Page 2 of 8 FirstFirst 1234 ... LastLast
Results 16 to 30 of 109

Thread: HELP!!! Lost my sagittal balance.....did anyone find it?

  1. #16
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527
    Thank you Melissa and Gayle for your support.
    Mark and I attended a birthday party for a friend last night. I hate trying to talk with people standing up since I cannot see them without leaning back and then tilting my head back. My back starts to ache in a short amount of time with that posture and then I need to sit down. Dr. Hart said to "limit my activity" and that is very difficult for me. I need to keep up my strength in my legs from the spinal cord injury.
    Mark's open heart surgery is tomorrow and I need to focus on him.
    I need a break....I need to get back to my active life.
    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 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at 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 + prayer

  2. #17
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    I will keep both you and Mark in my prayers
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  3. #18
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162

    Best wishes tomorrow

    Dear Susan,

    Best wishes tomorrow, I know you are scared for Mark but he is in excellent hands.

    Please let us know how it went when you can. I'll be thinking of you both.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  4. #19
    Join Date
    Jun 2013
    Location
    Muskoka, ON Canada
    Posts
    77
    Best wishes with Mark's surgery Susan. I will be thinking of you both.
    Can't believe you have another broken rod. What's that saying if it wasn't for bad luck I'd have no luck at all?
    Maybe your surgeon could try stainless steel this time, my surgeon feels it is stronger then titanium. Drawback is your MRI's don't read too well. In my case he was not worried about that.
    Sending you love and hugs Susan, try to stay strong.
    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

  5. #20
    Join Date
    May 2010
    Posts
    345
    Susan,
    I'm thinking of you today as you are going to be on the other end of the
    the surgery( the waiting part)I hope your husband Mark is out of surgery by now and all went well.
    I think how difficult this must be for you with all the issues you are having. Life just doesn't seem to give you a break!!!(anytime soon). I hope once your home you will have help to do what needs to be done
    with Marks recovery. Just want you to know I'm thinking of you. Praying for you both~~~ Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  6. #21
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162
    Dear Susan,

    I'm glad surgery is over and went well. Go home and get some rest tonight, this must have been a really long day for you. The ICU nurses will take good care of him.

    Thinking of you both.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  7. #22
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527
    Thanks for the well wishes. When I left, Mark was extubated and having an assortment of irregular heart beats. Al limbs moved and he replied "I love you" back to me. I melted.

    I am exhausted and in pain. One interesting side note from having dual broken rods: my hips now swish when I walk!

    L Thoracic pain at scapula level and sacral pain. I see the pain management doctor on Friday.

    Susan with a sexy swish
    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 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at 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 + prayer

  8. #23
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    Susan I am thinking of both you and your husband. Sending healing thoughts.
    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

  9. #24
    Join Date
    Dec 2013
    Posts
    39
    Susan,

    I suspect that many of us are wondering (and hoping for some good news). How are you and Mark doing?

    mark

  10. #25
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    Hi swishy Susan, even with all of these obstacles you bring joy to us!
    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

  11. #26
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    A resounding "Amen!" to that, Jackie. Susan- each day I have opened up this thread and each day I have been at a loss of what to say. You are my dear scoli friend and I am numbed by the unfairness of the continued problems you have experienced. And then I see (a few) others that continue to have problems also. My heart goes out to all of you beset with continued complications, and this is exactly why no one should ever take this surgery lightly. I know you never, in your wildest dreams, thought your road would lead in this direction. My thoughts and prayers are that this next surgery will see you turning that big corner and you will begin your way to a life that is acceptable to you. One that will allow you to emerge as the hero on the outside as well as the one we have witnessed on the inside. You are indomitable in spirit, face your adversary with tenacity, and your "presentation" has always been one with fighting the enemy with a source of super strength and with humor as your accomplice. You are a winner. Keep hanging in there. We love you. Hugs to both Mark and you.
    66 and still heartbroken...
    2007 52 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 15
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  12. #27
    Join Date
    Mar 2010
    Posts
    2,755
    Susan,

    I hope your hubby is doing well. Were they able to go between the ribs or did they have to do a midline incision through the sternum? They have a new technique at our heart center where they don't crack the chest anymore. My step-dad had to be opened as it was a six-way. It's amazing what they can do now days.

    I talked to my physiatrist/muscle specialist about my upper scapula pain and how my neck hurts by the end of the day. He prescribed me a semi-hard neck brace. It's made of a stiff foam material but also has hard plastic support. The orthotist was able to shave some spots down that put too much pressure on my collar bones and heat and mould the plastic in the back to support my head. I can tighten it as tight as I want, unlike the soft collar, because it has a tracheotomy cut-out and doesn't feel like it's choking me. I had INSTANT relief from those tired muscles. It's only for occasional use, but it might be worth a try for you. You can't turn your head or look up and down, but the trade off is worth it when my neck and shoulders are hurting. It couldn't hurt to ask???

    I'm so sorry for your sacral pain. That is also one of my main areas. The pain goes all the way down both legs to my feet now. Fortunately for me the SI injections are still giving me some relief. Is there some kind of lumbar brace that goes above and below the broken rod that your doctor will prescribe for you until you can have surgery. These guys in orthotics are amazing. I have an SI belt that helps some when it's really bad, but I really hate wearing it. I'm wearing a lidocaine patch 24/7 over my sacrum and that has actually helped. I was waking up crying and unable to move before. But, I've found that it only works for me if I leave it on. If I do the 12 on and 12 off like you are "supposed" to do, it doesn't work. I told my doctor and he's totally fine with me wearing all the time.

    Just some ideas to throw your way for some temporary things to take the edge off until you can get this fixed.

    Take care,
    Rohrer01
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  13. #28
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,557
    Susan

    Hoping things are ok right now.....

    I have neighbors that are in their mid eighties that have been in and out of the hospital back and forth over the last few years. Spine surgeries done on Bob, and Dina with all sorts of vein surgeries in her legs. In and out of the hospital every month or so, and they seem to take all of it in stride like its nothing, its just a little visit to the hospital......I find it amazing on how positive they are and how they act like its nothing. Dina called me once, Ive been in the hospital for 2 weeks now, its nothing, I will be ok. Can you bring me a Wendys hamburger? Oh man.....I dont want to get caught red handed with this stuff....

    I have to admit, I am guilty of sneaking things in like hamburgers and prime ribs and loaded baked potatoes. This I have done, and walking right by the nurses station and with a guilty face for some reason!

    Since youre a nurse, is this something you guys watch out for? (smiley face)

    Ed
    49 yr old male, now 59, 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

  14. #29
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527

    4 weeks between surgeries??????

    Thanks everyone for your well wishes to Mark and me. He came home on Friday night and is trying to sleep in the recliner in the living room.

    Dr. H called when I was sitting in the hospital parking lot on Thursday and patiently answered my questions as best that he could. He proposes a 2 day surgery, ant/lateral/posterior with repair of lumbar non-fusions and some new thicker rods. He thinks that me lumbar instability is caused by my infection. He mentioned 1-4 weeks between surgeries. I almost fell out of the car when he said "4 weeks". I called her scheduler and told her that I wanted the 1 weeks between surgeries. 4 weeks? Help me understand that time frame!!!!!!!!!!!!!!!!!Looks like probably a January revision surgery.

    Swingin' 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 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at 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 + prayer

  15. #30
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Quote Originally Posted by susancook View Post
    Thanks everyone for your well wishes to Mark and me. He came home on Friday night and is trying to sleep in the recliner in the living room.

    Dr. H called when I was sitting in the hospital parking lot on Thursday and patiently answered my questions as best that he could. He proposes a 2 day surgery, ant/lateral/posterior with repair of lumbar non-fusions and some new thicker rods. He thinks that me lumbar instability is caused by my infection. He mentioned 1-4 weeks between surgeries. I almost fell out of the car when he said "4 weeks". I called her scheduler and told her that I wanted the 1 weeks between surgeries. 4 weeks? Help me understand that time frame!!!!!!!!!!!!!!!!!Looks like probably a January revision surgery.

    Swingin' Susan
    Susan...

    When we have someone who is medically frail, they are sometimes scheduled with a month or more between surgeries, to give them time to completely recover. The one good thing about that scenario is that the patient gets to go home and lead a normal life before it's destroyed again. ;-) Most others have 1-4 days in between.

    Hope you can get a shorter schedule figured out!

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

Posting Permissions

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