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  • Need Support

    Hi All,

    It's been a while since I've posted...but I've been reading posts and keeping up with all the current events.

    I received my pre-op appointments and other paperwork in the mail a couple of days ago. Wow, that really made everything a reality. It also shows that now Dr. Boachie is going to fuse from T1 - L3 (previously T3 - L3). My surgery date has also been changed to September 18th.

    I started really thinking about the day of my surgery and started to have a mild panic attack. My emotions are in overdrive and I seem to well up with tears at the drop of a hat. I'm sure deep down I'm really worried about the surgery. (I'm good at suppressing feelings!)

    I know I'm doing the right thing, but there's always that question on whether I should wait or not. My kids are still so young, my sister wonders why I'm doing it, and my husband is just so scared he doesn't want to talk about it.

    This forum is so great, I just really need support right now and I know I can get it here! Thanks everyone!
    MishP
    38 y/o
    Diagnosed with Scoliosis at age 6 - Bracing didn't help
    Brace off at age 12
    Saw Chiropractor/massage therapist
    Pre-op
    Upper Curve - 115 degrees
    Lower Curve - 85 degrees
    9/18/07 Anterior/posterior surgery w/Dr. Boachie-Adjei
    Fused T2-L3
    Not sure of post-op correction

  • #2
    Support when you need it.

    Hi MishP-

    I am scheduled for my surgery by Dr. Boachie in December, and at this point I am really calm but I fully expect to fall apart as the time gets closer. This forum provides support not to be found typically in family & friends.

    The reason you are doing it now is because your curves probably will continue to worsen, which means that the amount of correction possible will be more limited, and the fleibility of the spine will decrease as you age. Recovery is definitely harder as you age, so by having surgery now you are likely to have a faster recovery. For me, age is a limiting factor in the correction Dr. B hopes to obtain

    I don't know the ages of your children and I am sure it is hard for them to understand what you are going to go through; I am sure you will do everything possible to make it easy for them. Reading other posts, it appears that many spouses are so scared they won't discuss it. As for siblings, who knows? My sister was opposed to my surgery for a long time - but it is your body and your life, not theirs.

    Feel free to PM me anytime.

    Spine Sister Janet
    As of 12/25/07, age 62, 100* thoracic kyphosis, 73* L1-S1 lordosis, 37*/25* compensatory S-curve scoliosis. On 12/26/07, Dr. Boachie @ HSS NYC did 11 hours ant. & post. procedures, fused T2-L2, kyphosis now 57*, scoli 10*. Regained 2 1/4 inches in height!! Improving every day.

    Comment


    • #3
      Mishp

      My husband was also very scared as were my kids, so I never let them know how nervous I was. I tried to stay positive and tell them how much better my life would be. I think this helped me because when I got scared or nervous, I put it out of my mind most of the time.

      I also had alot of family that didn't understand why I would do this. So a couple weeks before the surgery I had a party and invited all my family and during the party, I brought out the x-rays of my back and they were all shocked at how bad it had gotten. I always wore baggy cloths to hide it. I had one sister who totally supported me before this day as she had been clothes shopping with me the year before and seen my back. Needless to say after seeing the x-ray, everyone understood.

      The degree of my curves were not as bad as most, but I had a severe side shift and my ribs were resting on the hip and my head was centered over the right leg.
      Patty 51 years old
      Surgery May 23, 2007(43 Birthday)
      Posterior T3- L4
      Pre surgery curves
      T-53degrees
      L-38degrees
      and a severe side shift to the right.
      Post surgery curves
      Less than 10 degrees
      Surgery April, 2006
      C4 - C6

      Comment


      • #4
        My husband met me after my original surgery and did not know all that I went through. He has been with me every step of the way when I had revision surgery and many other procedures. He drives me to ALL my appointments and even cleans house a lot of days when he gets home from work. If I am having a bad back day, he will even cook dinner for me. Your husband is probably just worried for you. A couple of weeks before your surgery, make several of your favorite meals and freeze them. I did 2 weeks worth and told my family that they were for when I got home! Some prepalnning will make things go much easier on both you and your family. My teenage daughters learned to cook their favorite meals before my surgery so that they could help with the cooking. (We live out in the country and there are no take out places or pizza deliveries out by us!)
        T12- L5 fusion 1975 - Rochester, NY
        2002 removal of bottom of rod and extra fusion
        3/1/11 C5-C6 disc replacement
        Daughter - T7 - L3 fusion 2004

        Comment


        • #5
          waiting is tough --- plus fear of surgery

          While I was waiting for my revision I had so much gratitude that help was available; how would you feel if nothing could be done? Curves like yours and mine, are definitely life shortening not to mention the misery later on.

          Having your husband speak to another husband whose wife already had the surgery would help. My mom, who was 85 at the time, was afraid--she thought it was for cosmetic reasons; my cousin, a physician, understood perfectly. Your children might be able to correspond by e-mail with other kids whose mom's had the surgery. Dr. Boachie's office provided me with the names of patients with a similar history who had the surgery.

          All that being said, I had to use my spiritual tools on a daily basis.
          In my case the only way out was [B]through.
          Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
          Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

          Comment


          • #6
            I like what Karen said about 'spiritual tools'... I became even more spiritual and prayed a lot before surgery. I feel now at almost a year past, I'm not sleeping thru life but enjoying every day more than before surgery!
            I remember my husband , the weeks before surgery,walking in our garden most mornings before he went to work. I think he went out there to pray...I felt so bad for him and all he had to go through with me....it was difficult for him.

            Comment


            • #7
              If left unchecked, worry will erode the mind until there is nothing left but paralyzing fear.
              Lord, when I worry, I will turn my thoughts to You and trust.
              Then I will not have a reason to be afraid.

              IF GOD HAS BROUGHT YOU TO IT, HE WILL GET YOU THROUGH IT.

              Comment


              • #8
                Well said, Chris!! an excellent prayer!

                MishP- Your curves are quite severe- If i were your family, i would be more worried about what would happen if you did not get the surgery, BUT, of course they are panicked because of the fear of the unknown- Surgery is a big transition that does change everything in small ways, but, there are some great threads on this forum about how to prepare ahead of time, and I credit this forum and these wonderful people for my good outcome. You can include your family like I did by reading the threads and information to them, as they were comforted to hear from other patients and to have some idea about what to expect. Panic attacks and cold feet will be pretty common for you as you approach surgery, that is one thing as all share. But, just recognize that this is normal and keep searching for answers, someone will have "been there and done that" and help you through it. Research everything and get ready- Lisa
                Lisa age 47
                T curve 69 degrees
                L curve 40 degrees more or less - compensatory
                fused to from T-3 to sacrum
                anterior and posterior surgeries completed June 1, 2007
                pushing hard in recovery !!

                Comment


                • #9
                  I was also freaking out before my surgery...I think the months/weeks/days leading up to it were perhaps worse than the surgery itself. I just tried to keep busy. Usually I was fine during the day, but at night when I'd settle down, I usually had the breakdowns. I know my husband was nervous, but he was supportive. I was so concerned because my husband lost his first wife (to cancer) and I felt terrible for having to put him through this surgery, etc.

                  I think you should have your husband talk to other husbands whose wives went though this. Boachie's office gave me names and numbers of former patients who had a similar fusion.
                  Heather
                  Surgery date: April 20, 2004
                  Anterior/posterior surgery
                  Fused T-11 to L-5
                  Pre op lumbar curve: 70 degrees, thoracic curve: 42 degrees
                  Post op lumbar curve: 19 degrees, thoracic curve: 18
                  Surgeon: Dr. Boachie-Adjei
                  Had successful pregnancy and birth 2 years post-op

                  Comment


                  • #10
                    Your fears are very normal!

                    Dear Mish-P,

                    You wouldn't be normal if you did not have these fears, or your husband either. Our husbands have to be brave also even when they know it is the best. They do get worn out by us talking about it so much; even my kids did. They were also amazed at how much time I spent on this website reading or writing in but I am convinced that was the best thing I did in preparation for the surgery. I was very well prepared; there weren't a lot of surprises and I knew pretty well what to expect.

                    It really helps you to work out your anxieties on here. Keep writing to the other members who are having surgery about the same time as yours. Then afterwards, you can get back on and compare notes as to how you are doing. They will understand, even if relatives don't.

                    Seeing the size of your curves, I am amazed that you had not been referred to surgery sooner. I really wish that I had mine corrected at 37 instead of 47. Each year that goes by does more damage to your body from the scoliosis. The sooner it is arrested, the better your body can heal and recover plus you are avoiding future problems (SCIATICA, SI joint dysfunction, ddd, arthritis, etc. from the scoliosis).

                    not sure of the ages of your children, but you are investing in a better, healthier future which will also pay off for them.

                    Best wishes, can't wait to hear how things go!!

                    Deb
                    age 48
                    posterior surgery 7/24/06
                    for T72, L77 s curves
                    50% correction
                    DON'T WAIT TO GET STRAIGHT!!

                    Comment


                    • #11
                      MishP:

                      I know exactly what you are going through. I have 19 month old twins that turn 2 in November. My husband is terrified of this surgery and would do just about anything short of tying my up to put it off - even suggested getting pregnant again (Hey, Honey! Thantks, but I have TWIN TODDLERS to take care of now!!). How old are your children? My curves are not as severe as yours, but I want to get the surgery behind me while I am still somewhat young (for the sake of healing) and my curves as still pretty flexible. However, I am also terrified, have panic attacks at times and cry ar the drop of a hat...especially when I look at my kids photos in the NICU. THAT was stressful and painful enough, but I relive it all the time now when addressing my own mortality. Please, understand that I am not afraid of my mortality at all. I am afraid of not being with my husband and kids in the years to come. And, I can't communicate that to my husband as he would love to have another argument for not having the surgery now.

                      I love him deeply, and I understand his concerns (probably more than he does), but I truly believe that it is time and that I have made the right decision. I can barely keep up with my kids now as they scwerm in my arms and they are heavy, which makes it very painful to pick them up or hold them.

                      I want to give them a happy Mommyand not a miserable one. So, I am scared, but resolute. Good luck, and feel free to send me a PM if you want.

                      Ann
                      44 year old female
                      Surgery on Nov. 1, 2010
                      Dr. Darrell Hanson, Methodist Hospital
                      Posterior Only, 9 hours
                      Presurgical: T 61 Degrees, L 58 degrees, with 15 degrees of thoracolumbar rotation
                      Postsurgical: T 26, L 25

                      Comment


                      • #12
                        Just look at the support you have received. This site truly is amazing and we should all be so appreciative of the time everyone takes to help others.

                        I am like you, keep the pain mostly to myself. Nobody truly knows just how bad it is, I suppose it is me trying to protect them so they won't worry. I think it is important to talk to our spouses to help them cope. This is where this site has truly been a blessing. I will read things post op and share them with my husband. I feel the more informed he is the easier it will be for him. There are so many success stories that how could he help but feel enouraged about it.

                        Try to keep thinking of the positive, what you will be able to do afterwards. If you are anything like me the pain has limited your life and you get to the point you just acccept that. It shouldn't be that way. We are so lucky to live in a time where they can help to improve you life.

                        Good luck we are all thinking about you.
                        CarolS
                        68 degree right lumbar scoliosis, mild kyphosis at L1-2
                        Anterior/Posterior Correction, T8 to Sacrum, Sept 20th, 2007
                        Osteotomy March 20,2008
                        Thrilled with results!

                        Comment


                        • #13
                          Mish.... i am almost 55 now and it's been 2 yrs since my surgery. I wish i had had mine done when i was only 37.

                          Try to focus on the end result instead of the rough road you will have to travel to get there. You can do it!! And you have all these wonderful online friends to help you thru your hard times... We will be right with you.

                          (((hugs)))
                          JoAnn

                          Comment


                          • #14
                            Hi Mish,

                            I hear you!! The wait for this surgery was extremely tough and in some ways worse than the surgery itself. Your curves are very severe and I am convinced that surgery is the best option for you, now rather than later, and Dr. Boachie is the man to do it. He really is gifted. You are in the best hands possible! Of course this surgery hurts but that's what narcotics are for -- the right drugs really do make everything bearable.

                            Good luck and stay busy if you can.
                            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!

                              Thank you so much everyone. Your thoughts, advice and prayers are so helpful. Everyone is just so great here. I'm going to print this thread and refer to it everytime that I need that extra support.

                              My kids ages are 7 and 4 1/2. Only my 7 year old kind of has an idea that mommy will be gone for a couple of weeks. I worry about them and hope that it won't be too tough for them while I'm gone. Thankfully, my mother-in-law will be here and helping my husband and me out tremendously while I'm gone and during my recovery. She's really great!

                              I asked my husband if he'd like to speak with another husband who's been through this and he was not interested. He's a very stubborn guy and thinks that he doesn't need help at anything. So I guess he will deal with it in his own way.

                              Ann,
                              Looks like your operation is the week after me. So we will be going through the same thing at the same time. I'll be thinking of you too!

                              Thanks again everyone. You're awesome!
                              MishP
                              38 y/o
                              Diagnosed with Scoliosis at age 6 - Bracing didn't help
                              Brace off at age 12
                              Saw Chiropractor/massage therapist
                              Pre-op
                              Upper Curve - 115 degrees
                              Lower Curve - 85 degrees
                              9/18/07 Anterior/posterior surgery w/Dr. Boachie-Adjei
                              Fused T2-L3
                              Not sure of post-op correction

                              Comment

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