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Thread: Trying to figure out tight sacral pain

  1. #1
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    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
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    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 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

  3. #3
    Join Date
    Aug 2015
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    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
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    Dec 2008
    Location
    illinois
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    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
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    Utah
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    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
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    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
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    Good point, Linda Racine, regarding insurance. I had an illustrious career as a child care provider which naturallywould make me cautious about insurance. However, my brother is extremely wealthy and willing to help if the experts deem that exploratory surgery is the most viable option.

    First, I'm going to explore the up and coming diagnostic tools. I have a SIL and another relative who are radiologists. I will contact them. Insurance OR brother - I would be best served by getting cutting-edge non-invasive diagnosis. Thanks for guiding me in that direction.

    Sometimes, it's challenging to figure out where to start!

    Appreciatively,
    Ginger
    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

  8. #8
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    Hey everybody, I met with a neurosurgeon today about a spinal cord stimulator. My pain control MD said that due to scar tissue, I needed to see an expert on SCS. Dr. Raslan was optimistic that he would be able to install [is that the right word?] the SCS. My pain is R leg and sacrum which started 2.5 months after a lumbar revision.
    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

  9. #9
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    reno,nevada
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    Susan, I sure hope this works for you....Any idea when?

    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

  10. #10
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    Thanks Ed. Aging [now 73] is not my friend. I need a R shoulder replacement also due to severe arthritis (read no cartilage, bone-on-bone). The ortho MD suggested that I try an arthroscopy with clean out of debris first which is phenomenally less pain/suffering than the full shoulder replacement (which is probably in my future ;+[ )

    Oh yea...and a T1 pedicle screw with lucency and a rod (I have 5 rods!) that is a bit long to be removed. I have L thoracic pain and Dr. Hart is hopeful that the hardware removal might help. The rest of my spine is fused.

    I need to figure out what hurts the most and when I can schedule surgery and recovery. The shoulder replacement will involve 4-6 weeks in an arm/shoulder sling but the arthroscopy will only involve one week in a sling. I need both arms to get out of bed. Fortunately, I have a marvelously supportive husband.

    So, the spinal cord stimulator will probably happen in March, assuming that he can actually thread the wire in the T6-8 space. From the feedback that I received from this forum, I may wake up from surgery to find out that he couldn't weave the wires through my scar tissue. Neurosurgeon Dr. Raslan at OHSU said that most of his patients get about 70% pain relief. He does about 100 SCS surgeries/year x 8 years. I will post a comment after the surgery to let everyone know the outcome.

    Susan
    Last edited by susancook; 10-04-2019 at 10:41 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 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

  11. #11
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    reno,nevada
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    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 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
    Jan 2008
    Location
    Utah
    Posts
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    Thanks for your perspective, Ed. We certainly ARE a courageous troop of survivors. Susan inspires me with her attitude. Ed inspires me because he is willing to support so many of us on the forum. And then there's LINDA. She's a gift to us all.

    I'll let you know how I proceed.
    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

  13. #13
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    reno,nevada
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    Susan, The shoulder surgery I had was arthroscopic through around 5 portals. I took one Celebrex for pain and went into PT right away....after scoliosis surgery, this was easy peasy...no problemo. I have had more pain from tooth extraction. My Gall bladder removal was the same except that I took no medications at all. None. Incredible success, hard to believe these surgeries went that smooth.

    My shoulder surgery physical therapy was extremely helpful for my back. They were targeting the shoulder, but many of the routines and especially the arm bike were helpful for the thoracic spine. It toughens up the paraspinal's over the screw heads. A desensitizing effect....PT was a good experience for me.

    T1 is up high.....I hope removing that screw helps. Once again, you know that you can only hope that it works, there are no guarantees on surgery. I remember when you had the upper end revised. That was an emergency....You also had the large ALIF, something I cant forget since we have both done that one. Its a heavy duty procedure, I am sad you are having your hip and leg pains. I do have the occasional leg shocks, and weird pin pricks in my legs every now and then. Its to be expected I guess after all that lumbar work front and back. My belly is huge now....I blame it on microplastics. Everyone is worried about the oceans and I am worried about my belly. Its nice to have an excuse. Ha ha

    I have an ex-girlfriend who had all her fingers chopped off (Not the thumbs) due to arthritis. Age 50 She also had pins put in all her toes... I know another person who had multiple wrist operations as a child on both hands, and his wrists are perpendicular to his forearms. 90 degrees. Arthritis is serious stuff.

    I ended up getting a Hoyer lift for my dad when he had ALS. It was much easier on him vs having a CNA pull on the belt. I'm sure you have seen this. I don't know how these girls did this. Talk about hard on the back. (for the caregiver!) These devices are only about $300. Check with any nursing home, you will get it cheap. Same for wheelchairs. I used to move my dad from bed easily with this device.

    Remember the movie 9 to 5 with Dolly Parton? She hits the garage door opener when her boss gets out of line. That's a quick way to get out of bed. I might consider this myself, but getting Dolly out to my house to hit the button might be a problem.

    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

  14. #14
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    Quote Originally Posted by Ginger W. View Post
    Thanks for your perspective, Ed.
    Ginger, Please realize that I do post "in general" quite a bit of the time because there are many other readers....

    Again on the phone, we talked about the adjacent level issues we have at the top of our fusion masses. I take my finger tips and press forward firmly at the top of the fusion mass and I look up at the same time and it will pop which is so helpful OMG. Looking up hard is helpful for the neck, I will get some loud pops that startle folks. The stretching regiment for the neck never ceases, its constant. Otherwise it will simply lock up and get really stiff and we cant have that. If so, I would have to get me one of those Dr Evil rotating chairs and do comedy. I would also have to get me a fully fused Mini-Me. (smiley face)

    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

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