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To my friends/scoli bros and sisses

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  • To my friends/scoli bros and sisses

    I think I have come to a point where I will at least take a long break if not just plain leave. I didn't want anyone (would there be?) wondering what happened to me. I am griefstricken with the losses within a week of each other of my father-in-law of almost 44 years quickly followed by the devastating death of my daughter's 35th week of pregnancy baby girl. Two funerals. Two burials. (And to watch your granddaugher's casket being covered with dirt is beyond words.) Too overwhelming. A baby's funeral, when you have held the little baby in your arms and rocked her, with no breath, is a cruel, heart-breaking, and difficult thing to deal with. Watching your own daughter in a deep, dark area is dreadful. Our lives will never be the same. We have had 8 grandchildren, but five are in heaven. This burden is too much. My heart is broken for my daughters and sons-in-law in so many ways, and for my husband and myself. My scoliosis and my CMT are nothing compared to what I am going through now. Thank you all for the past seven/eight years of fellowship and insight. May you all do well adjusting to life with scoliosis. Love, Susie

    BTW- this last issue of JAMA had articles concerning pain that may be of interest to some of you. (One last little tidbit-- mostly because I had ended with "adjusting to life with scoliosis"...)
    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

  • #2
    Susie,

    I don't know what to say except that I will pray for you and your family

    I am so sorry for your losses

    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    April 21, 2020- another broken rod surgery

    Comment


    • #3
      Take care of yourself, Susie*Bee. These losses are huge.

      I will hope you come back here some day when the time is right.

      Best regards and love,

      Sharon
      Sharon, mother of identical twin girls with scoliosis

      No island of sanity.

      Question: What do you call alternative medicine that works?
      Answer: Medicine


      "We are all African."

      Comment


      • #4
        My heart goes out to your family. It is a real difficult time for you. You remain our friend and take care of yourself. Come back when the time is right for you
        T10-pelvis fusion 12/08
        C5,6,7 fusion 9/10
        T2--T10 fusion 2/11
        C 4-5 fusion 11/14
        Right scapulectomy 6/15
        Right pectoralis major muscle transfer to scapula
        To replace the action of Serratus Anterior muscle 3/16
        Broken neck 9/28/2018
        Emergency surgery posterior fusion C4- T3
        Repeated 11/2018 because rods pulled apart added T2 fusion
        Removal of partial right thoracic hardware 1/2020
        Removal and replacement of C4-T10 hardware with C7 and T 1
        Osteotomy

        Comment


        • #5
          omg Susie im really sorry for your and your familys loss
          Kara
          25
          Brace 4-15-05-5-25-06
          Posterior Spinal Fusion 3-10-10
          T4-L2
          Before 50T
          After 20T

          Comment


          • #6
            Susie,

            You have been one of my biggest supports on here and I hope you stay long enough to read these heart-felt thoughts from everyone else. My niece, who I am very close to, lost her baby boy at 35 weeks, too, due to medical neglect. I was on vacation when it happened so I couldn't get to her. He was beautiful as I'm sure your granddaughter was, too. Death is not fair and unfortunately it stings us all. It seems especially unfair when it is children and young people. My hubby lost his twin sister and his dad within two weeks of each other when he was only 11 years old. He's the one who found her. It affects him to this day. I've also lost six of my nine babies. There is a void that always remains. But we have to keep on living and you can be of great support to your family and them to you. Your daughter especially needs you right now. Take your time to grieve with them and them with you.

            I'm only sharing this to let you know I understand first-hand.

            You are well loved here and will be missed. I hope that you will come back when your heart has healed enough that you feel you can breathe again.
            My heart goes out to you. I wish I could hug you and let you cry on my shoulder. Just know that's what I'm thinking, okay?

            Rohrer01

            P.S. If you read this, please send me a PM so I know you've seen it. I will give you my e-mail if you want to stay in touch. If not, that's okay, too.
            Be happy!
            We don't know what tomorrow brings,
            but we are alive today!

            Comment


            • #7
              I am so sorry Suzie, I don’t what to say other than that its ok to be lost for awhile, this seems to happen.....and its hard to say the right things, but we are always here to listen.

              Do try to take care, and post once in a while.

              Your friend

              Ed
              49 yr old male, now 63, the new 64...
              Pre surgery curves T70,L70
              ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
              Dr Brett Menmuir St Marys Hospital Reno,Nevada

              Bending and twisting pics after full fusion
              http://www.scoliosis.org/forum/showt...on.&highlight=

              My x-rays
              http://www.scoliosis.org/forum/attac...2&d=1228779214

              http://www.scoliosis.org/forum/attac...3&d=1228779258

              Comment


              • #8
                sympathy

                SuzieBee- you have always been so kind and understanding, I am shocked and so sad to hear of your recent losses, especially the loss of your grandbaby. muy prayers will go with you, and for your daughter to help her endure this horrible loss. God bless you and your family. Jamie
                57 years old.
                thoracic curve 68 degrees
                lumbar-sacral curve +/- 41 degrees
                Cspine C3- C7 fusion Nov. 2011 <done! success!!>, then scoli surgery T2- L4 or maybe to sacrum.
                Discogram/ myelogram pending. Surgery to be scheduled, maybe fall 2015. <scared but I know this is not going to get better>
                THANKS TO EVERYONE FOR SHARING EXPERIENCES AND KNOWLEDGE!

                Comment


                • #9
                  Susie, so sad to hear of your loss. My thoughts are with you and your family.
                  Please take care and hope to hear from you when you are ready to come back.
                  Marianne
                  rotoscoliosis, subluxation and spinal stenosis
                  Surgery April 15, 2015 at age 67
                  T11-L5
                  Decompression with multiple discectomies
                  Concord cages @ L2-3, L3-4, L4-5
                  Osteotomies and local bone grafting
                  Revision Feb.22, 2018
                  Replaced rods
                  Took out L5 disk to free up nerves
                  Used BPM to help with fusing
                  Fused T10-S1 with screws in pelvis

                  Comment


                  • #10
                    Thank you, dear friends, for your heartfelt messages. They are a balm of sorts to an aching soul. I appreciate your friendship and your caring so much. This has always been my favorite spot online to rest and relate, because I have always considered you as my scoli "family." Someday I will try to join in again. Thanks for the support and encouragement. Yes, Ed, "lost" is a good way to describe where I'm "at" right now. Love, Susie
                    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


                    • #11
                      I know because I am also lost from grief.....and keep everyone at arms length these days. (I don’t know if this is right or wrong, maybe just the result of having my soul being chipped away) I feel like Paul Edgecomb from the Green Mile, but then all these younger people approach with eagerness and enthusiasm that offers rejuvenation.....Even the simple questions (like, left or right) need thought, its like this prying message from above that says keep going.....All my elder mentors are dying, all the ones that rode the same train. I guess its my turn to be the engineer in life now and drive the train regardless of the pain.....and try not to be overly serious since the young ones don’t understand. Our physical afflictions are secondary now, they don’t matter much if our hearts are broken. I am hoping our hearts heal at some point....I think they will.

                      Hang in there Suzie

                      Ed
                      49 yr old male, now 63, the new 64...
                      Pre surgery curves T70,L70
                      ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
                      Dr Brett Menmuir St Marys Hospital Reno,Nevada

                      Bending and twisting pics after full fusion
                      http://www.scoliosis.org/forum/showt...on.&highlight=

                      My x-rays
                      http://www.scoliosis.org/forum/attac...2&d=1228779214

                      http://www.scoliosis.org/forum/attac...3&d=1228779258

                      Comment


                      • #12
                        Ed. Very nice words. You must be a writer (or should be).

                        Comment


                        • #13
                          Susie, I am overwhelmed with sadness and want to give you a big hug. I cannot imagine what you are going through, but I do know that you will get through this. Your daughter needs your love and reassurance.

                          You have been such a mentor and support to me when I needed it. I wish that I could help you now. Please know that you are in my thoughts and prayers. There is a booklet, "When Saying Hello Means Saying Goodbye" which was helpful to many of my patients who experienced a newborn loss. Send me a PM if you are interested with your address and I will track down a copy and send it to you. It was written by one of my patients.

                          Hugs, 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

                          Comment


                          • #14
                            Dear Susie Bee,
                            I haven't been on the forum for months and for some reason I was compelled to sign in. Yours was the first post I saw. Words cannot express the sadness I feel for you and your daughters, son's in law, husband and grandchildren. Having had three miscarriages, then the birth of my daughter only to lose her after a six year illness at the age of ten, I know only too well how you feel. To lose a child is the saddest thing anyone can go through. May your faith in God comfort you and bring you back from that dark place over time. Hugs and prayers to you and your family.
                            Love, Sally
                            Diagnosed with severe lumbar scoliosis at age 65.
                            Posterior Fusion L2-S1 on 12/4/2007. age 67
                            Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
                            Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
                            New England Baptist Hospital, Boston, MA
                            Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

                            "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

                            Comment

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