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  • One week to the surgery and have some concerns

    Hello everyone,

    I just wanted to know what you think about this:

    I have a TL curve 42* and thoracic compensatory curve 22*. I have back pain in the upper back where the shoulder blades are. When I initially went to the doctors my main concern was my back pain which restricts me from doing almost anything physically (i.e. bath kids). I was told by all the doctors that I need to have the surery done and that would probably relieve the pain. The doctor that I had chosen was in my opinion honest and told me that he does not think that there is a connection between the upper back pain and the lower curve but had said that that I am an odd case because of where my pain is. He initially suggested correcting both curves and I came back later and told him that I don't think I need the longer fusion because the upper curve is still not severe. So we agreed that he was only going to correct the TL curve which he said would stop the progression and deformity but that he doesn't think that it will relieve my upper back pain.

    I had seen my doctor's physician assistant today to get tested for allergies to the metal and we had a discussion. I told her that I still had some doubts about having the surgery because the doctor said that this surgery most likely will not relieve the back pain. She said that it was my decision not to have the upper fusion. But I told her that it was probably going to get corrected on its own and then it was not warranting a fusion at 22*. She told me that what the doctor planned on doing was fixing my kyphosis which I believe is 38* and it is falls in the normal range. By the way she also told me that hse has the same back pain and she doesn't have scoliosis and that vertually everyone has back pain in the upper back and that is why we go to the PT or Chiro. Whatever....

    I had told her that my reason to have the surgery was to become pain free and that yes I would like to stop the progression and also look straighter but the pain was my biggest reason considering that this is a major surgery and the risks and/or compliactions involved.

    I know that I am panicing right now but I also know that I am not feeling good about having to go through this surgery and to get pain relief eventhough I understand that it is never guaranteed that the surgery will get you pain free. But I know that mostly eveyone that I know who had the surgery have been pain free.

    I tried to speak to the doctor but was told that he is in a conference all week and that they will email him to let him know that I need to talk to him. I feel like the time is running out and I need to decide soon.

    Did anyone have this situation? Or does anyone know whether my back pain has anyting to do with the TL curve and whether this surgery will help the pain at all?????

    Thank you all so much and look forward to all your responses on this!!!!!

    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.

  • #2
    Hi Mariya,

    Obviously I am not a doctor and certainly can't tell you what I think you should do, but I do want to let you know that you have been in my thoughts as your surgery approaches. I am awaiting it myself and can't speak from experience, but I do know how easy it is to doubt yourself when fear and anxiety are involved.

    I have a similar curve to you with the thoracolumbar being 55 and the upper being in the 20s and also get that upper back pain between my shoulder blades which can get quite severe. My surgeon (and remember this is one man's opinion) said that he believed that pain was caused by my curvature and had a chance of diminishing with the surgery. Again, he offered no guarantees though. I understand your frustration about not being able to talk to your surgeon and it sounds like that is something you really need to do to put your mind at ease and/or make your final decision. As others have said before - trusting your surgeon (and being at peace) is the number one thing!

    You are very strong and brave and I and the others on this forum are sending you positive thoughts this week as you begin your new journey.
    Best,
    Anya
    "You must be the change you want to see in the world."

    Previously 55 degree thoracolumbar curve
    Surgery June 5, 2007 - Dr. Clifford Tribus, University of Wisconsin Hospital
    19 degrees post-op!

    http://abhbarry.blogspot.com

    Comment


    • #3
      Deep Breaths Mariya.............deep breaths
      I had lower back pain and was told the surgery would most likely alleviate the pain, but there is NEVER a guarantee. I have been pain free for four months now.
      If it's any relief, I considered cancelling my surgery up until the last minute at least 3-4 times a day! Don't we all ??? As far as I know, you don't have much flexibility to begin with in your thoracic area, so I'm not sure why your surgeon agreed not to fuse you since you are already in surgery. I've heard the lower you get in the lubar,sacrum region the more you may want to fight not being fused. Hang in there and try to speak to you doctor before the surgery about all of your fears.
      Jenn
      37 y/o female
      60 degree lumbar
      45 degree thoracic
      1st time anterior/posterior surgery May 8th and 10th 2006
      T 5 to S 1
      NYC

      Comment


      • #4
        Thanks Anya and Jenn for your support. But I just called and cancelled the surgery. It was something that I felt that I wasn't sure if i was making the right decision. It all started when I had first found out that my upper back pain was not going to taken care of if I had the surgery. Yes I know that there are no guarantees but still most of the patients have stated that their doctor was giving them hope but not in my case. I do believe that scoliosis has something to do with the pain but it just doesn't make sense. I am starting to feel that I simply have weak musles in that area and need to take care of that by doing excersises, yoga, swimming, and going to the physical therapy. I don't think that my curve will be taken care of that way but atleast I'll know that I tried anyhting and everything posibble to alleviate the pain since that was the number one reason to get the surgery NOW. So that is why I decided that I would first try to do something about the pain first and then I can always turn to surgery. I am still fairly young and time is really on my side.

        Also, most of you would tell me that I would still need to get the correction of the lower curve to (1) stop the progression and (2) stop the deformity. My answer to that is that i really haven't seen the progression in the last two years and the deformity is there but not very noticeable to many people that know me.

        I will probably have the surgery one day but right now I just feel that I am not ready for it. I have decided to have the surgery in about a month and a half only because I thought that the circumstances were perfect but that shouldn't be the reason for someone to have surgery so soon into finding out they need surgery.

        Sorry that I sound dissapointing to some that are still considering surgery but I just felt that I should update some of you who trully helped me and hope that I can make the best of the time right now because I plan on doing something for the pain now and observe my progression.

        Thanks again!!!

        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


        • #5
          Mariya,

          I think you made the right choice, if for no other reason that you were not 100% convinced you were ready. I have not had the surgery, but I'm in a very similar situation as you - 25 years old with a 45* thoracic curve. I often get pain and stiffness and in general just feel the effects of the curve. I also am very scared of the curve progressing and being more "deformed" - even though my friends and family do not see it either!

          I think you should step back and take a break from the surgery stress. You are right, you have time (like me ), and you may want to re-visit the whole idea later.

          Personally, I work out and get deep tissue massages every now and then, and it does help my upper back pain. There are lots of things you can do, even for now.

          Best of luck and smile, you made the right choice!

          Comment


          • #6
            Dear Mariya,

            Glad that you wrote in and shared your before-surgery concerns with us. I read your letter earlier today and was undecided how to respond at first; maybe because I just had surgery. I thought about it during the day, then got back on and read the responses, especially yours.

            I have to say that, even though I did finally have my surgery at 47, I think that you are making the right decision to postpone it for now. The reasons that I think it is the right decision are:

            1. You are not in pain that is disabling your from your normal activities.
            2. Your curvature is not progressing rapidly.
            3. Your children are preschoolers and require your undivided attention and care and you will not be able to give them that (including lifting the 2 year old) for at least a year after surgery.
            4. There is no guarantee that fusion will stop the pain. My own pain and stiffness has increased between my shoulders since surgery (although it is still healing and may calm down).
            5. You are young enough that you have many years left to watch and see how your curves progress and still get the surgery at an age where you can get a good correction.
            6. The curvature is not noticeable.

            I went through my early adult years with moderate scoliosis curves that gave me intermittant pain. The pain spasms were usually helped by mild exercise, physical therapy, chiropractic treatments, massages, heat, etc. Ask your doctor for a referral to a good physical therapist who is experienced in treating scoliosis. Then dedicate yourself to following his recommendations faithfully. Your scoliosis puts unequal stress on the muscles and tissues in the back and he can test them to see which ones need to be stretched and/or strengthened. You may be sore at first, but in the long run it may be a long term answer for you rather than surgery. It was the biggest thing that kept me going through the years my children were young, although I did finally have to have surgery because of the rapid progression of my curves to T70/L76 which caused disability.

            Good luck and let us know how you do.

            Deb
            Last edited by Cakedec; 09-14-2006, 08:10 AM.

            Comment


            • #7
              mariya, i think you made the right choice because you definatly need to be sure of your decision to have surgery.also your curves arent quite to the serious point to have it done right away, they may never even progress.you are at an age where you still have time to think about it .i was seeing my orthopedic surgeon every 2 years to watch my curve progression and finally this year its started rapidly progressing and i knew i had no choice but to get it done now while im 30.so thats good that you are just going to watch and see.
              Trudy T60 L70 posterior surgery feb.8th 2007

              Comment


              • #8
                Hi Mariya,

                I'm glad you came to a decision that you feel comfortable with. And please don't think that you are "disappointing" anyone. It is your life and your body and that is what is most important. (That is what I'm trying to tell my family because I feel they are pressuring me into it right now), but no one can tell you what to do except for you. I have to admit that I also wondered how you were going to do it with two very young children. That is one of the reasons I will probably do the surgery now at 27 because I want to have children in a few years and am nervous about doing it with young children. Anyway, I hope you feel a sense of peace with your decision and we all wish you the best in managing your pain!
                -Anya
                "You must be the change you want to see in the world."

                Previously 55 degree thoracolumbar curve
                Surgery June 5, 2007 - Dr. Clifford Tribus, University of Wisconsin Hospital
                19 degrees post-op!

                http://abhbarry.blogspot.com

                Comment


                • #9
                  Mariya,

                  I think you made the right decision, as you said you can get surgery later and are still young. Think of the progress they make every year with this surgery, that's another positive. I backed out the night before surgery when I was 18, and never regretted it b/c I was mostly pain free and very young. When I had surgery at 26 I do regret not waiting a bit more b/c of everything that has happened to me since and b/c I wasn't as informed as I should have been. Plus now I have internet, and again surgical procedures have evolved in the last 9 years. My family also pressured me the first time, they believed the doctors that said I could die so much more earlier and that correction could not be achieved even in my twenties, wich was bull and a scaring tactic, and they(my parents) now admit how wrong they were to do so. I had only posterior and they achieved a big correction. When I had surgery at 26, they didn't pressure me, and understood it was my decision. The doctors were much more real and honest as well.

                  My doctor also told me back then that it was not a guarantee that I would be pain free, but it helped my curve pain(even if other types of pains have developped), and I am fused in the thoracic area.

                  Good luck in the future and always seek info about the surgery and other treatments.
                  Last edited by sweetness514; 09-13-2006, 05:48 PM.
                  35 y/old female from Montreal, Canada
                  Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
                  Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
                  Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
                  Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

                  Comment


                  • #10
                    It sounds to me that you have made the right decision for you- which is exactly what you should do. It sounds like your pain level is tolerable- which is great! It has been very hard for me since surgery because I have a 2 y/o daughter- and what I can do with her is very limited to say the least. That has been what has been the hardest for me. In the beginning we were hoping that I could make it until I got her in school- but my curves started to rapidly increase and my ribs collapsed- hence, no waiting for me. Just make sure they monitor you so that if they start to increase you will be able to re-evaluate. Try the physical therapy and especially heat therapy when you have the aches.
                    Angela
                    29 y/o f w/76 degree curve.Surgery done on June 26th, A/P, rods, instumentaion, rib removal- now 18 degrees!!

                    Comment


                    • #11
                      I'm shocked.

                      Well Mariya,
                      I must say I gasped out loud when I read you cancelled your surgery. I knew your MAIN concern was about not getting the guarantee of a pain free post-op life, but none of us did. I think from all I have read here on this forum only a few still have some pain but, not the same as pre-op. I hope you don't regret your decision and I hope you are now at peace with it. I thought when I read the reply by Anya (abhberry) about her similar curves and pain and what her Dr. said it would help ease your mind since I KNOW that was your #1 and ONLY concern as of last night.

                      Deb, (cakedec) what Mariya didn't mention was that
                      1.She is unable to do normal activities
                      2.She has live in help now but, will not later.
                      3.Her curve is progressing.


                      I only mention the above to give the rest of you the whole picture as we are a bit of a family here.


                      Mariya, I think the time between you finding out there was an opening for surgery and the actual surgery date was way too soon for you to do the research we all had plenty of time to do and to accept the fact you needed surgery and also to prepare for it. (Don't get me wrong EVERYBODY, but she and I have talked a lot about all of this.) I hope you didn't do, on a whim, what we ALL thought of doing with 1 week to go before our own surgery. (Cancel it.) Also, today I thought of you, at your age, needing to make this decision and if I would have made the same decision I did at 43 if I were 24.(With my same situation.) I can't know for sure.........honestly. Also, what sweetness wrote makes a lot of since. Although I don't see a huge difference in treatment in the near future happening as the current technique is only around 4 years old. (From what my surgeon told me.) I know you made the right decision because it is the decision for you and only you. I hope Sam will be supportive and help you along the way as you explore other ways that may help relieve your pain. I wish you all the best and I will be in touch. Keep us all posted as we have all come to know you and hope to help you along your journey be it surgery or not. All my best always.

                      Comment


                      • #12
                        Mariya--
                        Surgery like this is a big, big thing...
                        I had curves in 40/50's in high school-college & I was in good physical shape with no signs of deformity...so your curves seem moderate to me! I think at your age you are flexible & you should give exercise a chance! I'm sure if you research it, there are many exercises developed for scoliosis patients..I still remember some of mine from high school..pelvic tilt..etc! swimming was always a good to do because it utilized both sides of the body...hope it still is good..
                        I would not suggest waiting to the extent I did. I probably should have had this done in my late 30's-early 40's but I was really unaware that anythg could be done...
                        I lived quite happily with balancing curves(S) from a teenager to the birth of my boys...so you can live quite healthy with balancing curves! In my case, the birth of the boys(I'm convinced) knocked my bottom curve way out! Keep being checked to see if there is any progression..but see if you can wait until your children are older..it's much easier...........Ly

                        Comment


                        • #13
                          Hi Mariya,

                          I tried sending you a PM but it said your mailbox was too full. Sorry.
                          Best,
                          Anya
                          "You must be the change you want to see in the world."

                          Previously 55 degree thoracolumbar curve
                          Surgery June 5, 2007 - Dr. Clifford Tribus, University of Wisconsin Hospital
                          19 degrees post-op!

                          http://abhbarry.blogspot.com

                          Comment


                          • #14
                            Mariya,

                            Waiting a while longer, while you continue to research and explore your options, sounds like a really sensible plan to me. Especially since there seemed to be some confusion between you and your surgeon....and unclear expectations....I would say that time is definitely on your side.

                            Good luck and best wishes.
                            Chris
                            A/P fusion on June 19, 2007 at age 52; T10-L5
                            Pre-op thoracolumbar curve: 70 degrees
                            Post-op curve: 12 degrees
                            Dr. Boachie-adjei, HSS, New York

                            Comment


                            • #15
                              Wow I am really surprised!!!

                              Hello everyone,

                              I can not explain the feeling i had when i saw how many of you responded and then how you all responded meant so much to me personally. That no matter what I decided you are all so very supportive about my decision.

                              I must say I don't know whether it was a right decision but I do know that it is never too late. My curves are not rapidly progressing and I am not dying from the pain either. The number one reason why I decided not to go with surgery was that the doctor told me upfront that he did not think that surgery would take care of my back pain and I believe that he was honest enough to tell me the truth. So I figured that I will try alternative methods for right now and hopefully that can take care of the pain.

                              I had an urge to specifically answer back to all of you who had an input for me at this very crucial time in my life. I know that it is too long but I wanted to let you know how i feel and you all had very good advice.

                              Ly,
                              Thanks for telling me about the special excersises for scoliosis and I will definetly take a look at that. I wish I kew how to swim but I guess now is the best time to learn it and i also heard that it helps tremendously. Like you I also saw that the curves just went crazy after I had my two children and I am convinced that it progressed a lot due to that. By the way, I am so happy that now I can still enjoy my 2 y/o baby and that I won't miss out this cute age. I will definetly keep checking the curve progression and will not wait if it does progress further. Thanks again for everything!!!

                              Angela,
                              I was so relieved to know that i will be able to play and take care of my 2 y/o now that I will not have the surgery. But I want you to know that your situation was different than min and you couldn't wait as your case was worsening. Me on the other hand, I have only found out that I could have surgery only about a couple of months ago. So I definetly think I still have time to think through and make sure that surgery is for me. Hope you recover quick and that you can have fun with your daughter as well. Thanks a lot for all your help!!!

                              Hi Sweetness 514,
                              I totally agree with what you said as far as the progress in surgery and the fact that we are so young and don't really want to go through this type of surgery at sucha young age. I was also thinking about not having any regrets after the surgery and that I should have waited and enjoyed my life a bit more. Also, I always keep in mind that I can't think that this is all about me because I have a family and two very young kids. IT is much tougher to make decisions like this when you have kids and family depending on you. I am almost sure that I probably would have the surgery done if I was single. I guess if the time was right and I was ready I would have had the surgery but I still had doubts and wasn't as informed as i would like to be about the post-op things. Well thanks for your support and it really has helped me through out this difficult time for me!!!!

                              Hey Anya,
                              Thanks so much. I really did not want to scare off anyone who is going to hav surgery because I was in the same situation and really was getting nervous when I read things like this. I just want them to know that I had my personal reasons and that's all. You are absolutely right about having the surgery first and then having the kids because I had a very very small curve before kids and then after my first i saw some change in my body but nothing serious. Then after teh second birth I saw a huge difference in my body shape. I had no idea what had happened to my body until my doctor told me that I should get the x-rays. That is how I found that my curves progressed so much. I had no pain at the time and only had deformity (slight). So, my advise is if you need to get the surgery get it now before you have kids and I know of a girl who is 31 y/o and she had surgery first and then had 2 kids and she is doing fine, very flexible and has no regrets. Good luck to you as well and I am gald you helped me!!!

                              Gayle,
                              You just said it all!!! I think you are so right about what you said I agree with you 100%. I feel that I wasn't at ease with my decision and that my curves are not at a point where I must have surgery right away and that it may never even progress (how cool is that!!!). I also said that had my curves been watched for a couple of years and there was a sign of progression and my curves were definetly getting worse, then I would have had viewed the surgery differently. SO I do think that I made the right decision and happy that I can enjoy life right now. Thanks for pointing out some key pointers because sometimes I need to be reminded why I chose not to go ahead with the surgery because at times it feels depressing that I cancelled the surgery and that maybe I will never be ready for it again. Thanks and I appreciate all your support!!!

                              Deb,
                              You really analyzed my case :-). That is so nice of you to actually give me the advice you did and especially to state each reason why I am not going for the surgery right now. I personally think the same and hope that I did the right thing. All your points are correct and I only have to add that my pain can be bad at times but then I never took even Tylenol for relief. So that tells me that I might just have high pain tolerance or never thought of taking a medication for it. I only try to avoid things like lifting kids for more than a few minutes or bath them myself sort of to avoid cauisng the pain. To me I think that that is limited activities but the pain is not restricting me from doing anything I want to do. I can live with the fact that I have a back problem and that I should be cautious about some activities that cause it. I can certainly go to work and I am pain free most of the day. You actually reminded me about seeking professional physical therapist who knows about scoliosis and muscles that need to be strenghtened. I had seen a DO doctor before i considered surgery and he did exactly what you said to my back. It also helps to know that you were able to avoid surgery for many years with the pain management techniques. Thanks for all you help and great advice, I certainly needed it!!!!

                              Hi JamieAnn,
                              Great to know there is someone out there with the same situation as me. I am just taking your advice and keep on smiling the whole day. I agree that we should just keep wathing our curves and that we don't have to have surgery unless it is necesarry and 100% sure that we need it. I so want to take a break from all the stress that I ahd these past couple of months and just revisit the whole idea later on like you said. I am also going to start getting the therapy I need and like you and others said that should keep me pain free for long term. I will keep smiling and I do hope that this is whats best for right now. Thank you and good luck to you too!!!

                              Summer and Suzy,
                              Thanks so much and hope that you have great recoveries and its great to knwo that you are doing very well in your recoveries. All the best to you and just to update you, my doctor still hasn't called me yet. I guess he has many patients but just wonder if he even cares? I was hoping to hear back from him and never did. Well, maybe he has a good reason for not giving me a call. Who knows right? I always try to think positive of people and hopefully if one day I need to have surgery he will not deny me.

                              I want to thank you all again from the bottom of my heart because and you all are really amazing people!!!! Good luck to you and thanks for letting me share my story with you. I'll keep in touch!!!!!!!!!!!!

                              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

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