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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, 10:22 PM.

  • #2
    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

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    • #3
      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, 10:24 PM.

      Comment


      • #4
        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

        Comment


        • #5
          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

          Comment


          • #6
            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, 02:48 PM.

            Comment


            • #7
              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, 07:34 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."

              Comment


              • #8
                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

                Comment


                • #9
                  Good morning,

                  I was in a similar position for the last several years. It's not an easy decision, however, I committed to it and was fused from T4 to S1 three months ago.

                  I'm 58 years old and have osteopenia/osteoporosis. I was advised by my surgeon that it was the right time as my bone strength was worsening. While I was scared to have the surgery, I was more afraid I'd reach the point of needing it and no longer be a candidate. Once the decision was made, I started daily injections of Tymlos to improve my bone strength. I'll continue Tymlos until March to help with the fusion (total of 2 years).

                  1-I believe the timing of my surgery was right. I was still active and able to do everything I wanted to do, but the pain was increasing and definitely starting to impact my enjoyment. Prior to surgery, I was able to manage the pain by staying active, working out focusing on core strength, and Aleve. The biggest decision on the timing was to do it while still in good health. I truly believe this recovery would have been much more difficult if I was ten years older.

                  2-About the only activity I have been cleared to do is walking. I was able to walk 1 mile about three weeks post surgery. I've "logged" over 130 miles since my surgery and just completed a 5K walk in under one hour, a goal I set prior to my surgery. I've been able to walk over 4 miles without pain. Although I could take long walks/hikes prior to the surgery, pain usually set in by the three mile point. I've recently been cleared for light workouts (nothing more than 20 pounds), but still no bending or twisting.

                  3-I believe I'll be able to do everything I did before, just differently. It's too early to tell, as I won't be cleared until the one year anniversary. My prior activities that I'm determined to continue include downhill skiing, cycling, cross-country skiing, hiking, and running.

                  4-As far as my self esteem, it's also still early to tell. I feel better about the way clothes fit me. However, my abdomen is still tender and somewhat swollen from the first day surgery (ALIF) making some clothes difficult to wear. I've regained 2 inches, and have more of a waistline again. There are the scars, but I'm determined to own them. My family has been amazing, especially my husband. They have learned to give me independence even though they could do it faster, but recognize when they need to step in to help me. I'm a little self conscious about the way I walk. It's slow and deliberate.

                  My biggest challenge has been myself. I've needed to learn to give myself grace, ask for help, and expect less of myself. There have been moments of feeling great accomplishments and moments of extreme frustration. There's even been a few fits of rage and tears.

                  My surgery was done over 3 days, first day through the abdomen, second day was a rest day, and third day through the back. There were no complications other than a spinal fluid leak that was quickly resolved. I was in the hospital for one week. I would have been discharged earlier, but I generally have low blood pressure and kept passing out when they got me up. I honestly had very little pain. I was determined to avoid narcotics, but did agree to an oxy the night of my second surgery and took a low dose of Tramadol at night to help me sleep for about a week. From there I controlled discomfort with Tylenol and lying flat on my back. My doctor started me on Gabapentin prior to the surgery and that has been critical to control the nerves that are now firing. I don't like the fog that medicine causes, so I'm in the process of weaning off of it now.

                  Sitting and abdominal discomfort have been my greatest challenges. I returned to work part-time (desk job) at about 6 weeks and I'm now back full-time...for the most part.

                  Some essentials are slip-on shoes, grabbers, the sock aid, and loose fitting clothing. Oh, and the Tushi (a devise that easily attaches to your toilet and acts like a bidet. Remember, twisting isn't allowed!)

                  All in all, the surgery was far less painful than I was expecting. However, the challenges of daily activities with restrictions (especially bending) have been greater.

                  I hope this helps. Feel free to reach out if you have any questions, and good luck with your decision making. I understand how difficult and emotional that is.

                  Best wishes,

                  Kelly

                  Comment


                  • #10
                    Thank you

                    Thank you Kelly for answering all my questions. I know they were a lot so I really appreciate your detailed answers. Do you mind sharing with me who was your doctor? You can pm me if you prefer. It seems like he/she did a great job.

                    I am going through a lot of testing in preparation for surgery. Once I get a detailed description of the surgery from my surgeon I plan to get another second opinion (which is really like a fourth opinion because I’ve seen many drs in the past years). Except for my surgeon they all think that I should wait until I am much worse to have the surgery but I’m like you, I’d rather recover when I’m stronger and healthier than when I’m miserable. I’m on Tymlos too. Like you, my biggest fear, more than the surgery itself, is needing the surgery and not being able to have it.

                    It gives me great hope to read your post. Despite the difficulties you are doing great!

                    Ana Maria
                    Last edited by Mamichi; 09-28-2022, 09:26 PM.

                    Comment


                    • #11
                      Mamichi,

                      My surgery was done at Mayo Clinic, Rochester, by Dr. Nassr. He has been following my case for approximately 12 years. I trust him and decided to follow his recommendations as to what and when would most likely give me the best results.

                      Don't hesitate to reach out if you have additional questions.

                      Kelly

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