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  1. #1
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,577

    Trying to figure out tight sacral pain

    I am fused T1 to sacrum with pelvic fixation x 6 years ago with a few revisions. Of recent, especially after a lot of walking [I use crutches as I am a partial paraplegic.....long story], my sacral area has a progressive tight sensation which is especially painful to the point of tears. It seems to me that when I walk, my hips/butt "swish" back and forth for lack of a better description, kind of like the lumbar area and the sacrum are not solidly attached. So, all of you that have pelvic fixation, do your hips swing back and forth when you walk or does everything seem like it follows the same motion? Anyone know what I am talking about?
    Thanks
    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

  2. #2
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,028
    Susan, There are times when I get really tight, but only after "sitting" in the same position for long periods of time....(Lack of movement) This morning getting out of bed, I had the gait of a bulldozer on big rocks (stiff pelvis with the exaggerated swinging or rotation of hips) for a few minutes. It almost seemed like it was caused by the hips....put it this way, its not smooth. Many times I will get up from sitting in my office chair and have to support myself with my arms on furniture. (desk, filing cabinet, credenza) for a few to make sure its all good before I continue out of the room. Once I am up and going for a bit, I am good to go. I don't know what is adjusting during this period? I am assuming its the nervous system.

    My gait will change depending on pain, or muscle stiffness. Getting out of a car after a long drive I will be like this. It happened today after a 30 minute drive.

    I don't think they really know what is happening with our soft tissues....especially after the effects of surgery or multiple spine surgeries. You know about the stripping, and possible metalosis related blackening from the rods after many years. You see this on revision photos...I would imagine that the only way they know this is by going back in on a revision. (smug face) Tightness, scar tissue related tightness, I have found seems to happen a lot with weather, or atmospheric pressure changes dropping. I am not looking forward to this winter.

    Every day can present new challenges and new (Adult or Senior) pains are always scary. Overexercise is defined by each persons individual status, and it seems logical to believe that its gets set by pain signals. It is interesting having to go through all of this as scoliosis patients. The lucky ones get to resolve these issues by doing easy or easier remedies such as laying down etc. I hope you can resolve this issue easily.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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. #3
    Join Date
    Aug 2015
    Location
    Midlands, UK
    Posts
    35
    I'm fused T2 to sacrum plus my left SI joint is fused but I have no movement in that area.

    However, I am suffering still and am currently considering the pros and cons of having my right SI joint fused and my loose pelvic bolt removed which my surgeon said he will do at the same time. However, he is unable to say whether i will get any relief from the surgery so it will be experimental from his point of view.......
    Juvenile Idiopathic Scoliosis diagnosed aged 6/7
    Milwaukee brace 1980 - 1984, Fused T2 - L3 with Harrington Rod 1984, 10 rib costoplasty 1999, artificial disc at L3/L4 2003, extended fusion to L5 2006.
    2015 - Sagittal plane imbalance correction by insertion of 30 degree hyperlordotic cage at L5/S1 level (anterior approach) with fixation to pelvis (posterior approach) now fused T2 to sacrum.
    2017 - October - SI joint fusion - left side
    2017 - December - Revision of failed left SI joint fusion

  4. #4
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    831
    Hi Susan, I'm not sure but I know women in general seem to waddle when we walk. I think it comes from the fact our hips are wider to accommodate child birth. After having those sweet babies we get to blame them for our changes the rest of their lives.
    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
    Jan 2008
    Location
    Utah
    Posts
    155
    I am having sacral issues, just one year after a surgery with Dr. Berven. The pain varies throughout the day. However, it is quite limiting and definitely focused around S2. CT scans (with contrast) show nothing since there is too much hardware in there.

    I am considering a surgical intervention to evaluate the situation. Doctor recommendations would be greatly appreciated.

    Sorry for your struggles, Susan. We certainly go through A LOT with scoliosis.
    Ginger Woolley

    Oct 2018, L3 - S1, Anterior & Posterior, Dr Sigurd Berven, UCSF, San Francisco
    ******
    May 2008, T4 - L3, Dr. Ohenaba Boachie, Hospital for Special Surgery, NYC
    ******
    Sept 1967, T4 - T 11, without instrumentation, Dr Thomas Brown, Stanford

  6. #6
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,025
    Quote Originally Posted by Ginger W. View Post
    I am having sacral issues, just one year after a surgery with Dr. Berven. The pain varies throughout the day. However, it is quite limiting and definitely focused around S2. CT scans (with contrast) show nothing since there is too much hardware in there.

    I am considering a surgical intervention to evaluate the situation. Doctor recommendations would be greatly appreciated.

    Sorry for your struggles, Susan. We certainly go through A LOT with scoliosis.
    Hi Ginger...

    I read somewhere recently that insurance companies usually do not pay for exploratory spine surgeries. Surgeons need to prove a diagnosis radiographically. Have you tried injection(s) or PT yet?

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  7. #7
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,028
    Quote Originally Posted by Ginger W. View Post
    We certainly go through A LOT with scoliosis.
    Your not kidding Ginger.....

    Defining "A Lot" is worthy of its own thread. We could all write our "peak pain" moments down, our pain testimonials, after many years, I guess it helps justify our surgical decisions. I have to think hard since I have the ability to forget these sorts of things. There are times when its good to forget things....

    People wonder why we do these extreme spine surgeries and most have no clue what we go through. None whatsoever....No idea about severe pain. We have to educate them. For severe scoliosis patients in pain, it drives us to the table again hoping for relief even if that's not the answer. It can be, and it can't be but we do it anyway. The amount of bravery it takes is at its highest level.

    The thing is, we have to figure out if its a surgical decision. Can we do a full pit stop with major rest to try to get the inflammation down? Whenever I get into trouble, I do a full pit stop and stop all activities. In bed, as still as I can be to try to get things to settle down. Hot water immersion helps. Sometimes its not easy and the neuropathic pain and or soft tissue injury pain can be relentless....I want to assume that since your pain problem isn't exactly standing out, that this might be the case. I have used NSAID's in the past, and have had good luck with soft tissue injury. Sometimes it takes a while.....it could take a month or more of extreme rest. Medrol packs (Oral steroids) are sometimes prescribed, ask your doctor if an oral would be better, the beauty of this is that its not a pinpoint shot location. It covers more than one particular pain area....
    https://en.wikipedia.org/wiki/Methylprednisolone

    Always be aware of side effects on any medications.

    Its unfortunate that scoliosis is all about timing and waiting. Boy are we patient! I can watch the grass grow now. Waiting in heavy pain really makes it so hard to do, but we all know its in the cards for us. Healing takes patience.

    Rest the body, and rest the mind....I always think of the Star Wars film where Obi One deactivate's the tractor beam :30
    https://www.youtube.com/watch?v=Hs9BRRVFGMw

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

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