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Rapid Onset Scoliosis (ROS)

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2

Comments

  • WLLady,

    Yikes! We do sound alike, except I wasn't struck by lightning. How in the heck did that happen? I hope that you're okay. It sounds scary and painful. 

    To all that reponded to my scoliosis, 

    Thank you first of all you for your responses. Here's an update from my appt w the neurosurgeon. 

    Wow! Technology has progressed so much that it's mind blowing on the procedures being done today. My scoliosis is kinda weird, what I was previously told was that the T12-T9 vertebrae that stick put of my back were compression fractures, are  not fractures, but is degenerative scoliosis at the thoracolumbar region. I have four compression fractures L1-L4, not eight that I was told before, severe spinal stenosis, and degenerative endplates L1-L4.

    The NS is going to replace my Home Depot hardware (lol) from my previous fusion S1-L1 and fix all the L issues. My rods will go from my S1 to T8 or 9. I was told that once my thoracolumbar vertebraes that protrude are stacked correctly, the rest of my scoliosis will straighten out. That part I don't understand. I don't see how that's going to work, but I'm not a doctor, so I'll go w the flow.

    What's truly amazing is that the surgery will be a multi-level LLIF, not the  full open back surgery that I thought I was going to have. Like I said, technology today is amazing. The NS said that my surgery will be more complex then the normal two level, but it's less invasive then a posterior fusion. Any input from you guys about your experience or really any info about LLIF would be totally awesome. I must say that I'm relieved that it's not as bad as I originally thought and am not dwelling on my back issues as much as I used to.

    My concern is about the "S" part of my scoliosis above the T9 and it straightening out on its own. Does that sound right? 

    As of yet I don't have a surgery date bc I have to wait for the approval from my medicaid insurance. 

    Thank you for letting me share w you guys.

    Have a totally awesome weekend and I look forward to all your responses. 

    Tracy

  • WLLadyWLLady Ontario CanadaPosts: 1,440

    hiya

    so....you still sound like me LOL.  my thoracic was curving in compensation for the mess below....and when they straightened the mess the best they could (i did have the cut open stem to stern......yikes.....the incision healing was the itchiest thing i have EVER endured...) the curving above mine did straighten out.  doesn't mean it didn't hurt while it got used to it's "new normal" but so far (knock on wood) i haven't had it come back.....and it did straighten out (my compensation curve was quite small though, under 25 degrees at the worst).  i'm so glad you had a good appointment!  and lots of information!  yay!  still, scary to hear about it, and read about it.....

    home dept hardware.  i like that.  :-)  in 20 years when they're fixing us by beaming us around like star trek i'll remember that.  (a gal can dream of getting rid of the hardware right?!).  i'm T10 to pelvis....so you'll be a level or 2 higher than me....

    i'm so glad you know what you are dealing with now for sure.  and that there's a plan for the fix.  anything you want to talk about, we're here!  i hope your insurance comes back all good.....

    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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  • Hi Gang-

    You all sound like a group that knows a lot and is supportive of each other, both of which I need.  I'm 58 and facing a t3-tailbone fusion because of scoliosis.  My back is falling apart.  I was in a car accident when I was 42 and my lumbar discs started desiccating.  I had  2- level LUMBAR artificial disc replacements, L4-L5 and L5-S1, which isn't done in America anymore because it isn't as good as a fusion.  But I happened upon a neurosurgeon promoting that and it was approved by the FDA.  It's still done in Europe, but still a bad idea. Any way, I have spent all those years in constant, persistent pain.  Then 4 years ago I slipped off a stone step and landed so hard that I thought for sure lightning bolts came out of the top of my head!   Sounds funny but it wasn't.  I must have knocked my upper L4-L5 ADR out of line. The scoliosis came on gradually, but now I'm practically collapsing over to my right side.  My search took me through 4 neurosurgeons, but I finally found the right guy ( I pray).  Surgery will be scheduled within 2 months.  Just waiting for insurance.  I'm scheduled for myelograms in 2 weeks to get all the details ironed out.

    I will take all your advice and join the surgery buddies, and I'm reading as much as I can in the articles and forums.  I have a great family support group.  My husband is retiring just because of this!  It's going to take all of my will to get through this.  My last back surgery I had hoped they would have put me into a medical coma for 2 weeks.  And I swore I'd never do this again.  LOL

    If any of you can relate to the height of a T3, will I be able to raise my arms above my head after surgery to get dressed?  People say there are no silly questions, right?

    Thanks for reading my lengthy intro.  PS, my bone density is normal.  Good health otherwise, but not in good physical shape such as core strength, flexibility.  Swimming sounds wonderful, but I'm hyper-sensitive to cold.  I plan on a year of PT.  Or a lifetime if that's what it takes.

  • Hi Gang-

    You all sound like a group that knows a lot and is supportive of each other, both of which I need.  I'm a 59 Year old woman facing a T10 through tailbone fusion because of scoliosis.  My back is falling apart.  I was in a car accident when I was 42 and my lumbar discs started herniating and desiccating.  A NS did a 2-level LUMBAR artificial disc replacement at L4-L5 and L5-S1.  Anyway, I have spent all these years in constant, persistent pain.  Then 4 years ago I slipped off a stone step and landed so hard that I thought for sure lightning bolts came out of the top of my head!   Sounds funny but it wasn't.  I must have knocked my upper L4-L5 ADR out of line. The scoliosis came on gradually, but now I'm practically collapsing over to my right side.  My search took me through 4 neurosurgeons, but I finally found the right guy ( I pray).  Surgery will be April 29th.

    I will take all your advice and join the surgery buddies, and I'm reading as much as I can in the articles and forums.  I have a great family support group.  My husband is retiring just because of this!  It's going to take all of my will to get through this.  After my last back surgery I had hoped they would have put me into a medical coma for 2 weeks.  And I swore I'd never do this again.  LOL (not to scare anyone, just prepare your mind for the war).

    If any of you can relate to the height of a T10, with cement at T9-T10, will I be able to raise my arms above my head a couple days after surgery to get dressed?  People say there are no silly questions, right?  What about reaching far enough to take care of my most personal hygiene?

    Thanks for reading my lengthy intro.  PS, my bone density is normal.  Good health otherwise, but not in good physical shape such as core strength, flexibility.  Swimming sounds wonderful, but I'm hyper-sensitive to cold.  I plan on a year of PT.  Or a lifetime if that's what it takes.

  • WLLadyWLLady Ontario CanadaPosts: 1,440

    Hi ksdor!

    for the first 6 weeks after your surgery be prepared to not be able to reach much above your head level.  i had problems brushing my own hair for the first 3 weeks....and getting a mug out of the cupboard was virtually impossible for about 3 weeks.  (i am T10 to S2 and pelvis-i just collapsed the other way from you-i went to the left instead....).  i used button up shirts for the first few days, but then could get a t-shirt on or a sweater no problem.  I did have to buy a toiletting aid-a reacher that would hold the toilet paper for me.  I did have a horrible time reaching properly to wipe.  But-that got better after about 6 weeks.  i still carried it with me until about 3 months, and at about 3.5 months i didn't need it at all anymore.  i also taped a longer handle (just a piece of wood) to my razor so i could shave my own legs...lol.  i also had difficulty cutting my toenails, and putting on socks.  a sock aid comes in very very handy....and it is amazing what one can learn to do with a reacher/grabber tool! 

    and, my hubby and i put in a current pool for swimming, and we adjusted the temperature so it's not so horribly cold to get in.  some therapy pools are also kept warmer so it's not freezing cold getting in.  i'm very glad we did, i would spasm everything getting into a regular temp pool and then couldn't do anything (i couldn't even get out of the pool!), so having the temperature higher made a huge difference to me.  but you likely will not be swimming at least until the stitches/staples come out and your incisions heal up completely.  for me i think i was walking gently in the pool at about 3 months post surgery, and starting physio (i'm just over 2 years now and honestly it's a memory that i would love to just forget LOL).  just remember to listen to your body, (and when it gets loud that's what the drugs are for!!!!) and follow your surgeon's instructions.  and no bend, lift or twist....going to S you will lose the bending at the waist, but if you practice using your hips instead you'll find you can do a lot more than you might think.  Yes, the mental game is a tough one.  We are here, surgery buddies forum too, and if you need it make sure you have a doctor you can talk to-it's really really easy to get depressed when the healing takes so long and the improvements seem to be slow.  and there are no silly questions.  not about this....

    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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  • hi Kdsor

    welcome to our little group. I was fussed at age 58 from t9 to s2 with that pelvic fixation. that was in dec of 2016. yes the first 2 weeks are really hard pain wise and all I wanted to do was sleep through it. it is life changing surgery that's for sure, recovery is long. slow and at times painfull. I could reach my right arm ok but had some trobble with left arm, I could do enough to dress myself but could only reach stuff off of high places with right arm..pt took care of that and I am doing much better with that now. my surgery caused a left leg weakness so I spent most of my pt adreesing the leg and getting strength back in it. now at two pluse yrs post I am working on posture because of the surgery and showing inprovments.

    we get back what we put into it..but it may take YEARSSSS to get as much as possible. and know there will be some things you never will get back. the chanallanges are to find new ways of doing old things. the recovery is as much mental as physical and emostional. you have to grive over what we have lost..grief is part of any kind of loss weather its a loved one or an ablity. be kind to yourself, and aloue yourself to sit on the pitty pot now and then,...JUST do not camp out there. we are here for ya, good luck and keep us informed

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