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Two weeks to surgery and feeling very scared...

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  • Two weeks to surgery and feeling very scared...

    Hello everyone,

    Good news first: We came back from a three day getaway with the kids and enjoyed every moment of it. It felt great to be away from all the worries and got to spent time with my family before surgery.

    Not so good news: I checked out the forum and for some reason got more worried than ever before. I guess I am just freaking out but some of the things that I read which were posted these past couple of days were a bit depressing. I really thought I knew about all the risks of this surgery but now I feel that I don't know all of them.

    What scared me the most tonight was reading a post that most of you talked about the neves reattaching and what you feel when that happens. I know that most of you say it should go away and that the nerves just wake up one day some time after surgery - but how serious is this?????? I spoke to a couple of patients and none of them ever mentioned it? Does it affect those that have anterior surgery or only the posterior surgery patients???

    Second concern: The incision hernia. Never heard of this before either. It's not in the books and the four doctors I saw never mentioned it either. Is this rare or common to happen? I don't know if it is something serious to consider before having anterior surgery and maybe to rather choose the posterior approach since the doctor said it is my decision which approach.

    I have cried for a while after I read what I read tonight and don't know what to do. I even think of cancelling this surgery because I just feel that maybe I would rather live with this pain and avoid all these problems. The biggest difference between most of the people and me on this forum that are going for surgery or had surgery is the pain and how much pain we have. I have pain but it is not anything like any one has descibed. I pretty much get pain only if I clean, wash dishes, bath kids, lift shopping bags or sit without support. I don't get pain if i simply avoid these chores. Now my husband thinks that this is already not normal but maybe it is not that bad compared to most of your pain. I just don't know if I will feel better after surgery or maybe I am better off with the way I am now or ateast until it will get worse????????????/

    Sorry for this very long post again but I am desperate for some answers and I would appreciate if you could help!!!!!!!!!!

    Thanks

    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
    Mariya
    I am going for surgery in about 7 hours. I have come to peace with my decision. I was very anxious a few weeks ago and had crying spells. I want to live without this pain. It is affecting all aspects of my life. My surgeon did say that there could be a chance for an incisional hernia. He also said that it was not likely.
    Good luck and if I can't post before your surgery we can compare notes when you get back.
    surgery 9/06
    Rothman institute

    Comment


    • #3
      Mariya,

      Please take some time to think your decision through. Like every surgery there are risks that are involved. It does not mean that they will happen to you. I have been through 5 different surgeries both posterior and anterior approach. I can say that i have never had any issues that were abnormal or uncommon. This forum is for education and peoples experiences, it is not intended to scare you. You have to imagine that there are hundreds maybe even more registered on this forum and a very small percentage of people have had complications. I would not like to see you make your decision soely you reading these posts and getting scared. If it is something that you need and want to do then you should be confident with your decision. I am sure with whatever your decision it is will be the right one for you I would suggest to talk to your doctor and make sure all of your questions are answered. Dont feel that you can ask many questions or even ask questions here, we are all here for eachother.
      I hope this forum helps you and not scares you.
      Sarah 25 yrs old- Married with three english bulldogs

      1995-Surgery for scoliosis fused T3-L3.
      2000-Surgery for Rod breaking, relaced rod and took out upper rods.
      March 2005-Surgery for removal of all rods.
      August 2005-Fusion of T10-T11 due to crack in fusion, Rods put back in.
      August 2006- Surgery for fusion from L4 to sacrum.

      Comment


      • #4
        Mariya -

        It's natural to be scared. You are not alone, I think I can safely say we all go through that before surgery. As far as nerves re-growing and related pain issues, it's just one of those things. It's natures way of letting you know you're healing. It's a good thing because if they didn't grow back, you'd be numb in certain places forever. There are medications out there that can help with this type of pain if it becomes a problem for you. Which brings me to my next point. What happens to one of us is not necessarily indicative of what happens to us all. Try to remember what got you to this point. Take a deep breath and make an honest assessment of the situation. Are you having doubts because you're not sure surgery is right for you? Or, are you having doubts caused by fear of the unknown?

        The biggest difference between most of the people and me on this forum that are going for surgery or had surgery is the pain and how much pain we have. I have pain but it is not anything like any one has descibed. I pretty much get pain only if I clean, wash dishes, bath kids, lift shopping bags or sit without support.
        Pain is subjective, but it sounds like you have become conditioned to accept it. Ask yourself this, do most people suffer pain while bathing their children, clean their homes, sit without support? Think about it. Meditate on the situation and try to arrive at a decision you can make peace with.
        Brandi
        Congenital Scoliosis, 58* lumbar curve
        Combined Anterior/Posterior Spinal Fusion w/Laminectomy May 22, 2006
        L1-S1
        Dr. William Lauerman
        Georgetown University Hospital, Washington, DC
        Pedicle Subtraction Osteotomy @ L3, Posterior Spinal Fusion L2-L4, rod removal with re-instrumentation T10-S1 and Laminectomy February 5, 2009 to correct flatback
        http://brandi816.wordpress.com/

        Comment


        • #5
          Mariya-
          My pain is just like yours- I don't have any unless I do something that requires bending. (weeding the garden for example). But I am having surgery this year- I am 45 with a severe curve and have been told by 4 doctors that the surgery is inevitable to protect my heart and lungs -and the pain WILL worsen. The sooner the better because as you age the surgery is more difficult. I know it is hard to be "excited" about surgery when you don't hurt but I am already having shortness of breath at times- a reminder that this is a good decision. You are not making a mistake! I wish you the best- Cathie

          Comment


          • #6
            Mariya, I sent you a PM.
            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


            • #7
              Mariya,
              The support of this forum helped me greatly thru my surgery & now thru my recovery! As my surgery date came closer, I really only read positive posts! I was squimish about anything to do with the hospital so I simply skipped any in-detail posts on hospital stuff! I was confident that I was healthly & made sure I stayed fit & ate a well balanced diet..ie.,. I made sure I always had a big steak before giving blood each week!!!
              Also, very important, I felt extremely comfortable with my surgeon. I had full confidence in his abilities to do what he could for me!
              Believe me, I know, the last couple of weeks before surgery are difficult! Try to look ahead of the surgery a month or so when you will be feeling much better! I am 5 weeks now & really feeling quite good! My scars have just about healed & yes, I occassionally have some tingling in my left leg at times, but nothing major! Lynne

              95% thorocolumbar curve reduced to 42% fused T-11 to L-5
              Dr. Boachie/Dr. Kim@ HSS in NYC
              http://lynnebackattack.blogspot.com

              Comment


              • #8
                mariya, im sure everything will be fine with your surgery.its normal to be scared but just think in 2 weeks this will all be behind you and wont seem so scary anymore.ill be praying for you during this time.
                Trudy T60 L70 posterior surgery feb.8th 2007

                Comment


                • #9
                  Dear Mariya, I don't post often on this forum much anymore because i'm almost a year post-op and doing well... I'm just so normal that it's boring...lol. There are probably many, many patients like me who have had this surgery and have gradually stopped posting here. But because you don't hear from us, it seems that most people are having problems, which isn't the case at all.

                  I was like you and could manage my pain by avoiding certain chores and activities... but as the years passed the number of things i had to avoid increased and my limitations grew... The bad thing about scoliosis is that it doesn't spontaneously improve, it only worsens. I reached the point that i decided scoliosis had taken away enough of my life and i wanted to stop it now... Surgery did that for me... Now i can hold and play with my grandchildren, can kinda run when i need to , bend over and sweep and mop and change bed linens... in other words, normality has returned for me for the most part...

                  Your anxiety is perfectly normal and to be expected... Just keep your eyes on the end result and the path that leads there won't seem so scary. We are here to help you when you need us.... (((((hugs)))))) to you...

                  JoAnn

                  Comment


                  • #10
                    Also 2 weeks out...

                    Mariya,

                    Hi, I just read your post this morning - I've been reading through posts for quite a while now and just decided to join. I'm scheduled for surgery in 2 1/2 weeks. Just like you, I've been reading these posts this past week and started freaking out. I've been pretty anxious all along and reading about the growth of the nerves & muscles, even though is normal, is still sounding scary. This forum and a few people that I've been in touch with personally have all given me positive feedback.

                    Thanks to everyone here for sharing your stories with us. This really helps ease some pre-surgery anxiety, at least it does for me. I'm sure I'll be back between now and my surgery and most definitely post-surgery to help the next one.

                    Thanks everybody!!
                    Nickie

                    S-Curve 49 lower / 51 upper
                    Fuse - T2-L4/5?

                    Comment


                    • #11
                      Can relate to what you are feeling

                      Dear Mariya,

                      As someone who is 6 weeks post-op from my posterior surgery, I can relate totally to what you are writing about. Even though I had made the decision to have the surgery a year and a half before, all of those fears came to new life a couple of weeks before.

                      I was very scared as to whether I was doing the right thing or should just live with the pain and disability of the scoliosis; at least I knew what I was dealing with. My husband and I were very concerned about it causing more problems and also about complications and pain after recovery. None of these problems happened for me; the surgery and recovery went very well and smoothly and since you are young and healthy, most likely it will for you as well.

                      All of these concerns are very valid and you should address as many as possible with your surgeon and/or his staff. If the anxiety gets so you can't sleep or function, ask them for something to get you through the next couple of weeks before surgery.

                      About the posts about the anterior hernias, I don't think these are common. I read this forum for 2 1/2 years before anyone even mentioned such things. Maybe you could ask your surgeon if he has ever seen anyone have one after his surgeries. As far as what procedure to have, if you have trust in your surgeon, go with what he thinks is best for you.

                      I would also discourage you from reading anything that looks scary on this forum until after your surgery. Just write in with your questions or concerns and we will try to give you encouragement and support.

                      Deb

                      Comment


                      • #12
                        I guess my advice would be for you to be informed about your condition and the surgery and it's outcomes as they relate to your specific case, but not to overwhelm yourself with every detail of everything that can possibly go wrong during or after surgery. Be prepared, but not paranoid.

                        Before my surgery, I too read all of the posts by people who had already gone through it and when someone mentioned something negative happening to them, I tried to keep in mind that that was their scenario and that it most likely would not happen to me, but if it did, I had knowledge that it could possibly happen and what the outcome could be, but I did not let myself think that it was going to happen to me.

                        You have to know in your heart that you've chosen a surgeon you trust and have become as educated as possible about the pros and cons of your condition and the upcoming surgery. Thinking too much about the other stuff (pain, nerves, infections, allergic reactions, etc) will really drive you crazy and will cause more worry than is necessary. Good luck!

                        Comment


                        • #13
                          Thank you all so much....

                          Hello everyone,

                          I am so relieved to know that so many of you are out there and care to help someone like me and are just so supportive. I really want each and everyone one of you to know that every single thing that you mentioned did help to put my mind at ease. I never knew that this could really help. Everything you mentioned in your replies is absolutely true and that these complications are so rare. When I read the posts last night I immediately paniced and did not think that these are some rare complications. All I thought was Oh My God what am I doing!! I guess I just take things so serious and personal that it literally drove me crazy. I am much more comfortable now that you guys explained it to me that these are just some cases of complications to be aware of and to just trust my doctor. I am confident in him and have no doubt about him. Sometimes I need to hear some reassurance and it really is comforting to know how most of you are doing just fine!!!

                          I guess you are right that I should just stop reading the negative posts and take a break and enjoy life as much possible before the big day.

                          You are great and again I want to thank all of you for your immediate and positive feedback!!!! I know I can talk to you and get the relief I need because there is no point talking to my family, they are all against it and every time I tell them something they tell me that it's not too late to say NO.

                          Thanks you and I will keep you updated!!

                          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


                          • #14
                            Hi Mariya,

                            That's good that you have thought things through, and still decided on your own to have surgery, as it's YOUR decision only and having doubts and asking questions is normal and only will reassure you in your decision. Fear of the unknown is much worse than fear of what you know.

                            Think posittive, it helps a lot. Just think of what you need to do, take it a step at a time and try to block all the negative thoughts.

                            You're fortunate to have this forum to get info and support. I wish I had that at the time.

                            Take it easy and good luck.
                            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


                            • #15
                              Hi Mariya,

                              I don't usually respond to a post that has received such a wealth of excellent
                              advice, but I just felt the urge.

                              All the tasks you mentioned that cause you pain now at your age, just imagine 20 years in the future. The anticipation of this surgery is, in some ways, more difficult than actually having it. Not that it is an easy surgery, but all the things that run through your mind can be just as frightening!!!

                              It is so normal to be freaking out about what you have "choosen" to do. And the old saying of "expect the best, but be prepared for the worst" comes into play here, whether we want it to or not. It is okay to be scared and worried, I think that's normal!!! We have all felt the same way.

                              No matter what choices we make in life, there is always a risk involved. You happen to have the great fortune of making this choice at a young age where medical advancements in this field, just keep getting better and better.
                              They say "knowledge is power", but it's also scary. I know how hard it is to not focus on the negative, been there, done that, as we all have!!!

                              You are not alone in whatever emotions you have, and never feel ashamed to have them.

                              Shari

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