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Thread: Surgery should be last resort

  1. #1
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    Surgery should be last resort

    I feel this surgery should only be considered as a last resort; i.e., if you are truly hunched over and disabled from Scoliosis. If you absolutely have to do it, get yourself a good anesthesiologist to attend you with adequate pain medications while in hospital. If you have good pain management, you will be OK during your hospital stay.

    I understand that for some people, surgery has to be performed and is the means toward a more normal life. This posting is intended for those with Scoliosis curves that go could either way - those that hang in the balance, so to speak.

    Now here is what I have to say. If you will find it upsetting to read a painfully honest account of what it has been like for me (and also for others I know) to age with the surgery, please stop reading.

    After suffering silently in pain and immobility from my scoliosis surgery for over 25 years, I am finally going to stand up and say what I really think about the surgery so that I can help others avoid what was my disabling and life-altering choice. My post might be unpopular, as speaking up against medical opinion always is, but it is only right that I speak honestly so that I can save other young people from making the choice I did. I hope others will respect my right to share what it is like for me to live and grow old with this surgery. I only wish someone had been honest with me about it when I was younger.

    I was a normal, healthy 20 year old college student. I had been braced with a Milwaukee brace as a teenager but it didn't work, and so, before I aged-out of my parents medical insurance, I thought I would just "take care" of my scoliosis problem and have the surgery. My curve was about 60/40 degrees, getting a few degrees worse every year. Unfortunately, the people I had met that had had the surgery never told me what it would REALLY be like to live with a fused spine. They were afraid to speak honestly to me. And of course the surgeon was only too happy to perform the Harrington rod operation and get his huge fee. He told me what I understand spinal surgeons are still (sadly) saying today: "You'll be able to do everything you did before the surgery except for a somersault or a contact sport." What utter and dishonest nonsense!

    The pain after the surgery was nothing close to the pain I had from the scoliosis. The surgeon also took bone from my hip instead of using a cadaver and that added to it. These days pain medications are better, so now this doesn't have to be a problem.

    But the worst sensation was a few days later when I was transferred back to my room and realized I couldn't bend my spine. At all. I was horrified. No one had ever alluded to this. It felt like I was wearing my brace, but INSIDE my body. I could feel the metal, and it was a horrible feeling.

    I never got used to it. For 25 years I have longed to arch my back, longed to stretch, long to hunch my back when I sit. The human spine is meant to bend; to fuse almost the entire thing is to permanently disable and alter someone. And muscles don't forget; mine want to stretch like they were meant to. Also, as you age your bones become stiffer; years of having a fused spine and having to compensate for the fusion take their toll on your hips.

    I have been on opiate pain medication since my surgery; on that day, I was turned into a chronic pain patient. In an effort to relieve my pain and stiffness, I did have the hardware removed years ago, but although I'm glad I did it, it didn't give me any more flexibility.

    I am the voice of (some) scoliosis patients who are aging with the surgery. I dare to speak out against this surgery and the surgeons who continue to perform this procedure, even in cases like mine that are not that bad. I hope to save others with moderate scoliosis from a choice that should be a last resort, hope to educate parents from not choosing this surgery for their children unless they absolutely have to.

  2. #2
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    Quote Originally Posted by Cornerthree View Post
    I feel this surgery should only be considered as a last resort; i.e., if you are truly hunched over and disabled from Scoliosis. If you absolutely have to do it, get yourself a good anesthesiologist to attend you with adequate pain medications while in hospital. If you have good pain management, you will be OK during your hospital stay.

    I understand that for some people, surgery has to be performed and is the means toward a more normal life. This posting is intended for those with Scoliosis curves that go could either way - those that hang in the balance, so to speak.
    Hi Cornerthree and welcome. Everyone's testimonial is valuable. Thanks so much for posting this. If there is anyone who disagrees that surgery is a last resort I haven't met them or even heard them say anything opposite that. It would be irrational to hold that surgery is NOT a last resort. If nobody else, the cost of it guarantees that the insurance companies would not be paying for it if it wasn't a last resort. You are pushing on an open door here. :-)

    Now here is what I have to say. If you will find it upsetting to read a painfully honest account of what it has been like for me (and also for others I know) to age with the surgery, please stop reading.
    Sorry I am not following. Why would anyone object to your being honest? Just like people should not believe in fairy stories just because they make them feel good, equally people should not avoid reality even if upsetting. Please feel you can post any first hand experience you have. It will be a service to the community here.

    After suffering silently in pain and immobility from my scoliosis surgery for over 25 years, I am finally going to stand up and say what I really think about the surgery so that I can help others avoid what was my disabling and life-altering choice. My post might be unpopular, as speaking up against medical opinion always is, but it is only right that I speak honestly so that I can save other young people from making the choice I did. I hope others will respect my right to share what it is like for me to live and grow old with this surgery. I only wish someone had been honest with me about it when I was younger.
    Are you saying some surgeon lied to you? How would you sort that out form what you happen to remember in a very stressful time of your life?

    I was a normal, healthy 20 year old college student. I had been braced with a Milwaukee brace as a teenager but it didn't work, and so, before I aged-out of my parents medical insurance, I thought I would just "take care" of my scoliosis problem and have the surgery. My curve was about 60/40 degrees, getting a few degrees worse every year.
    That falls within the indications for surgery as far as I know. Are you saying it doesn't?

    Unfortunately, the people I had met that had had the surgery never told me what it would REALLY be like to live with a fused spine. They were afraid to speak honestly to me.
    Are you saying everyone you know who had this surgery had a bad outcome and conspired to hide that from you? Didn't even a single person have a good outcome? Did you know that most people have a good outcome because most have a thoracic curve that is amenable to treatment both with the old Harrington rods and the newer instrumentation?

    And of course the surgeon was only too happy to perform the Harrington rod operation and get his huge fee. He told me what I understand spinal surgeons are still (sadly) saying today: "You'll be able to do everything you did before the surgery except for a somersault or a contact sport." What utter and dishonest nonsense!
    Both my daughters are fused. They have their normal life back. That is honest FACT. Do you suspect I am lying? And they are not alone. Of course surgeons take patients as they come and I wonder if you considered that the bad outcomes are due to patient co-morbidity as opposed to surgical error. That's what that data look like as far as I know. Did you have other problems?

    The pain after the surgery was nothing close to the pain I had from the scoliosis. The surgeon also took bone from my hip instead of using a cadaver and that added to it. These days pain medications are better, so now this doesn't have to be a problem.
    I'm sorry for your pain. Now taking bone from the iliac crest is not a good idea for kids or young folks in my opinion. I was prepared to refuse it if the surgeon suggested it. There are known issues of long-term pain that is often far worse than any back pain after surgery over the years. So back pain is solved but hip pain starts. I am very sorry that happened to you.

    But the worst sensation was a few days later when I was transferred back to my room and realized I couldn't bend my spine. At all. I was horrified. No one had ever alluded to this. It felt like I was wearing my brace, but INSIDE my body. I could feel the metal, and it was a horrible feeling.
    I'm sorry. I am sure that was horrible. But you can't compare that to normal because normal is off the table. My daughters will never see normal whether they had the surgery or not. It's a game of cutting losses. You have to compare how you are to how bad you would be if you didn't have the surgery. Also, have you considered a revision with newer instrumentation? That might solve all your problems with the H rod. Of course I have no idea because I am not a surgeon but I know people are helped when they have H-rods revised.

    I never got used to it. For 25 years I have longed to arch my back, longed to stretch, long to hunch my back when I sit. The human spine is meant to bend; to fuse almost the entire thing is to permanently disable and alter someone. And muscles don't forget; mine want to stretch like they were meant to. Also, as you age your bones become stiffer; years of having a fused spine and having to compensate for the fusion take their toll on your hips.
    I see that point. I am sorry you are dealing with that. But again, might you be worse without the surgery? At least one of my daughters would be dead without surgery... curve moved 5* a month for the entire observation period.

    I have been on opiate pain medication since my surgery; on that day, I was turned into a chronic pain patient. In an effort to relieve my pain and stiffness, I did have the hardware removed years ago, but although I'm glad I did it, it didn't give me any more flexibility.
    Have you investigated revision surgery?

    I am the voice of (some) scoliosis patients who are aging with the surgery. I dare to speak out against this surgery and the surgeons who continue to perform this procedure, even in cases like mine that are not that bad. I hope to save others with moderate scoliosis from a choice that should be a last resort, hope to educate parents from not choosing this surgery for their children unless they absolutely have to.
    Rest assured no parent chooses surgery unless they absolutely have to do so. Please take that load off your mind. Some H rod patients certainly have trouble but that is not really relevant to parents today making the surgical decision with the new segmental instrumentation, especially for thoracic curves. Now other curve types are still problematic and surgery is dicier in those cases as far as I know. Those are not clear calls like large thoracic curves are.

    Thanks for posting and I hope you continue to post. All testimonials are important.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #3
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    hi corner
    personally, i think you have a right to share your experience
    with scoliosis surgery on a forum devoted to scoliosis...
    i am so sorry for what you went thru...
    unfortunately, i am not surprised that doctors were not honest with
    you....in medicine overall, i think that was far too common with many
    doctors in many different specialties...though i do believe it is getting
    better as the years pass....

    i am so sorry for all the years you have lived in pain...
    i do believe that people have surgery as an absolute last resort...
    anyone who gives it any thought will only turn to surgery (for
    any medical problem) when all else fails....

    jess

  4. #4
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    Welcome Cornerthree

    Thank you for your post. I can empathize with everything you feel, as I feel the same way. Although I am only 18 months post op, I have regretted having this surgery for almost every day of those 18 months. I consider myself very fortunate to have lived over half of my life with an unfused spine. I agree that the doctors fail to tell us the reality of what we will feel like, and that many of the people on this forum only discuss the positive outcomes, and not the negative. I have asked myself many times why I am in the minority? Why do I feel the hardware, and also feel like I am wearing an internal straight jacket, when everyone else says how wonderful they feel? I think there are more people like us who are less than thrilled with their surgery. They just are not posting. I correspond with 3 other forum members who continue to have issues. You are not alone.
    I agree that this surgery should be a last resort. Compromised cardiac and lung function are certainly indicators that surgery is not optional. But, if that is not the case, it is some times easier to deal with the known vs. the unknown. Although I had pain pre-op, it was familiar, and I knew how to deal with it. My body now, feels like an alien to me, and I don't know how to adapt. My muscles are unable to adapt, and are so tight, I feel like I am being squeezed in half. I am waiting to hit my 2 year mark, to possibly have the hardware removed.
    You say you had your hardware removed. I know the flexibility will never return, but did you at least stop "feeling" the hardware? Did your muscles ever stop feeling like they needed to stretch? I hope you were able to get a little relief. I am sorry you have lived for so many years feeling this way. Again, thank you for sharing your story. It is important to present all points of view.
    Lori in PA, 52 yrs. old
    T54/L72
    Surgery 6/7/11, T3-S1, all posterior, with pelvic anchors
    Gained 2 inches!
    Dr. Boachie, HSS, NYC
    12/10/13 Hardware Removal for infection
    Lost 2", gained PJK!

  5. #5
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    Hi,
    I think very few of us would have undertaken this surgery of this magnitude as a first resort. Loss of flexibility is a given if we are essentially making the vertebrae immobile through fusion. The amount of flexibility loss varies based on the levels fused.
    Disk degenration for the remaining disks is also expected because they are compensating for the fused disks. The question is how long do they last and is there anything that we can do to preserve the remaining disks for as long as possible.
    I am 4 months post op and I went into this surgery with my eyes wide open. My pain was getting bad and my quality of life had become bad enough that I was willing to consider the surgery with the hope that it wold improve post surgery. So far things are moving in the right direction.
    None of us chose to have this disease and we just make the best of our situation given the medical facts.
    I for one am glad to see stories of success (relative) and gives me hope that I can lead a reasonably good number of years without incapacitating pain and drug dependence.
    I am perfectly willing to lose some flexibility and put up with numbness and itching and muscle pulling for it.
    Congenital Scoliosis and Kyphosis
    Diagnosis at Age 42, Main Thoracolumbar curve 72 deg
    Surgery on Aug 15, 2012
    Fused T4 to L4, 2 SPOs

  6. #6
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    I am not often perplexed but I am perplexed that anyone could think surgery should not be the last resort. I seriously doubt anyone thinks that. Maybe I need to get out more.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #7
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    Thanks for your honesty. I am considering having surgery, my situation and age are different that yours. My heart goes out to you as it sounds like you have suffered for so long. Like others, I would recommend that you see a VERY GOOD SRS revision surgeon for another opinion.

    You said that your curves...I think were 60/40 at 20 and changing 3 degrees a year? And that was 20 something years ago. So, right now, if you didn't have the surgery, you would probably be collapsed physically in a wheelchair with pain meds also. I'm not minimizing your pain and disability, please do not think that.

    I have also dealt with anger and depression in counseling and I hope that you are doing that or considering it.

    I wish you the best of luck in dealing with your back. Life has dealt you a bad hand, but somehow, I think that there has to be some revision surgeon [Linda would know where in your area], that could help you.

    I'll be thinking of you. Susan
    Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
    2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw
    2021: Removal T1 screw & rod

  8. #8
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    Hi Cornerthree,

    I totally get what you are saying, and I want to reinforce it. I am not in excruciating pain and I think most people would view my surgery as successful. Yet, I still question it. Part of that is my personality, I know. But in my case I was not in pain to any great degree before surgery, so life after surgery is just more painful. It just is. I was told by one surgeon I would recover in about three months. Ha. I was not even off pain meds then. Another one told me I wouldn't be that effected by the loss of flexibility because my spine was already so stiff. That's ridiculous.

    I have told other forum members that I feel like I am voluntarily and permanently disabled. And that's with a good outcome!

    I was pretty much as informed as you can get going into this. But I made the decision because doctors kept telling me to do it while I was younger. I would tend to disagree with that now. I would say hold out as long as you possibly can. That way you'll have fewer years to live with the fusion -- and more years to live with a flexible spine.

    Of course, I do agree with what everyone is saying about we have to consider what we would be like without the surgery. I had an 80 degree curve at age 40, progressing 2-3 degrees a year. So my pain-free days were numbered, for sure. I often wonder if I would be happier with the outcome if I had waited until I was in excruciating pain to have the surgery. I have to think so.

    That said, it is what it is and I have to live with it. So, I try to focus on the positives--like my awesome posture, nice waistline (at least in the back), and likelihood I will never be hunched over as I age. Also, I do have the surgery behind me, so there is not that fear of the unknown hanging over my head. I would like to think that I am a stronger, more compassionate person for having gone through this, as well. For instance, I no longer avert my eyes when I see someone in a wheelchair at the grocery store. I ask if I can reach something for them. I know there are many times when I need someone to reach something low for me.

    Thank you for posting. I would have wanted to read this before my surgery.

    Evelyn
    age 48
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
    Not "confused" anymore, but don't know how to change my username.

  9. #9
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    Hi Evelyn,
    Everyone's experience and expectations are different, but I think picking the time for surgery is also a trade-off. After a certain age, it would be hard to get a good correction because of our bones becoming stiff.
    I also believe beyond a certain curvature, the number of surgeons having the courage to operate would also go down. After all surgeons are also human.
    That being said, I respect your opinion that you would have waited longer, it is a very personal decision and very hard to generalize.
    Congenital Scoliosis and Kyphosis
    Diagnosis at Age 42, Main Thoracolumbar curve 72 deg
    Surgery on Aug 15, 2012
    Fused T4 to L4, 2 SPOs

  10. #10
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    I hope that surgeons, when advising folks about the advantages and disadvantages of doing surgery sooner rather than later address the issue of length of fusion and if it likely will change upon waiting. There are at least two surgeons who have talked about this and so I am guessing there are many more. If you scan the fusion lengths of younger people versus older people, there is an alarming trend of older people needed longer fusions ON AVERAGE. If generally true of the whole population that should make no sense whatsoever UNLESS waiting structuralizes formerly compensatory curves. If/when this happens, the stakes could not be higher than in the lumbar. Most AIS curves (which are most curves full stop within IS) are thorasic. Yet we see so many older patients with fusions involving their lumbar. Before the present instrumentation was available, it may have made sense to wait to fuse a T curve but given the possibility of losing the lumbar when it could have been avoided, it doesn't seem to make sense now.

    In the extreme, we have that case on Dr. Hey's blog where a woman had a structural T curve (30*) and a compensatory L curve (18*) at maturity and the L curve collapsed while the T curve remained at 30*. Presumably, she will lose her lumbar and furthermore she was destined to do so because no surgeon could ethically fuse a 30*. Better data is sorely needed to determine what the surgery threshold should actually be on T curves so as to avoid lumbar involvement later in life.

    In Cornerthree's case, maybe one silver lining is that his lumbar was saved which he might view as extremely important given his comments about lack of flexibility through the thorax. Had he not had the surgery, he might have needed fusion to pelvis by now, who knows. I'm just saying the testimonials seem to present that as a distinct possibility though every case is different. Hopefully he can get a revision or at least some help from a pain specialist. People should not be left in pain like that. Life is so unfair.
    Last edited by Pooka1; 12-15-2012 at 08:40 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  11. #11
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    Quote Originally Posted by Cornerthree View Post
    but a site like this really should be about listening and support, not about reading stuff into things and inappropriate, if well-meant, responses.
    I'm sorry you didn't like some responses you received. The other forum where you posted these sentiments is probably better suited to your needs. That seems like more straight support even if it requires occasional subordination of factual material to maintain the supportive tone. There is somewhat less policing of counterfactual material on the other forum although they have some very knowledgeable people who are capable. Also, in keeping with the more factual stance, we have a research section here although unfortunately it is usually choked with folk science and pseudoscience as would be expected with a predominantly lay membership. Patients would be advised to avoid that section in my opinion... the blind leading the blind leading the naked. This forum supports also but does not subordinate the factual material. Folks looking only for support are better off on the other forum in my opinion.

    Good luck.
    Last edited by Pooka1; 12-15-2012 at 09:10 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  12. #12
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    Sorry, I meant no disrespect. I will erase my post in the event that you are concerned for your privacy.
    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

  13. #13
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    Cornerthree,

    I just want to mention that after reading Linda's posts for literally years, I really think she was trying to be helpful. She may have made some assumptions that turned out to be untrue. But given her vast experience, so probably associated some of your issues with those commonly experienced by other people. If you keep reading her posts, you will see that she is a straight-shooter who usually is very helpful to most.

    I hope that you will continue to post. I think what you have to say is very valuable, and we could use your perspective here.

    Best,
    Evelyn
    age 48
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
    Not "confused" anymore, but don't know how to change my username.

  14. #14
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    HI cornerthree,
    I for one am happy that you have brought up this discussion. All of us are working through this the best that we can. Some get along easier then others,but you have addressed an issue that is complex. I AM HAPPY THAT YOU DID!

  15. #15
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    Quote Originally Posted by Confusedmom View Post
    Cornerthree,

    I just want to mention that after reading Linda's posts for literally years, I really think she was trying to be helpful. She may have made some assumptions that turned out to be untrue. But given her vast experience, so probably associated some of your issues with those commonly experienced by other people. If you keep reading her posts, you will see that she is a straight-shooter who usually is very helpful to most.

    I hope that you will continue to post. I think what you have to say is very valuable, and we could use your perspective here.

    Best,
    Evelyn
    I agree with these comments about our moderator. She not only has personal experience with scoliosis but works in this field. She is the person I most defer to here because I recognize her wealth of knowledge on the ground in spine research. People who want the straight dope love her. People who want something else may or may not like her. People pushing counterfactual material almost certainly will not like her (not talking about Cornerthree here... definitely talking about certain others though). People have many different reasons for accessing fora like this and we can't always assume everyone wants the facts. For example, there are several counterfactual statements on the OP's thread on the other forum that will stand. That makes my skin crawl for patients.

    Again with NO reference to Cornerthree, we see the phenomenon that "He who tells the truth is driven out of nine villages." People do NOT necessarily want facts and I have had to learn that lesson myself. I still find it jaw-dropping, though.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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