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Thread: Avoiding scoliosis revision surgery

  1. #1
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    Avoiding scoliosis revision surgery

    Hi Everyone:

    Like many others, I have severe Degenerative Disc Disease below my fusion. I was fused T2 – L3 in 1987 with Harrington Rods and Luque wires. My surgeon made a stupid mistake and put the rods on too tight, breaking my top vertebrae. Two weeks later the entire surgery had to be redone. I was left in chronic pain. Ten years later, in 1997, I had all my hardware removed, which was a good choice for me. My fusion is stable, and I have little, if any, flatback.

    Two years ago, when I turned 46, the chronic pain in what I assumed was my hips, was diagnosed as lumbar DDD, stenosis, facet hypertrophy, disc bulge, and bone spurs. Since I’m in a MediCal system, treatment has been hard to get. In a year with a pain management practice/physiatry, I’ve only had one epidural, and only the diagnostic portion of a radio ablation treatment. The only Scoliosis surgeon they sent me to was an old guy, not experienced in revision surgery, who told me to “avoid revision surgery as long as possible.” He didn’t even have to tell me that, because I already intended to avoid it.

    I want to outrun revision surgery through death. At the very least I want to put it off. I would like to hear from others who are also trying to avoid it. What spinal interventions/day surgeries have you tried for the pain? What less invasive forms of surgery have been offered to you? I am not interested in seeing Scoliosis surgeons, as most of them will want to fuse me to the sacrum. This is the easiest thing for them. But they don’t have to live with the extreme limited mobility, or have problems wiping themselves, or getting into a car, or taking a bath or putting on shoes. I live alone; so all this is doubly difficult.

    I am NOT putting down revision surgery, but for me it’s not the right choice. I’m not looking for a permanent fix, just some relief. I have always HATED being fused, and I refuse to have what little spinal movement I have left taken away. I have done much research on the outcomes from fusion to the sacrum surgery, and it seems about half the people are happy, and half are devastated and still in pain. Even the moderator of this forum, (and I appreciated her honesty) commented that although she was glad she had it done, that it was a significant loss of flexibility to have revision surgery.

    I would like to hear from anyone who has had Scoliosis surgery and then had ANY surgical treatment other than fusion to the sacrum. Artificial discs, laminectomy, flexible fusion, anything. Yes, these treatments all make the lower vertebrae unstable, but I’m willing to take that risk.

    There are many people who read this forum, but few who post. If you have had an artificial disc, or anything else done, PLEASE write in and let me know where!

    I will be approaching some spinal neurosurgeons/researchers in Northern California, where I live, as to whether any of them are willing to operate on me with anything other than fusion. If I can’t find any, I’ll go out of state.

    Thank you.
    Last edited by Tableone; 07-12-2014 at 04:51 PM.
    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.

  2. #2
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    Update;

    I am in touch with one lady from this site who has had a laminectomy done after Scoliosis surgery and my research continues into options other than being fused to the sacrum. I have been in touch with some spinal research neurosurgeons, which has been interesting. Again, if anyone else who has had Scoliosis surgery and who has been offered any minimally invasive procedures such as laminectomy, laminotomy, etc., please write in. I will keep everyone posted.

    thank you,

  3. #3
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    Quote Originally Posted by Tableone View Post

    I am not interested in seeing Scoliosis surgeons, as most of them will want to fuse me to the sacrum. This is the easiest thing for them. But they don’t have to live with the extreme limited mobility, or have problems wiping themselves, or getting into a car, or taking a bath or putting on shoes. I live alone; so all this is doubly difficult.
    Hi Tableone,

    I do not belong to the category of people you're looking for and I am not trying to change your mind. I am very sorry about your experiences and hope that you'll find some relief, but I want to comment on the quote above because many other people are reading this. I am fused to the sacrum and I do not live with "extreme limited mobility". I don't have any problems wiping myself, getting in a car, taking bath, putting on shoes etc. I somewhat modified my way of doing certain things, but I can do everything I need to do without assistance from other people. For me, reducing my pain to almost none, being able to walk and stand for hours and look normal, was well worth losing some mobility. Meeting Dr. Serena Hu was one of the best things that happened in my life and I will be always grateful for what she did for me.

    It is unfortunate that your first scoliosis surgeon put the rods too tight and even the best ones make mistakes... but it doesn't mean that all scoliosis surgeries and revisions are doomed for failure. Again, I am not trying to change your mind, but I am writing this mainly for people who might be reading this thread and thinking that fusion to sacrum means the end of the world.

    I hope you'll find some relief!
    Last edited by Irina; 07-19-2014 at 06:03 PM.
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  4. #4
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    I would also like to avoid any more fusions. Good luck.

  5. #5
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    Quote Originally Posted by Irina View Post
    Hi Tableone,

    I do not belong to the category of people you're looking for and I am not trying to change your mind. I am very sorry about your experiences and hope that you'll find some relief, but I want to comment on the quote above because many other people are reading this. I am fused to the sacrum and I do not live with "extreme limited mobility". I don't have any problems wiping myself, getting in a car, taking bath, putting on shoes etc. I somewhat modified my way of doing certain things, but I can do everything I need to do without assistance from other people. For me, reducing my pain to almost none, being able to walk and stand for hours and look normal, was well worth losing some mobility. Meeting Dr. Serena Hu was one of the best things that happened in my life and I will be always grateful for what she did for me.

    It is unfortunate that your first scoliosis surgeon put the rods too tight and even the best ones make mistakes... but it doesn't mean that all scoliosis surgeries and revisions are doomed for failure. Again, I am not trying to change your mind, but I am writing this mainly for people who might be reading this thread and thinking that fusion to sacrum means the end of the world.

    I hope you'll find some relief!

    Can you get down and sit on the floor?


    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  6. #6
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    Quote Originally Posted by dixiesmommie View Post
    I am able to sit on the floor. I have difficulty getting back up. I need to hold onto something or someone to get back up. Since I have lost drastic range of motion, I lost whatever the motion was that allowed me to pop right back up to a standing position on my own in the past.

    It's not the best thing I can ever do I might add. I have some pain issues and getting down low to the ground does aggravate whatever is going on.
    Any advice on getting down there?
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  7. #7
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    I can get down and sit on a floor and getting up is not a problem. I need to lean my back against a wall or something to be comfortable. Otherwise, I feel like I am falling backwards. To get on the floor, I first go down on my knees, then on all four, support myself with right hand and turn my body to the right, get on my right hip, extend my legs forward, turn again into a sitting position and wolaa. Opposite order for getting up.

    I don't have small children and didn't have a need to sit on the floor before the surgery, but can do it if need be. I still prefer to sit on a chair though. The instance when I need to be on the floor is in a gym, when I do some exercises on my back, push ups, planks etc. I am not very graceful while getting down, but I don't care.
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  8. #8
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    illinois
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    I can also get to the floor,very much like Irena said. If I am playing with my small grandchildren I stay on my knees as long as possible. I just get down and back up often as I can't stay like that too long.I am able to just stand back up without pulling on anything. I do have a complete spinal fusion to s1. I can not sit there for any length of time but I can stay on my knees for awhile.

  9. #9
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    Thank you both for the advice. I am hoping to get custody of my 7 month old granddaughter soon and will need to get down on the floor.

    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  10. #10
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    Oct 2010
    Location
    Bend, Oregon
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    I agree with the ladies above-I have no issues doing any of those things, even with a long fusion and pelvic fixation. I still can snow ski and mountain bike. I paint my toenails. (Even with flatback syndrome and broken and/or hardware, due to an inexperienced surgeon.) I can easily get on the floor and sit and get back up. I drop to one knee and fold the other leg in and then drop to the floor. It is most comfortable to sit cross-legged or with both legs off to one side. I do have issues sitting with my legs straight out, where it feels like I will tip backwards. My biggest issue is draining a soda pop can to the last drop, not being able to bend backwards, which I don't, and SHOULDN'T, do very often!

    I hope you find what you are looking for. We are all indeed different people with different outlooks. What works for one person may not work for another. Everything depends on how much pain we are willing to deal with versus what we are willing to do to maybe live a better quality of life. I truly understand not wanting to do surgery. I put my initial fusion off for 30 years after the first recommendation back in 1980. But in my experience, my pelvic fixation has done nothing to stop me from living a better life. But again, if you hate your fusion, you are obviously in a different scenario. Only you can decide what is best for you. I wish you the best in your search!
    Jenee'-52
    Bend, Oregon

    Braced 3 years in high school
    Lumbar 70'+ Thoracic 70'+
    I had 3" shrinkage in 6 months...

    Surgery Jan 10, 2011
    9 hours
    T3 to S1 with pelvic fixation
    Both curves now 35'

    Possible revison for Flatback Syndrome
    Non-fusion
    Loose/broken hardware-awaiting CT results

    Here is the link to my before and after pics..
    http://www.scoliosis.org/forum/showt......&highlight=

  11. #11
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    I'm sincerely glad to hear these successful fused to the sacrum stories. Maybe those who posted on this thread could start another thread to help others getting sacrum surgery. It certainly seems like there is a need and many people having this surgery. Now:

    I have now connected with two patients who have had successful discectomy and/or laminectomy below their Scoliosis fusions for treatment of Degenerative Disc Disease, and I know there are many more, which I'm connecting with on other sites. Thank you
    Last edited by Tableone; 07-26-2014 at 10:07 AM.

  12. #12
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    Jul 2014
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    I am having to make that decision. I am in pain all the time. Can walk or stand up very long. I live in S.C., and I am 56 yrs. old. I had the Harrington rod in 1979. I finally went to the spine institute in Charleston, SC 2 weeks ago and was told I had flat back. He said he doubted shots or PT would help, surgery the only option. He did not push me at all. I liked his honesty. What he wrote down was this: Flat back with spondylolisthesis. Surgery is the pedicle subtraction osteotomy. Fusion anterior @ L5/s. Fusion from T 12-ileum. And remove old hardware. I have spelled this the best I could from his notes.

  13. #13
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    Update

    Well, I am finally seeing some decent surgeons since leaving my lousy managed health care plan they made me be in when I was on MediCaid/Medi-Cal. Now that I'm in independent MediCare, I can go wherever I want. I've been reaching surgeons by fax and bypassing office staff so I can get a direct answer from the surgeons as to whether they will evaluate me for surgeries other than fusion to sacrum. I have been told twice that I do not have more than a mild flatback, which is good. Thank God. But, my pain is unbearable. I cry several times a day from it. Have been asked to get some more spinal catheter procedures done to try to determine where the pain is coming from. I have three types of pain. So far, I'm sticking to medical schools.

  14. #14
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    Location
    Dubuque, Iowa
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    I can empathize

    I have not been around here for a very long time, I promised my boyfriend that I would stay away because reading about some peoples issues with their fusions was depressing me more. But I came back around hoping to find some light at the end of the tunnel. I am fused T-4 to sacrum and am miserable, the surgery saved my life but at many costs, so I cannot say that I am unhappy that I had it done, I needed it. I'm glad to hear that some of you can do EVERYTHING you used to, good for you....reading that should make me feel better but it doesn't, it actually makes me bitter as I'm not one of the lucky ones, just wanted to let you know Tableone, that you are not alone....I also hate being fused. Sorry to be a downer, I wish you luck with anything you can do to lessen the misery.
    Spring
    42 yrs old
    Milwaukee braced 1983 to 1989
    was told my curves would never progress
    at 19yrs old 1991, T30-L38
    2010, T38-L56--progression in one year 2011, T40-L67
    new diagnosis-kyphoscoliosis, DDD, Arthritis, Osteoporosis, 73 degree Kyphosis
    Surgery 1-09-12....10 hrs all posterior T4-sacrum & 2 cages
    Dr. Lenke-St. Louis Mo.
    Surgery to clean out infection 2-10-12
    Revision for broken rods 1-23-14

  15. #15
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    So sorry to hear this

    Hi Spring:

    My heart went out to you when I read your post. I appreciate your honesty. Your honesty will help other people.

    I am so sorry that you had to have the fusion to sacrum surgery, and that it has been so hard for you. I am glad at least that you have the companionship of a partner. Again, I appreciate your honesty and wish I was reading that you were doing great. The fusion to the sacrum surgery is very, very major that's for sure. I'm still trying to avoid it, but I am in awful, relentless achy bone pain.

    If you ever feel so inclined, it would help me to hear about how it has effected you physically and the limitations. The surgeons don't tell us the truth about Scoliosis surgeries because they have not had their backs sliced open and fused. So we have to share with each other.

    Hang in there.

    T1

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