially and relationship wise. I am wondering if anyone has had a similar situation and their experiences. I am getting another referral to a different pain management doctor. I don't live in a large metropolis and it is difficult for me to travel far distances but I am at my wits end. I look forward to hearing from you as this is a very important forum. There's so much more to tell but don't want to bore you any longer...

  2. #2
    Join Date
    Aug 2009
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    1,164
    I don't know where you're located, but if you're in the US, I'd strongly recommend seeing a scoliosis specialist. You can find them listed at www.srs.org.

    There's no reason, in this day and age, for someone to have to bear non-stop pain.

    Please let us know how things turn out.

  3. #3
    Join Date
    Sep 2003
    Location
    NJ
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    1,291

    Question Pain Pump

    The reason a pain pump into the epidural space is not possible is because the normal spaces through which epidural medication is injected is fused shut. That's why the pain doc would not "touch" someone with your history.

    There has to be a reason for your pain. Further opinions--with revision specialists-- seem like the best course
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  4. #4
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    Question Pain Pump

    The reason a pain pump into the epidural space is not possible is because the normal spaces through which epidural medication is injected is fused shut. That's why the pain doc would not "touch" someone with your history.

    There has to be a reason for your pain. Further opinions--with revision specialists-- seem like the best course.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  5. #5
    Join Date
    May 2009
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    3,745
    hi janiemc
    welcome to the forum...it is a wonderful and helpful place, but a place no one wants to need...

    i am trying to understand...if they removed rods, does that mean you have no hardware in at all now?
    i have seen doctors who shy away form any patient with an "extensive history," regardless of what that patient needs!

    i have a pain management doctor in NYC, and found a new one in CT, where i moved 3 years ago...being born and raised and lived most of my life in NYC, i am used to that caliber of doctor, though even Manhattan has its disappointments! i guess anywhere can...

    i would strongly urge you to find an SRS scoli surgeon....for a complete evaluation, not necessarily that you want more surgery at this point...maybe you do, i don't know...i do know a scoli patient needs to be followed by a top surgeon!

    if i were you, i'd travel for such a surgeon...i travel 3 hours each way to Manhattan now...and a year ago January i flew 3000 miles to consult with a surgeon at Cedars Sinai...yes, the travel is grueling for anyone with pain...i just took a whole lotta meds, didn't drive a car, (so i didn't have that worry), and did what i had to do...

    in my case, my T42 and L61 curves are causing pain, but it is probably my degenerative disc disease that is now causing even more pain...plus listhesis, hypokyphosis, spinal stenosis, spinal arthritis, etc...for now, we are treating the pain symptoms, as i personally am not ready to be fused to the pelvis...but that's just me...there is a wonderful surgeon in Manhattan who has been following me for about 6 years now...

    i think you need to know what exactly seems to be causing you the most pain...then you will be able to see the options available...

    i hope you can see your way clear to travel to wherever is needed, if it must be...if no one close to you has the answers...

    best of luck
    jess

  6. #6
    Join Date
    Nov 2010
    Posts
    4
    Hi jrnyc. Thanks for your reply. As I said, there is a lot more to my story. I have had over 10 operations on my back. I do have rods. It's sciatica pain. I have traveled over 4 hours to see the last back doctor. He was located in Chapel Hill, NC. He has since moved around Blacksburg, VA which is probably the same distance and will go back there if I have to but as I mentioned travelling that far is very painful. I'd like feedback from anyone who has had the neuro stimulator or pain pump as well as radiofrequency ablation. Have you heard of the Bonati Spine Institute in Florida? I know I will probably have to travel I just want to make the best educated guess as to where to go.

  7. #7
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    May 2009
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    no, haven't heard of that place in FLA...
    i am an east coast NYC girl...i once had a doctor in Manhattan tell me the best docs were in NYC, cause i was considering CA...

    i've had about every injection...epidural, facet block, nerve ablation, sacroiliac joint, etc...that last one gave me 3 weeks of blissful pain free days and nites! the most relief i got from pain with shots is exactly 3 weeks!


    i turned down a doctor who offered a stimulator thing under the skin...i dont want anything under my skin unless i finally have fusion...either T4-pelvis or T11-pelvis, i really need it from T4. However, i do get help with thoracic muscle spasms from BOTOX shots...i get them every 3-4 months, so the surgeons said if i keep getting them, they would do T11-pelvis...since my worst pain is lumbar...

    i have a sciatica that has gotten much worse the last year, after not bothering me much for many years...i have not found anything that has helped it...not shots, not anything...

    have you seen any top Manhattan surgeons, like Boachie, Neuman or Lonner?

    hope you find some answers...

    jess

  8. #8
    Join Date
    Nov 2010
    Posts
    4
    Yes, I have considered NY as my sister-in-law lives in NJ and works in NYC. But again, the travel is so difficult. I have sent an inquiry to Johns Hopkins in MD but appreciate any feedback.

    Did you say you had an ablation? How successful was that? The only area of my back not surgically fused is the sacroiliac joint so there's not much room down there.

  9. #9
    Join Date
    May 2009
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    yes, i have had nerve ablation...depends which nerves are causing pain where...
    they are supposed to test it out while patient is on table, to see what is effective...

    i got a few weeks of relief from ablation...
    i'd try it again, but wouldn't expect much relief for pain in my case...but that is just me...
    perhaps you will have better luck with it...

    one of my doctors, as well as my surgeon, told me that so much of my pain is coming from my discs...there is not much i know of that helps that kind of pain...steroids for a little while, but i had to be weaned down from them...i require too high a dose for relief to stay on them (i know some folks stay on a low dose of steroids for years)

    if i were to travel, i think i'd want the most well known place for doctors, so i wouldn't pick FLA, but that is just my opinion...i am sure some Floridians out there would disagree with me...

    jess

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