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Thread: Planning for surgery - questions

  1. #1
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    Planning for surgery - questions

    I have been thinking about having surgery for about 2 years. I have seen 4 spine surgeons, and 3 out of the 4 said I could wait. In fact, 2 of them said that my case was not too severe to consider surgery. The dr who recommended surgery says that outcomes are better when the patient is younger and less disabled, and so is recovery, so he recommends that I do it now. I’m 53 and my curves are in the 40s ( t) and 50s ( L). I would have to be fused to the sacrum.

    I have done PT ( regular and schroth) and I’m doing pilates. I am taking Tymlos for my Osteopenia. I have been preparing physically and mentally for surgery, but I’m terrified. It does not help that those 3 drs don?t recommend surgery yet. I worry that I will be making the wrong decision. But I’m tired of the chronic pain and this is not going to get better. The only thing that terrifies me more than surgery is to need it and not be able to have it.

    So, here are my questions, for those of you who have long fusions:
    1. Do you regret the timing of your surgery? Do you think you should have had it later or sooner?
    2. What activities can you do now that you could mot prior to surgery?
    3. What activities you cannot do after surgery that you miss?
    4. How has surgery affected your self-esteem, your relationships with family and friends, and any other aspects of your life?

    I know that surgery is in my future but I want to decide how soon it will be. Thanks!
    Last edited by Mamichi; 07-22-2022 at 09:22 PM.

  2. #2
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    Hi...

    I personally would like to go back in time and not have my first surgeries. While I had an average recovery, I ended up with degeneration below my fusion, eventually requiring more surgery. The revision surgery I had was very successful, and I have no back pain (knock on wood!). With that said, I really hate the loss of flexibility. It's certainly possible that I surgery would have eventually been necessary anyway, but I would have liked to try to avoid it all. You don't mention how high your fusion will start, but I'm guessing it's T3, T4, T10, or T11. If it's T10 or T11, you may not notice the flexibility issue as much as you would if it's T3 or T4. It's very uncomfortable for me to sit on the floor, and it's very difficult for me to get up from being on the ground/floor. I need a chair or stool, and even then, it's difficult because I also have some knee issues.

    I think most people get some improvement in their body image. In my case, my body image is significantly worse, as I have some big ass scars, and I have an incisional hernia on the left side of my abdomen, due to an abdominal wall defect caused by the anterior part of my initial surgeries.

    Before retiring in 2017, I worked at UCSF, in the OrthoSpine group. I don't know what's been going on in recent years, but even back then, they were doing big scoliosis surgeries on people as old as 90. I had my first surgeries in my mid-40's, and my second surgeries in my early 60's. In terms of recovery, my second surgeries were actually easier. While I think it's wise to consider age as one of the variables in your decision, I wouldn't give it much weight.

    Best of luck with your decision.

    Regards,
    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
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    Sep 2020
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    Thanks Linda for your response. To answer your question, my dr says it will be either T9 or T4 to pelvis. He needs more testing to determine that.

    The loss of flexibility gives me great pause, to the point that it is one of the main reasons that I have delayed this surgery. But as time passes by there are more things I cannot do or don’t enjoy doing because of the pain; simple things like sitting at a restaurant have become very uncomfortable. I love traveling but sitting on a plane or a car for hours has become extremely painful. I feel like I’m not living my “still young-ish” years to the fullest. Surgery might not get rid of all the pain but hopefully most.

    I have seen older people get the surgery with good outcomes and that gives me hope. But I also see people saying that they wished they had done it sooner. Thank you for sharing your perspective because it gives me more to think about.
    Last edited by Mamichi; 07-22-2022 at 09:24 PM.

  4. #4
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    It is a very big decision when or if to have surgery. Take your time to make the best decision for you. I really doubt there is a perfect time. Just like having a child , there is just a better time.
    Many sail through with minimal problems but I think everyone should expect some.
    I second some of what Linda said. I would have waited. You mentioned about sitting in a restaurant, I could sit better before. Now it is almost impossible to sit on any hard surface. A car ride of more than 20 minutes makes me want to pull over to stand up for awhile. There is a lot of pressure with being fused to the pelvis.
    Ask all of your questions, many here will answer with a patient perspective.
    Welcome and good luck.
    T10-pelvis fusion 12/08
    C5,6,7 fusion 9/10
    T2--T10 fusion 2/11
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16
    Broken neck 9/28/2018
    Emergency surgery posterior fusion C4- T3
    Repeated 11/2018 because rods pulled apart added T2 fusion
    Removal of partial right thoracic hardware 1/2020
    Removal and replacement of C4-T10 hardware with C7 and T 1
    Osteotomy

  5. #5
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    Quote Originally Posted by jackieg412 View Post
    It is a very big decision when or if to have surgery. Take your time to make the best decision for you. I really doubt there is a perfect time. Just like having a child , there is just a better time.
    Many sail through with minimal problems but I think everyone should expect some.
    I second some of what Linda said. I would have waited. You mentioned about sitting in a restaurant, I could sit better before. Now it is almost impossible to sit on any hard surface. A car ride of more than 20 minutes makes me want to pull over to stand up for awhile. There is a lot of pressure with being fused to the pelvis.
    Ask all of your questions, many here will answer with a patient perspective.
    Welcome and good luck.
    Well said Jackie.

    Also, in regard to sitting in a restaurant, I would try bringing along a pillow. I've had probably a dozen different shapes and sizes of pillows that I've used for neck and back pain over the years. They can make a lot of difference.

    --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

  6. #6
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    Sep 2020
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    Thank you Jackie. This is helpful. I’ve found more people say I wish I had done it sooner? than the other way around, but it may be that they are not fused to the pelvis, or it may be that I have selective attention and want to find more reasons to have the surgery now. I am so tired but I know that I am not in excruciating pain and I might be worse after surgery. I?m mostly tired of the chronic pain and afraid of what the future holds if I don’t do something about it. And I’m not going to lie, as my curve progresses and becomes more visible my self-esteem is also taking a hit.
    Last edited by Mamichi; 07-24-2022 at 01:48 PM.

  7. #7
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    There is no consensus on having fusion in any case other than adolescents with large, progressive thoracic curves.

    Adults are really at sea on this. The point is to never beat yourself up over your decision.

    Best regards.
    Last edited by Pooka1; 07-24-2022 at 06:34 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."

  8. #8
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    Quote Originally Posted by Pooka1 View Post
    The point is to never beat yourself up over your decision.
    Hindsight is 20/20. It's hard not to wonder what life would have held for each of us, if we had done something different.
    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

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