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When Do You Stop Talking About Your Surgery?

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  • #16
    Awh, what sweet comments from your husband. It's easier for others to notice our small improvements in the beginning that we do ourselves. Give yourself time; 5 months is just the start of your recovery!!
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

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    • #17
      Hi, Debbe,

      I think it may well be harder to mentally recover than to physically recover. Your body does its thing without much input from your conscious mind, that's the autonomic system at work, like a computer's operating system it is automatic. The subconscious mind now, that you do have a little more control of, even though it takes forever to make it do what you want. That's the system that takes care of your routine tasks, like driving. If you ever wind up at the store you shop in most of the time, instead of the store you wanted to go to that you rarely go to, blame Mr. Subconscious. That's the system that when all is said and done takes over the job of dealing with the scoli surgery when you have dealt with each issue you must deal with as a survivor of scoliosis surgery enough times that your responses become automatic. Turning with the whole spine, for instance, instead of just part of it, to reach a light switch. How many times must that maneuver be done before it is a habit? When you are still in pain you are unable to switch on to automatic, or you may have a compensatory for the pain movement become automatic that would be detrimental to your long term health, like a limp favoring a low back caused pain that wears out a hip or a knee. I would imagine that is why some of us like me benefit from physical therapy to see to it that we recover properly, without putting something else at risk. Looking at it in that light, I'd say you are right that five years to truly mentally process this surgery is more like what I am going to be dealing with.

      Thanks so much, Debbe, for you post, because you got me to analyze the problem I am faced with using what little I know about brain function. I taught myself something in the process!

      Wendy
      Wendy
      Fusion T6 to S2 with Dr. Carlos Bagley,
      Duke Spine Center
      Surgery Date June 21, 2013

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      • #18
        Great stuff here and honest too! Take home messages for me: there is not just one way to do the healing and all of us are different, we need to be honest with the loved ones around us when we need some support and have unshared feelings, pain is a mediator of the experience, talking about it may help some of us to get to a new place.

        Gayle's experience makes me very afraid. I cannot imagine how awful that must have been to break a rod and go through the surgery again. I think about my surgery MANY times a day and I imagine that I will think about it every day for the rest of my life. If I did not at least acknowledge the surgery....I'm not talking about dwelling on it, then I am denying a very big part of myself. Yes, in some ways, I have moved on, but everytime that I look in the mirror and see that huge scar [which I am very proud of and think is beautiful, by the way], there is a part of me that says, "Susan, can you believe that you had that huge surgery?" My incisional hernia is a constant reminder of my surgery. It is ugly and I think that people look at me and wonder why I look pregnant. If I do need a spine surgery revision....who knows how that would set me back.

        Watching Wendy seemingly move so quickly during her writing to better communications with her husband and renewed interest in her art brought tears to my eyes...as did Gayle's honesty about her feelings about her second surgery and all of the uncertainty that it brings with it. Recovery from surgery is not for the weak. We do not give ourselves enough credit for surviving this whole process. And who are our role models for recovery? If we could all get together for an hour most days and reassure each other in person and share experiences, this whole ordeal would be SO much easier! I am on the forum a few days a week for an hour or so and the rest of the time, I negotiate life by myself. Sometimes it's lonely.

        Thanks everyone for sharing your feelings and being so honest as you have helped me so much! I doubt myself and my recovery and worry about my lower spine and cervical pain and wonder about what that will mean in the future. When I told Dr. Hu about my neck, she said, "Oh, I could fix that too if you want" and I wanted to run out of there as fast as I could and hide. The thought of more surgery is so scary.

        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

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        • #19
          Originally posted by golfnut View Post
          WLB1-I think we all have the need to talk about daily issues and aches and pains with someone during the first year. I had several friends from this forum that I actually started corresponding with on a daily basis via email. They were a few months ahead of me with their surgeries and were so helpful and encouraging to me. The recovery was difficult, although I think I had it better than many on this forum. That being said, I still would like to burn the pajamas and jogging suits that I wore during that period. Now, if someone mentions my surgery or has any questions, my face lights up with delight because I am so happy with my results and feel so great. It is still really early in your recovery and you should expect to have a slow and steady improvement for many more months. Although I felt better than I expected at 2 years, I have continued to feel fewer aches after my 2 year anniversary. BTW, I just had to have my 16 year old schnauzer put down 11 days ago. She was such a sweet dog and was instrumental in my recovery. It helps to vent, so take advantage of this forum. We are listening and understand!
          Karen,
          First let me say how sorry I am for the loss of your 16-year-old schnauzer. I have put down 2 dogs 14 years and 12 years and both were my babies. Unfortunately I did not have either in my recovery but can see how they would have been instrumental. It's kind of funny, I have a cat who grew up with my last one Rocky who thinks he is a dog. When I was laid up and on the couch during my recovery he would lay down on the floor right by my side I also want to say to all those recovering.....staying positive is also instrumental. Remember....you needed to do this and you will only get better each day. 19 months post op and feeling good with the grace of God! Best to you all!

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          • #20
            Originally posted by leahdragonfly View Post
            Hi,

            I am finding this a fascinating thread. As many know here I have been through my original surgery in 2010, then broken rods 15 months later followed by a huge revision in Feb 2012. As I approach the 2 year mark of the revision, I still think about the surgery and recovery a lot at times. I do think about my back every day. I have wondered what I can do to stop thinking about it every day. I have wondered the very same thing as WLB--how long does one think about it? I realized long ago, like you, that people who are not on this forum don't really want to hear about it. I think even those who are close to me and empathic thought I should really stop whining about it after 8 weeks. For me, the experience changed me, and I am not sure I will ever stop thinking about it.

            My mom, who never supported me having this surgery and is an utter whacko about my back, never came to see me in the hospital either time. Apparently she feels blamed and hurt because I told her I hated wearing my brace as a teenager. My husband clearly remembers her saying to me at 5 WEEKS POST-OP!!!!!!, "Oh honey, is your back still bothering you?" It was all my husband could do to walk away from that one. My Dad got on her by saying "She had her entire back filleted Mom, of course it still hurts her." Bless his heart.

            Suffering broken rods (which happened at work, so it became a very public event unfortunately) and the subsequent revision was infinitely more traumatic than the original surgery. As I approach my 2-year appointment and x-rays, I am experiencing some of "that dreaded x-ray feeling" as I worry that a hardware compromise could be found. What would I do if I needed another revision? I can't even hardly stand the thought. I know this is not entirely rational, but it is where I am right now. I am not consumed by this worry, but I do have it it the back of my mind. Going through a huge, unexpected revision on one week's notice was really traumatic and difficult.

            I have definitely found, like you, that people don't want to talk about it. I would see their eyes glaze over and shift away if I wanted to talk about it. And I am really a private person who does not like to be in the spotlight or talk about themselves constantly. That's why this forum is great. We have all needed to talk, and when we do, our forum friends are always here.

            I think that most surgeons do not mention the mental aspect of this recovery to their patients. I am a tough person, but I was completely floored by the difficulty and length of this recovery. It would be helpful if surgeons gave some sort of heads up to pts about the mental health aspects of this recovery.

            I am so sorry to hear of your situation, but happy that you are going to get the help you need. We never tire of talking about scoliosis and surgical recovery, so you can vent here all you want. We are always here for each other.
            Gayle, question -- I am 19 months post-op and sorry to hear of your having to have a revision. Please educate me. I was under the impression from my PT that once we were fused we really don't need the rods anymore. Is that true? Did they just remove the hardware? If not, what had to be done?

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            • #21
              I just saw my scoliosis surgeon,I am ten months postoperative. He told me that if the hardware gets too heavy in my back, I could have it removed down the road. He was not specific on any timeframe, but it really does not matter to me, because my stay in the hospital was not the originally planned four to six days, but eleven. Although nobody will talk about it, I believe I was in seriously critical condition. I think my husband does not want to relive the experience. So as many have said, be your eon advocate, I ordered all the reports from the hospital. Yup, I was in critical condition. Anyway, that is not why I started this post.

              When I was not happy with my progress, I would look back and see how far I have come. Doing that and talking to my friends who are supportive is the way I get through the doubts about my progress. My husband did not want me to have the surgery, but was supportive when I decided to do it. He was great during my recovery. I always say that I should rent him out to the disabled.

              The only major problem I am having now is standing. Due to fused vertebrae prior to surgery, which we did not know about, the doctor was not able to give me the lordosis and kyphosis that ordinary people have. My back is very straight. Of course there is another surgery for that also. Yup, nope. I will deal with it, unless I have no choice.

              I don't get to post often, so I am taking this opportunity to wish everyone on the forum happy holidays and a healthy and happy new year.

              Libby

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