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  • Your opinions please

    Hi,

    I have now had two opinions and have been told by both doctors that I will need surgery. I also found out that so long as I work full-time for three months then insurance will cover me for the surgery - so that is good news.

    Here's my predicament. My mind keeps going back and forth not knowing what the heck to do. First of all I am not in severe pain, I just have an achy pain from time to time. I am 42 with a 76 degree lower lumbar curvature and an upper thoracic compensatory curve of 40 degrees. I am quite fit and practice yoga every day. If I have surgery I will definitely be operated from T9 to the sacrum - maybe even more - the doc' won't know for sure till I do some more tests prior to surgery. However, I am a single mom to two wonderful little boys aged 5 and 7 - my boys need me very much. Their father is not a bad man, BUT - he doesn't have a nurturing bone in his body. Right now the kids stay overnight one night a week with him and his girlfriend - and for one night that is fine. If I have surgery my mother will help out a lot and so will some of my friends - BUT - those little boys need me in many many ways. I'm wondering - before I ask the doctor - what all of you think if I held off on having the surgery for a couple more years when my kids would be much more able for this than right now. Do you think it would be detrimental to hold off in your opinions and in your experience?

    I hate having such a major surgery when I'm not even in bad pain. I also hate having surgery in the fear of what if...I know surery is pretty safe these days - BUT what if something goes wrong - my kids have no one else capable of taking care of them full-time. They need me to raise them into men. God I hate being in this situation - and I'm sorry to ask these questions - crazy questions I know that perhaps you won't be able to help me with.

    If any of you have any understanding of my predicament or any experience in what could happen if I held off - I'd truly appreciate to hear from you.

    God bless,

    Lynette.

  • #2
    I'm trying to remember--you're the one who thought your insurance wouldn't cover the surgery, right? If I'm remembering correctly, that's great new news that they will cover.

    I really can't tell you what is best. I think you should bring this concern to your surgeon and see what he says. I do know they told me (2 curves over 60 degrees each), that I would progress 1 to 1.5 degrees per year. So if you wait 5 years, that your bigger curve would be well into the 80's. The larger the curve and the older we get, the harder it is for the dr's to get a better correction. I wish that someone here could tell you exactly what was the right thing to do.

    The other problem with waiting a few years is that you have to think about it and (if you're like me), worry about it for a few years. I know that it's been hard for me waiting 5 months. I don't know what I'd do to myself if I had to wait 5 years with this in mind. I'd probably end up in the looney bin.

    One other point, I met by random, a 55 year old woman recently who had this surgery 15 years ago by my surgeon. We had an hour long talk. She had one really big curve. Her kids, at the time were 9 and under, I think the youngest was 4. She said that it took her about 7 months to recover, but since then, she has NEVER regretted her decision. She feels perfectly normal and does everything. She says it gave her a life. I have to hold onto that thought myself when I doubt myself in the middle of the night.

    Good luck,
    __________________________________________
    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

    Comment


    • #3
      Thank you Debbe for your response. Yes I was the one who couldn't get the insurance -

      The problem with me thinking of this surgery is that I already have a life and amazingly even with that huge 76 degree lower curvature, I'm not in that much pain.

      It's so hard to electively have this major surgery when I don't even feel ill or in pain and I have my little babies who rely on me 100%

      If anyone else has any idea or had a similar experience I'd love to hear from you.

      Thanks,

      Lynette.

      Comment


      • #4
        Has either surgeon said when you need the surgery? There is a huge difference in them saying " you are going to need to have this surgery" and saying " you need to have this surgery within a year". My surgeon said anytime in the next 5 years, however I knew I would be losing my insurance due to divorce so I opted for surgery within 7 months. Looking back, I was so tired by the time the surgery date rolled around I couldn't have made it another year, let alone 5. I was not in huge pain, but I was in pain in places I had never had pain before, when I made my decision. I think with help and support from your family and friends you will be able to do this. Others can get them to soccer practice for you for a while. Or where ever it is they may need to go. Friends and family will bring over meals so all you have to do is reheat. I bet they will even come do a load of laundry for you. Start teaching the boys now that they have to pick up what ever they are playing with when they are done. You will be amazed how much help a 5 and 7 year old can really be if they know how much it will help out mommy. Good luck. I know you will make the decision that is right for you.
        Alicia
        Geish
        47 years old, dx at 13
        +30* to the right, +60* to the left, +30* to the right
        Surgery 12-13-07 - fusion from T4 to sacrum.


        http://www.scoliosis.org/forum/attac...tachmentid=267 Pre surgery
        http://www.scoliosis.org/forum/attac...tachmentid=268 Post surgery
        http://i156.photobucket.com/albums/t...s/DSC01091.jpg Xray from the side
        http://i156.photobucket.com/albums/t...1089-1-1-1.jpg Xray from the back

        Comment


        • #5
          I chose to have surgery when i had no pain, just a backache once in a while. My curve was >100* when i decided to have surgery - I noticed the shortness of breath, and x-rays showed the curve had push into my lung. My surgeon told me if i don't do this, i will be on oxygen 24/7, my heart will work harder so on and so forth. He also anticipate the curve will increase 1-2* per year. If i waited, i might no longer be a candidate. (just something to think about)

          It's hard to decide whether or not to have surgery when you are not in pain. But i finally decided to have it done now while i am still young (39). I am now 6 weeks post-op. Best of luck, and make the decision you think is right for you.
          Last edited by mish; 07-27-2008, 09:36 AM.

          Comment


          • #6
            Hi Lynette,
            I am 47 and had my surgery a year and a half ago. My curve was 100 deg and like Mish, (and you) I had very little pain. It is necessary but I don't know if you waiting a couple of years will make a difference- ask the doctor, but my guess is that it would be ok. For me, I just HAD to get it overwith, so the sooner the better! But we are all different, and maybe waiting for you would be the best thing-keep us posted!
            Cathie

            Comment


            • #7
              Hi Lynette...

              You have a tough decision.

              I think that the thing that you really need to consider is who will do the cooking, cleaning, laundry, etc. for the 3-6 months you'll be unable to them?

              If your curves haven't been progressing rapidly, you may find that it's best to wait until your kids are little more self-sufficient.

              Good luck.

              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

              Comment


              • #8
                Hi Lynette,

                I would like to say that I also don't have a lot of pain unless I do house chores or lift my gilrs (ages 4 and 5). I also decided to put off the surgery for now due to the fact that my back is not in pain all the time and also that my kids are still so young and starting school years and depend on me as well. I have a great nanny that takes care of my kids while i am at work but she also helps me out in the house like cleaning and cooking for me so i don't have pain everyday and therefore can put off the surgery for some time. I am involved with my kids when i am home and as a matter of fact i am always taking them to places and enjoying my time with them and for that reason i think i want to wait until they get a little older and when i feel that i am in such pain that i would not be able to live a normal life then i would have the surgery.

                I hope that you can decide for yourself and what is best for you and your family!! It took me some time to figure it out and I feel like i made the right decision. (My surgery was scheduled in Sept 2006)

                Take care and good luck!

                Mariya
                30 yrs, mom to two girls ages 9 and 7
                8/9/04 - 18* thoracic and 42* lumbar
                3/7/06 - 22* thoracic and 45* lumbar (38*kyphosis)
                4/8/08 - 38* thoracic and 50-52* lumbar (54* kyphosis)

                2007 - Scheduled surgery but cancelled due to no major health issues at the time.
                2011 - Back pain, spasms, sciatica, difficulty doing any physical work/activities w/o following back pain and spasms. Revisiting surgery decision and soon to schedule a doctors appointment to determine the progression since 2008.

                Comment


                • #9
                  Originally posted by mariya
                  Hi Lynette,

                  I would like to say that I also don't have a lot of pain unless I do house chores or lift my gilrs (ages 4 and 5). I also decided to put off the surgery for now due to the fact that my back is not in pain all the time and also that my kids are still so young and starting school years and depend on me as well. I have a great nanny that takes care of my kids while i am at work but she also helps me out in the house like cleaning and cooking for me so i don't have pain everyday and therefore can put off the surgery for some time. I am involved with my kids when i am home and as a matter of fact i am always taking them to places and enjoying my time with them and for that reason i think i want to wait until they get a little older and when i feel that i am in such pain that i would not be able to live a normal life then i would have the surgery.

                  I hope that you can decide for yourself and what is best for you and your family!! It took me some time to figure it out and I feel like i made the right decision. (My surgery was scheduled in Sept 2006)

                  Take care and good luck!

                  Mariya
                  I have a 85º left scoliosis post fusion and thanks to the daily practice of the Schroth Method I am pain free with increase vitality. Please visit.www:schroth method.com

                  Comment


                  • #10
                    Hmm...I don't know what to tell you. I can give you what is going on with us...background my DH has scoliosis. I have no idea what curve degree he is but he does have the back hump (I'm thinking that's the kyphosis?).

                    I do know his was caught Sophmore year and he was done growing. They offered him surgery then but it didn't seem to be a big deal if they opted not to. I get that impression from him (of course, who knows what his take on it was at then). I'm wondering if it was one of those, we can do surgery now or just wait and see if he needs it down the line type of thing.

                    He has never even been to the doctor for his scoliosis since after the original time and they decided to just let it be. He's 46 now. I would have no idea if it's progressing or not at this point. The thought of surgery for him as an adult hasn't even entered our minds since he has no problems. Knowing my DD's curve is 48* and knowing what my DH looks like, his *has* to be well over the 50* curve point. I know his dad ended up having surgery when he was in his 60's but that was due to constant back pain which I think might have had other issues as he had several different surgeries for things.

                    I'm assuming there was something affecting you to seek a doctor's opinion on surgery at this point. I know I would choose to wait if I weren't having any problems and it didn't seem to be affecting me in anyway. That would be ME though and I'm not the one with Scoliosis. I just know my DH would have to have some severe health risk before he would considering having surgery on his back at this point in his life.

                    I don't know if this helps you at all or not, just thought I'd give you another perspective.
                    Becky
                    Mom to DD (15) with S 48*+ curve
                    Had her surgery March 9, 2009

                    Comment


                    • #11
                      I think if you don't have to have the surgery right now, then it doesn't hurt to wait, but you also have to think of the consequences of waiting as well.

                      I am in pain at least once a day, but not necessarily all day and I have decided to have surgery. I am younger, so I know my recovery will hopefully be fast...I have insurance and I have lost a job before so I know that jobs and insurance aren't always a definite. And for the same reason you want to wait, I want to have mine now...kids! I hope to someday have children and I would rather get it out of the way now.

                      It has to work for you and your life as well as your health. I say weigh out the options both personal and health wise with your surgeon.

                      Good luck!
                      26 year old female
                      wore a brace in junior high
                      fusion of T4-L4 at 15 years old
                      broken hardware at 23 due to failed fusion
                      November 10, 2008 hardware removal and fusion of L3-L4

                      Comment


                      • #12
                        What a tough thing!

                        Let me just add that when there are children in the picture, there is no "good time"... it won't get easier for a very long time. Will it be easier now, when they are probably easier to handle than in another 5-10 years? How long can the surgery wait without affecting the outcome very much??? As your boys get older, you won't want to miss out on their various activities, not to mention the need to chauffeur them everywhere for quite awhile. I have been through all those childhood phases with 3 daughters-- and it seems like all you do is take on more responsibility and different challenges-- in a different way as they get older. I'm so sorry-- I know it's a really tough decision. If I were in your shoes, I would probably explain the situation a little to the surgeon (about being a single parent) and see what he says about waiting or going ahead with it...

                        I'm so glad the insurance is no longer a problem-- but that makes it an even harder decision, doesn't it? Now it's a possibility, whereas before it seemed too impossible. I'll be praying for you.
                        71 and plugging along... but having some problems
                        2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
                        5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
                        Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

                        Corrected to 15°
                        CMT (type 2) DX in 2014, progressing
                        10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

                        Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

                        Comment


                        • #13
                          Lynette.


                          Your post makes it seem like the scoliosis isn't effecting the quality of your life right now. Maybe you could imagine in your mind how things will play out if you had surgery now. And then imagine the scenarios 5 years from now or 10 years from now. Even at 52--since you are in good physical shape, you could still do well.

                          You don't say if your curves have changed recently. Is that what has brought you to consider surgery now? If insurance is a concern, then you will want to have a plan to maintain health insurance over the next few years and make sure that you will still be employable (or have a short term disability insurance plan in place) during recovery and after surgery. A longer employment history with your current job will help. If your boss likes you, its easier to get what you need. They don't want to feel like you are working there just for the health benefits.

                          Try not to scare yourself into thinking that waiting will have irreversible effects on your health. There are very few things that would make surgery urgent.

                          Hope that helps a little.
                          p

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