Results 1 to 14 of 14

Thread: To my friends/scoli bros and sisses

  1. #1
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,978

    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"...)
    67 and plugging along...
    2007 52į w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15į
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show 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. #2
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,245
    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

    December 8, 2014 - Another Broken Rod Surgery

  3. #3
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,163
    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."

  4. #4
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    804
    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
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    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

  5. #5
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    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

  6. #6
    Join Date
    Mar 2010
    Posts
    2,755
    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!

  7. #7
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,919
    I am so sorry Suzie, I donít 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 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF 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

  8. #8
    Join Date
    Jun 2006
    Location
    Texas
    Posts
    137

    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!

  9. #9
    Join Date
    Jun 2013
    Location
    Muskoka, ON Canada
    Posts
    98
    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

  10. #10
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,978
    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
    67 and plugging along...
    2007 52į w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15į
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show 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

  11. #11
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,919
    I know because I am also lost from grief.....and keep everyone at arms length these days. (I donít 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 donít understand. Our physical afflictions are secondary now, they donít 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 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF 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

  12. #12
    Join Date
    Aug 2009
    Location
    St. Louis Missouri
    Posts
    50

    Smile

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

  13. #13
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,572
    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 Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe 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 Spinal Cord Injury T4,5 sec to PJK
    2015: Revision 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

  14. #14
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    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.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •