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10 year anniversary, saying "hi", and health update

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  • 10 year anniversary, saying "hi", and health update

    Hi from the past! I used to be very active on here but dropped out last year after some sadness in my life. I thought I would stop in and say hi since this is an important day to me and I was thinking about you all.

    TEN YEARS AGO today (May the Fourth be with me!) I had my spinal surgery. I had a slow recovery, and after 10 years I wish I could say I am back to "normal" but instead will say I am doing fine with my new "normal" - and am glad I had my surgery. Life offers many challenges and various paths we choose. The interesting part is how we can change our priorities and move on with new ways to navigate our days. A work in progress!

    Thanks to all who had an input on here with me over those years.
    My Charcot Marie Tooth disease is my main health issue now, even though the limitations from my scoli surgery are still present. I did get to go to one of the CMT Centers of Excellence in December for a full (10 hour) exam at the Univ. of Iowa CMT clinic. I will go back every year as this is a progressive disease. I have an axonal form (CMT Type 2) and it is autosomal dominant.

    That's enough about that. Just sending my best to you all and letting you know I'm still around. Take care -- Susie
    Last edited by Susie*Bee; 05-04-2017, 09:08 PM.
    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
    Hi Susie, glad you posted to let us know how you are doing on your 10 year anniversary, hope you keep posting. Be well.

    Dolores
    Dolores A
    June 4, 2009 Anterior L3 - S1
    June 8, 2009 Posterior T4 - Pelvis
    Mark Agulnick, MD FAAOS
    NY Spine & Scoliosis Center

    Comment


    • #3
      Hello

      Great to hear from 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


      • #4
        Hi there! So glad to hear from you! I also have had "challenges" and continue to try to find a quality of life. I send you my love and my gratitude for all of the awesome support that you have given me!
        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


        • #5
          I seldom check in to the forum now that I am 6 years post-op. I probably checked for posts daily for the year before and several years afterwards. If one posted a question, there were several answers the same day. I don't know what I would have done without this forum. It doesn't seem to be as "active" now. Anyway, I am so glad I didn't miss your post. Congratulations on your 10 year anniversary on the 4th. I am sorry you are having other health issues. Good to hear from you.
          Karen

          Surgery-Jan. 5, 2011-Dr. Lenke
          Fusion T-4-sacrum-2 cages/5 osteotomies
          70 degree thoracolumbar corrected to 25
          Rib Hump-GONE!
          Age-60 at the time of surgery
          Now 66
          Avid Golfer & Tap Dancer
          Retired Kdgn. Teacher

          See photobucket link for:
          Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
          Before and After Picture of back 1/7/11
          tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
          http://s1119.photobucket.com/albums/k630/pottoff2/

          Comment


          • #6
            Hi Suzie Bee

            Congratulations on 10 years! Thanks for all the great support through the years....

            I see the IT people got the phishing thing figured out....Congratulations to them also! That kind of stuff is worse than scoliosis surgery.

            Its such a shame that these things have to happen especially on a medical support forum.....

            Good to be back


            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


            • #7
              Hi Susie*Bee,

              Great news that you are at 10 years and so nice hearing from you. :-)

              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


              • #8
                Sad update

                The day after I posted this thread my youngest daughter gave birth to her first babies - twins - prematurely, at 24 weeks. They were helicoptered to an NICU hospital and we traveled to TX to be with them. The pregnancy had been deemed extremely healthy, the babies were doing great, my daughter had been declared very healthy and in tip-top shape, but these little ones (a boy and a girl) somehow did not wait till the end of August. They were born May 5. Under normal conditions with the 24 week age, there was every chance they could survive even though they were very tiny, but both developed brain bleeds and Jonathan died two days later, while Lily held on for 12 days and had given us all every hope that she would survive. This daughter and son-in-law went home after our 2.5 week time at the NICU to an empty nursery, and broken hearts that had been so filled with excitement and dreams of the future.

                I have now held 3 dead grandchildren in my arms, seen them in their caskets, watched as the dirt filled up their gravesites. Last year's baby death was a 36 week perfectly formed, 5 lb baby girl who was strangled by her umbilical cord. I now have a 3 year old granddaughter who play-acts with her doll "my baby died, my baby is dead" - and after all, she has been to 3 baby funerals -- her own baby sister's and now her 2 cousins'. And my grandsons (cousins), just turned 8, have had such grief also, and parents change with heartbreak. My "little girls" and their husbands - and the three grandchildren, have been through so much. I have seven grandchildren in heaven now and my heart is broken for my family. Our lives are totally different and I wish with all my heart I could switch on the "rewind" and go back a few years. Instead, I weep every day.

                Things such as scoliosis, my surgery and how I'm doing after it, my Charcot Marie Tooth disease progression, and all the rest of this just pales in the overwhelming sadness I feel each and every day.

                I never got to read the responses from some of you until now and I thank you for your kind notes. I hope you are all getting along ok with whatever state you're in with scoli. You have been an important part of my life in previous years and I still consider many of you as my "friends." Signing off for now, your scoli sis, Susie
                Last edited by Susie*Bee; 07-08-2017, 01:00 PM.
                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


                • #9
                  Susie Bee, feeling sad and overwhelmed by your posting. I cannot begin to understand your saddness. I cannot wrap my head around all that has happened to your family. I appreciate your sharing with us. You and your family are in my thoughts and prayers.
                  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


                  • #10
                    Huge, unfathomable losses. Too much. I am so sorry, Susie Bee. {{Susie Bee}}
                    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


                    • #11
                      Thinking of you...

                      So sorry Susie, it sure had to be very hard to share this with us, but know that there are many prayers going up for you and your scoli family.
                      Dolores A
                      June 4, 2009 Anterior L3 - S1
                      June 8, 2009 Posterior T4 - Pelvis
                      Mark Agulnick, MD FAAOS
                      NY Spine & Scoliosis Center

                      Comment


                      • #12
                        Susie I am so sorry to hear this sad news, I can not even immagine how you must feel.
                        Live certainly has thrown you more then your share of sorrow.
                        My thoughts are with you and your family.
                        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


                        • #13
                          Susie Bee,

                          I've been following this forum for many years, though I've never had scoliosis surgery. I remember when you had your surgery and the preparation for your daughters' weddings. You worked so hard to be able to be as well and healthy as possible and fullly present for their celebrations as you could be including surgery. We do everything we can for our children and grandchildren and to face the kind of losses you have all sustained is unimaginable to me. I am so very sorry for your tremendous loss and hope you and your family can find comfort in the love you share together.

                          Warmly,
                          Deborah

                          Comment


                          • #14
                            Susie Bee,
                            Please accept my thoughts and prayers for you and your family at this terribly sad time.
                            Karen

                            Surgery-Jan. 5, 2011-Dr. Lenke
                            Fusion T-4-sacrum-2 cages/5 osteotomies
                            70 degree thoracolumbar corrected to 25
                            Rib Hump-GONE!
                            Age-60 at the time of surgery
                            Now 66
                            Avid Golfer & Tap Dancer
                            Retired Kdgn. Teacher

                            See photobucket link for:
                            Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
                            Before and After Picture of back 1/7/11
                            tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
                            http://s1119.photobucket.com/albums/k630/pottoff2/

                            Comment


                            • #15
                              Susie Bee I pray that you heal from so much heartbreak.
                              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

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