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Rapid Onset Scoliosis (ROS)

I was wondering if anyone feels the same. I moved cross country 2yrs ago. Before I left I had a physical and was 5'7", I'm now 5'2". I've also have T12-T9 protruding out of my back. T12 & T10 stick out about 3/4in, T11 about 2in, and T9 1/2in. It seems like I can actually feel my spine rotating and it's extremely painful. I've gone to doctors and all I ever hear is "its out of my scope of practice" or "you need surgery so I can't help you". Well that's all fine and dandy, but I have yet to get any real answers. I have a neurosurgeon appt in two weeks, but that seems like a lifetime away. Has anyone had this and can help me out?

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1

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  • memerainboltmemerainbolt IndianaPosts: 6,045

    Hi SpacyTracy!
    Please click on the Welcome link below and the Tutorial to get you started on the forum.
    Welcome to Spine Health


    At least you have an appointment with a neurosurgeon. If I were you, between now and then, write down questions and concerns so you don't forget anything. 
    Four years ago I was 5'3", now I'm 5'. I had an onset of idiopathic scoliosis, all 3 levels. I can also feel when it "tweaks" or moves, painful but sometimes just uncomfortable. I had to decline surgery due to my age and other health concerns. So I had to have a pain pump implanted.
    There are other members on the forum that have scoliosis and had surgery. I'm sure they will be replying as well.
    Take care and keep us posted on your appointment.
    Sandra
    Spine-Health Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
  • Hi SpacyTracy - I had a fast moving scoliosis that moved from about 20 degrees to 51 degrees in 12 to 18 months.  I was also noticeably losing height.  My back clicked and jerked and shifted when I would stand back up after bending over like to tie my shoe or wash my feet in the shower.  I also had seen a GP and a rheumatology dr. for another issue but both had access to my spine xrays and said nothing.  So when I figured out there was definitely something major going on with my spine I made an appt with an Orthopedic Spine Surgeon.  Let me tell you, I knew nothing about scoliosis, about spinal fusion surgery, or really anything spine related.  I just knew something was going on and I wanted someone who specializes in these things to examine me.  It is amazing to me what can be done these days.  My 10 level fusion took my curve from 51 degrees to 1 degree and gave me about 1 -1/2 inches of height back.  You are scheduled with a specialist so I think you are on the right path.  Please keep us informed of how things are going.

    10 level fusion T9 - S1 with pelvic fixation. Two titanium rods, 24 screws, 4 cages.

    Firm believer in PMA

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  • Thank you urbmshr for your imput, I really appreciate it.

    I was wondering how you felt after your surgery. Could you bend over? Can you bend over now or are you in a forever stiff upright position? Do you have your quality of life back?  I know these are alot questions, but I'd really like to know how you feel now. Also how long has it been since you've had your surgery? I lead a life that exists of being in bed 23hrs out of 24hrs bc of the debilitating pain. I just want my life back and to be able to stand a little straighter. I feel like my stomach, lungs, heart, and ribs are all squished together. This is not a fun feeling. I'm truly curious about how you've faired. Thanx

  • memerainboltmemerainbolt IndianaPosts: 6,045

    There is a thread called "my scoliosis" by WLLady. It's her story from before surgery until now. Also, "my scoliosis surgery" by xrobynx". Both of these stories will answer a lot of your questions. And, go back and look for urbmshr's threads.
    A lot of shared experiences in these stories.

    Sandra
    Spine-Health Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
  • SpacyTracy - my surgery was May 2016.  If you click on my name  'urbmshr' it will take you to my profile and you can then click on the discussion I started or click on comments and see other 'words of wisdom' that I deemed noteworthy (lol).  Anyway, due to the fact that I have 2 titanium rods running along my spine from T9 - S1 held in place by 24 screws (whew) I don't really bend over in the same way as I did before my fusion.  I bend from the hips and squat down a lot.  Someone here here mentioned they squat down much like a chicken over an egg and I have to say, that is kind of like I feel.  But my quality of life is excellent and really my range of motion is pretty good.  99% of the people looking at me wouldn't even know I had anything done.  Until I have to pick up a piece of paper from the floor, that is.  That still is and probably always will be difficult for me.  I just cannot get low enough.  I need it to be about an inch off the floor to be able to reach it.  So, I just get down on my hands and knees, pick up my flat object, stand back up and move along.  You just find new ways to do things.  Putting my shoes on, no problem, socks though are another matter entirely.  But I have my handy dandy 'sock-aid' and I am not too proud to use it.  Right after surgery you get the big lecture about no BLTs and if you don't know that term now, you certainly will become very familiar with it.  No BLTs means no Bending, Lifting or Twisting.  That quickly becomes a way of life.  I still don't lift anything more than 15# although I don't really find that too inhibiting.  I already explained the new and improved bending routine but twisting is one I have to consciously be aware of.  You can't believe how many occasions there are to twist throughout a normal day.  Getting in and out of bed and in and out of cars are probably the biggies in the twist category.  But like I said, you just find new ways and pretty soon you have a 'new normal'.  May I ask, how old are you?  Age sometimes does become a factor in the treatment plan and in the recovery timeline.  My surgery was done when I was 58 and post-menopausal so bone strength had to be considered.  I'm happy to answer your questions, so don't be shy.

    10 level fusion T9 - S1 with pelvic fixation. Two titanium rods, 24 screws, 4 cages.

    Firm believer in PMA

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  • WLLadyWLLady Ontario CanadaPosts: 1,433

    HIYA!

    So i went from nice and straight (well, mostly straight) to 110 degrees between T12 and L3 in under 2 years.  i lost 3 inches.  i lost a lot of the function and feeling in my left leg.  i had nerves being crushed in my spine and my spinal cord was being damaged.  my facet joints gave up under the load, a lot of them got cysts and then started to disintegrate.  the nerve pain was relentless.  it was a super long wait in pain for surgery...and they rushed me in, and i ended up with a T10 to S2 and pelvis fusion.  so 10 levels.  2 bars, 21 screws, 3 cages....anyways, i was headed to a wheelchair with a high chance of never being able to walk after surgery.....and guess what?  i'm walking, i'm back to work full time, i'm doing mostly everything i was able to do before my surgery.  yes, i still have painful days, but NOTHING like before surgery.  for me it was a success, but it's a long recovery....and you have to be patient, oh so patient.....

    collect your questions, ask your surgeon, ask us.....anything we can help with we are happy to!  i have my whole story here in the scoliosis section - my scoliosis parts 1 through 4...lol.  it's everything.  the whole thing from the get go....until last week actually.....

    my surgery gave me back most of the 3 inches i lost in height.  i will likely never ride my horses again....or run....although i did run when my farm was burning down...so it is possible...just definitely not recommended LOL.  oh, and physio....i swear physio enabled me to get my life back.  it taught me how to move, how to get to the floor, how to exercise to get strong again, how to not hurt myself again.  definitely indispensable!!!!!

    Kathy
    Spine-Health Moderator
    ---------------------------------------------------------------
    Dec '16 T10-S2 fusion with pelvic fixation. Laminectomies L2, L3, L4, L5, facet removal, cages L4-5, L5-S1, severe scoliosis, arthritis and stenosis repair. 

  • Thank you all for responding. 

    I was so excited to have found this forum. I'm not computer savvy, so when I told my son that I had found this "site" w people on it just like me who put in what's happened and currently going on, he said, "Mom it's called a forum". I was like, "yeah that's what it's called, how did you know?" He just laughed. 

    So fair warning, I'm a doofus! Lol.

    Well yesterday I had gotten a call from the neurosurgeons office and they bumped my up to this Friday Oct 19th. Yikes! I had gone to ER last Friday bc I was having a hard time breathing and my ribs were hurting. The ER doctor didn't really say much to me except he wanted me to see a cardiologist. Why? He didn't say. They just gave me some potassium and something to bring my BP down. I already take BP meds, but apparently it's not controlling it. Anyway, when the neuro office called they said that bc I'm all twisted and contorted it's putting pressure on my heart. I also find out that bc of this my heartbeat is too rapid and I'm on the borderline of having a heart attack. Yikes! So I got bumped up. Why didn't the ER doctor tell me this? 

    Now I'm absolutely freaking out. Is this all going to be okay?

    Thanx

  • WLLadyWLLady Ontario CanadaPosts: 1,433

    so i was having the same issues with blood pressure, pressure on my heart and on my stomach and i couldn't take a deep breath, and no one told me this until AFTER my surgery, and it was probably a good thing because i would have freaked out and then driven my pressures even higher than they were.....and honestly, the ER doctors might not know a lot about scoliosis-especially in adults....apparently we aren't as common as some may think! 

    I'm very very glad they have moved you up, you might want to sign up for the surgery buddies-people connect there that are having surgery in the same month, some more support....and it's always nice to know you aren't alone in all of this!  get it done, get it dealt with, get your heart and lungs straightened out.  one thing they also didn't tell me till after is sometimes your lungs get moved so much that one can collapse after the surgery, it's not a huge deal, but they need to listen to your chest a lot to make sure that doesn't happen.  as they straighten stuff out, it puts a lot of stress on the things that are attached inside, so if you have any issues breathing make sure you tell them right away!  i didn't have any of those problems, right after surgery i was "oh wow, i can take a deep breath again!"  it was absolutely novel!  i hadn't realized how bad it had gotten until it was actually fixed! 

    hang in there.  try not to stress-i know.....i've been there, and it's scary and you can't NOT think about it.  hang in there.  be brave, and come back and let us know how you are doing when you can, when you feel like it.  Take the time to rest and recover and look after you!.....(and it's okay, i call it a "site" at well....so you aren't alone.....).   Just before my surgery i kept myself a little bit sane by preparing my house-move everything you use to a level between your waist and your shoulders.  i mean EVERYTHING!  towels, extra toilet paper, your clothes, dishes, glasses, the coffee maker (mmmmm coffee.....), food....everything.....at least it kept me busy until the day of....

    Kathy
    Spine-Health Moderator
    ---------------------------------------------------------------
    Dec '16 T10-S2 fusion with pelvic fixation. Laminectomies L2, L3, L4, L5, facet removal, cages L4-5, L5-S1, severe scoliosis, arthritis and stenosis repair. 

  • urbmshr,

    I'm 53yo and postmenopausal. I had a hysterectomy at 37. I feel like this should be the prime of my life, instead I don't have one. Whether it's God or Karma, I constantly wonder what I'm being paid back for to suffer this kind of pain. Woe is me... lol



  • WLLadyWLLady Ontario CanadaPosts: 1,433
    edited 10/16/2018 - 1:41 PM

    oh dear you sound like me.....i'm 46 now, had my back fixed at 44.  hit by lightning at 40 (should have bought a lottery ticket that year!). told i had suspicious tumours at 41, long wait list for surgery.  hyst at 42 (thankfully not stage 2 yet), hubby told when i turned 43 that he had testicular cancer.....then my back put together when i was 44, multiple deaths in the family when i was 45 - and i couldn't travel to funerals and took a lot of heat from the family for that...then had a fire this spring at the farm due to freak weather issues.....it can stop already.  hang in there.  hopefully we are just strong enough to take what someone else might not be!!!!!

    gentle hugs.....and just keep looking forward....

    Kathy
    Spine-Health Moderator
    ---------------------------------------------------------------
    Dec '16 T10-S2 fusion with pelvic fixation. Laminectomies L2, L3, L4, L5, facet removal, cages L4-5, L5-S1, severe scoliosis, arthritis and stenosis repair. 

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