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

  1. #31
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Linda, thanks for responding. The 4 weeks sounds reasonable for a frail little old lady who is inactive and eats crackers and tea. However.....that is not moi! I did have 3 days between my 1st and 2nd phases of my first surgery and I remember little about the in between days. I did have a very low PO2, as I recall about 70% just before the 2nd surgery which I attributed to an overload of fluid with subsequent wet sounding lungs. I never smoked nor had a lung problem.

    I just want my life back. I am a nurse practitioner! I take care of others and have so much more that I want to do with my life. I am currently writing grants for projects in India and CamBodie with plans to return to Fiji in 3 years for another women's health care project. I have worked very hard in rehab for the past year.

    I remain optimistic about my future.
    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

  2. #32
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    Susan,
    I think about you, Gail, and Linda (BabyBoomer) daily and hope that all of you eventually have a life with normal activities and no pain. Susie Bee's previous reply said it all.
    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/

  3. #33
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    758
    Susan your determination is so strong. I admire you. Every time I want to get angry about problems I think of you and how amazing you are. Being out of balance is horrible. While I was out of balance the other way from my trapped shoulder blade and I was struggling. It zaps your strength. After my scapulectomy I am back in balance and it is wonderful. I struggled with this and have not had near the challenge you have had. I wish I lived near you and we could be visiting friends. God bless 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

  4. #34
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Jackie: thanks for your support. I am tired of being in pain and hoping that each surgery is my last. I need a break!
    Do wish that we could meet and have lunch together.
    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

  5. #35
    Join Date
    Mar 2008
    Location
    Chicago-"land"
    Posts
    157
    Quote Originally Posted by susancook View Post
    About 2 weeks ago, I noticed that I was slumping forward and that I needed to crank my neck back far to see. A few family members said that I "looked different". In the morning, at first I walk straight up with my head held high. Shortly thereafter when I walk, I begin to slump over and after a while I am looking at the ground when I walk.

    Has this happened to anyone else....slumping over or increasing your sagittal imbalance in such a short amount of time?

    HELP!!!!

    Susan
    Hey Susan, mine was gradual - it is a result of L1/L2 vertebra that have moved forward and to the side, not a broken rod....but I was pretty much like that out of the gate after my first surgery; it's just progressed.

    You have had a tough time of it - prayers. Also, have noted that we are at Holiday time - I wanted a Nov/Dec surgery and am put off until January - the reason? Christmas. By the time I have another CT myelogram (sp) 6 weeks before surgery, it can't be squeezed in. So, it's January or later. In the meantime I am allowed NO pain meds so what I receive in the hospital is most effective (or so I'm told); and I can get off them easier.

    Has anyone (as I have) ever wondered about the manufacturers of these rods? Like Medtronics, etc. has anything to do with these issues? I'm adding this to my list for next weeks appt.

    It would be interesting to do a survey or have your surgeon weigh in on why he chooses one brand over another.
    Last edited by Chihuahua Mama; 10-30-2015 at 12:57 PM.
    Susan
    XLIF/Posterior Surgery 6/16/08. Fused T10-L5 in CA by Dr. Michael Kropf (don't go there unless it's simple, I hear he's at Cedar's now). Very deformed, had revision w/5 PSO's, rods from T-3 to sacrum including iliac screws, all posterior, 5/23/16 with Dr. Purnendu Gupta of Chicago.


    Owner of Chachi the Chihuahua, So Cal born and bred, now a resident of 'Chicagoland' Illinois. Uh, dislike it here....thank God there was ONE excellent spine surgeon in this area.

  6. #36
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Thanks, Susan. I was told by he scheduler that she could probably schedule in January although she has not confirmed it yet. I also want to schedule when Dr. H will not be on vacation after my surgery. Having wprked in hospitals, i do know that staffing is sometimes light over the holidays.

    I went to warm water pool exercises yesterday and was in a lot of pain last night. The exercises were gentle and I was surprised that it hurt so much.

    I am limiting opioids, but unfortunately i have headaches that require pain meds.

    Just when I thought that I could get on with my life....more two steps forward and ten steps backwards. I am eating the words that I said to Irina, "I'm really glad that we are not in the revision part of the forum". Famous last words. My brother frequently says to me, "it is what it is". I have always done well through the surgeries, it is the spinal cord injury that is truly limiting for me. I still have limited sensation from below my breasts and fatigue in walking any distance. The Physiatrist said that 90% of the strength post SCI comes in the first year, and 10% in the second year. So.....this is "what I got".

    Hoping that you have a comfortable holiday season!

    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. #37
    Join Date
    Apr 2012
    Location
    San Jose, CA
    Posts
    570
    Hi Susan,

    I remember those words... I read this thread every day, but do not post because I just don't know what to say... I am thinking about you often.
    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

  8. #38
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Quote Originally Posted by Irina View Post
    Hi Susan,

    I remember those words... I read this thread every day, but do not post because I just don't know what to say... I am thinking about you often.
    One of the BIG negatives of not going back to California, is not getting together with you and Dave when I would come back for check-ups! I miss you a lot. Thanks for your thoughts. I will be OK....some day!

    Hugs to you, Ever-forward-leaning 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

  9. #39
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160
    Hi Susan,

    I also think of you every day, and I feel for you. I truly understand and can empathize because I was just in your shoes in the agony and devastating reality of suddenly broken rods. It is an unbelievably tough and discouraging situation to be in.

    I know you are working with Dr Hart's scheduler to look for a suitable surgical date. It's so tough for them to line up all the important parties on the same day. It was mental and frequently physical agony for me to wait also. I recently realized that I lived the nightmare of broken rods for exactly 2 months, with the main delay being actual X-ray confirmation of the breaks.

    Hang in there, take it easy on yourself, and know we are here to wait with you. I am confident you will get fixed and on to the road to recovery.
    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

  10. #40
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    758
    Susan I am still thinking of you and your struggles. I hope the new year is so .such better for you. I see my spine surgeon tomorrow and I can't wait to hear his comment on my shoulder being back in place. And with that the balance in my spine is amazing. I have not felt in balance for 4 years even though all the X-rays showed that I was. We need him to check a cervical nerve because I keep setting it off. But I am balanced and regaining arm movement. It is rough not being able to use the arm for support. For my right shoulder I have to put that arm in a sleeve first but for my spine I need to put the left arm in first. Such a problem and being shirtless isn't an option.
    Take care Susan.
    Last edited by jackieg412; 11-12-2015 at 07:05 AM.
    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. #41
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Jackie, What's wrong with being shirtless?
    Thanks for your support. I will survive this latest setback. I hope to have a surgery date soon.
    I am so glad that you found the answer to your shoulder problem.
    Take care, 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

  12. #42
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    758
    Here in Illinois today if you are shirtless , you will be really cold. We are having a huge wind event. That on top of the fact I live just south of the "windy city". Walking will be a huge challenge today. When I walk on a windy day it makes me feel like a human kite.
    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

  13. #43
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Tired of having positive Sagittal imbalance and looking at everyone's shoes. When I see people in front of me, I can usually see from their belt up. I was greeting a tall friend yesterday and needed to step back, bend my knees, and lean backwards to see her face. That hurts. Crap.

    Still doing PT lead warm water exercises at OHSU which are slightly painful, but overall probably good. Trying to build up my quads more.

    Waiting for surgery is the pits. Most everyone here will probably agree. For me, it is 2 days of surgery, SNF, and rehab. Hope to skip the SNF as food sucks and I am worried about infection. One SNF had a bunch of Alzheimer's folks who drooled and wore bibs. Conversations at meals were not stimulating, to say the least. Lots of soft foods....meatloaf, mashed potatoes, over cooked vegetables. And packaged pudding for dessert. Lord, save me from that place!

    Still waiting for a date from Dr. Hart. He is scheduled out quite a while and I cannot wait until February. I have an appt to see Dr. Hu on Dec 14th.

    Oh, life such as it is!

    Broken Susan
    Last edited by susancook; 11-13-2015 at 04:14 PM.
    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

  14. #44
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi Susan...

    Hope you don't have to wait until February.

    --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.

  15. #45
    Join Date
    May 2010
    Posts
    345
    Susan, So are you going to see Dr. Hu to see if she can do the surgery sooner? I feel for you so much.
    The main reason I had my surgeries was because of Saggital Imbalance / Flatback Syndrome. I looked at the ground for three years before I finially found Dr. Lenke. You have every right to be upset. It is painful!
    My husband said I new every little piece of lint on our floors!!! And he was right. When you can't hold the trunk of your body up, it makes life very awful and depressing. Let alone the fact you're dealing with paralysis in too. You need a lot of shoulders to sob on. I know your not the type, but no one would blame you. You will be so much better after surgery! It is instant relief to be able to look up again. Not that you won't still have problems to deal with, but at least you will be able to look UP!!!! Hang in there sweet lady. You need lots of prayers and support~~~~
    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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