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

  1. #46
    Join Date
    Apr 2012
    Location
    San Jose, CA
    Posts
    570
    Susan, it's not a typo, you're going to be in the Bay Area to see Dr. Hu? I would love to see you! I can stop by where you will be staying. Hope you don't have to wait so long. Waiting sucks!
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  2. #47
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,534
    Susan, I hope your date gets bumped up soon...

    Hang in there

    Ed
    49 yr old male, now 58, the new 53...
    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

  3. #48
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Linda x2 and Ed, February....while I could probably make it physically until then, I wonder about making it mentally for 3 more months. I cannot imagine that the dysfunctional pulling is not providing some harmful outcomes for my back. Additionally, I spend a lot of time being inactive in my wheelchair. My daily walks are suspended until after my surgery.

    Irina, yes I hope that we can get together. I miss you! I will try to call you today. I have not purchased plane tickets yet and am not certain whether we will just make a long day trip and fly back home right after the appointment, or spend the night in the Bay area. Dr. Hu and her PA are being very accommodating for me. We finally hooked up "Care Everywhere", an electronic medical files communication mechanism this last week. I had planned to return to see Dr. Hu for my 2 year appointment.....but I had my 3rd surgery on my anniversary of my first surgery. Sorry, that I have not been very good about keeping up with friends, especially you.

    I have a fear of going back to complete paraplegia again. If that happened, I would definitely need a mental health consult to say the least. It seems over the top, but I will ask whatever surgeon works out to make sure that the neuro monitoring system is set up well and that they put on the best tech to watch it during the surgery.

    I am becoming a less tolerant disabled person. Part of my SCI is urinary incontinence. I also walk better than I can stand (I always need to use crutches). A little known ???law, is that disabled people do not need to wait in line at the bathroom, but can go in and wait by the handocapped stall. That is especially important for me as I can't stand in lines and the longer that I wait to use the toilet, the more likely that I am to be incontinent. It seems that I go through a lot of sanitary supplies each month. Thank goodness for Costco prices! I also have a lot of problem flushing toilets in public because i cannot get my leg up high enough to trigger the kick stand flushing mechanism. I also cannot walk with crutches fast enough between light changes downtown and am afraid that I will be hit by a car after the light changes. My brother says that I should put reflective tape up and down my pants legs so drivers can see me better at night. I am also frustrated that people sometimes will just watch me struggling to pick up my crutch on the floor in a cafe or trying to open a door. If I cannot find disabled parking, I just leave and do not accomplish my errand. Enough regrets and stories of what I cannot do. About 4 months ago, I thought that I had turned the corner mentally and decided that I would focus on what I "can do" rather than what I "cannot do". I am not there now.

    My topic of conversation with most friends is, "How is your back doing?". I am tired of updating my disability story.

    I truly feel for you, Linda B with your 3 years of Sagittal imbalance....let alone the pain that you had.

    My life is like an airplane in the holding pattern continually circling the airport waiting to land.

    I am genuinely happy for those of you that have had surgery and are doing well. Yet, I am very jealous that I pulled the short straw in scoliosis surgery. Why me? .....why not me?

    Broken Susan
    Last edited by susancook; 11-15-2015 at 07:01 AM.
    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

  4. #49
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    758
    Susan,I don't know what to say. I wish you peace and better health. With the hope that a better timeline will open up 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. #50
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Susan- sending love and prayers. I am so glad you feel you can share with us ALL of your thoughts. Just think if you (and Linda, Melissa, Jackie and others) didn't discuss your difficulties, others reading on here would think nothing about signing that line for surgery, even if they are not having challenges and definite needs for it. For a couple of years the posts were all wonderful and positive and with super quick recoveries-- and I could not understand what had happened. This surgery is not a promise of no problems or pain. It opens up all kinds of possibilities... And you, unfortunately, are one of the people profoundly impacted.

    You have been a champion of positive thoughts, but it's impossible to hold up forever with circumstances such as yours. You have every right and need to grieve and then, knowing you, I expect you will move on. We will remain steadfastly your support group.

    I sometimes wonder who in the heck engineered some of those public disabled bathrooms. They do not help at all. You can't reach the TP w/o doing contortions, the toilet is regulation height instead of the 17" (or whatever) that it should be, and yes-- how in tarnation can some people flush the toilet? I was in one of those foot ones not long ago. That's high up and if there hadn't been a bar to hold onto, it just wouldn't have worked. At all. I did not know that about the disabled stalls and priorities in line. It seems most of the time I am somewhere, there are young kids in them goofing off.

    I am praying you get moved forward on your date. Hugs, Susie
    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

  6. #51
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525

    Surgery #4 scheduled

    Dr. Hart's surgery scheduler just called. There was a cancellation THIS WEDNESDAY 18 NOVEMBER, so I will have Stage 1 done then. Stage 2 is 1-3 weeks out.
    This is not my first rodeo. I am ay peace with this. Thank God, I just had a pedicure done, bright red!
    Going to the Chinese Garden to relax....few errands.....preop appt tomorrow with tons of question, shower with anti-bacterial soap....show up Wednesday buck naked with my insurance card in hand. It's gonna work.

    Broken 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

  7. #52
    Join Date
    Apr 2010
    Location
    Easton PA
    Posts
    182
    Good Luck Susan. You are in my thoughts and prayers. Regards, Lori
    Lori in PA, 52 yrs. old
    T54/L72
    Surgery 6/7/11, T3-S1, all posterior, with pelvic anchors
    Gained 2 inches!
    Dr. Boachie, HSS, NYC
    12/10/13 Hardware Removal for infection
    Lost 2", gained PJK!

  8. #53
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160
    Susan, I am so glad this worked out. You will make quite a splash when you show up naked, I just know it! Glad your sense of humor is still intact.

    Dr Hart will get you all fixed up.
    Gayle, age 49
    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)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

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

  9. #54
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Ditto here. Hooray for the cancellation! Your bright red nails will draw attention to your feet... (if that's all you're wearing!) But not really. Praying for 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

  10. #55
    Join Date
    Dec 2011
    Location
    Heidelberg, Germany
    Posts
    47
    Susan, we talked so long ago, it seems. I am excited for you that you got an earlier date; we are all thinking of you. Nothing sounds exactly right except perhaps to let you know we care and wish you every success possible. It's your time to heal!
    Emily, 43
    approx 50 T, 36 T/L

  11. #56
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    758
    I am glad you got the call. We all are praying for you. You will be all fixed now!
    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

  12. #57
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,534
    That was quick Susan......Will it be the anterior first?

    Ed
    49 yr old male, now 58, the new 53...
    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

  13. #58
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    758
    Hope all goes well tomorrow. I will be thinking of 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

  14. #59
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    758
    Susan please let us know how you are doing. I think you are between things but I am thinking of 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

  15. #60
    Join Date
    May 2010
    Posts
    345
    Susan, I just got back on the forum and found out that apparently you had surgery for your saggital imbalance. (The first half anyway) I am pulling for you Susan, and so hope this went well!!! You know I have to have revision number five. I am really starting to bend because of the broken rods!! When you're up to it, let us know how you're doing. Gentle hugs!! 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

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