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New here-a bit about me, and hi to everyone!

WLLadyWLLady Ontario CanadaPosts: 1,461
Hi Everyone,
First off, thank you for the add!!! I've been hanging out a little while and finally decided to join...I'm new here....just signed up because I think I have done too much reading online, and haven't actually met anyone (even talked online or anything) with something like what i have....anyways, I know what I am facing now, after a very long time of waiting to see a specialist (wait times where I am are a bit long-more so when one has no clue why it hurts so much!), and many many more tests with a lot of "oh, now that's neat" from the surgeons.  I don't know about you guys, but I don't really want to be "neat" anymore LOL and it always scares me when they open the door and tell the admin to "go get the residents, they need to see this!".

Long story short, I'm 44 and headed into the biggest awfullest sounding surgery i have ever heard of.  A T11 to pelvis long fusion. 22 inch incision.  22 screws.  2 bars.  Cages at 6 levels (T12-L1 through to L5-S), full laminectomies at L2 and L5 (pars fractures) and decompressions at L3 and L4 as well as facet joint removal at all levels from L2 through L5 due to severe facet joint degeneration (the joints are disintegrating into pieces-the xrays looks like little bombs have gone off in the joints with all the pieces in there).  The most surprising though was the standing xrays showing that I have a 70 degree lumbar scoliosis with rotatory component (100 degree rotation on bending xrays; who knew!?). the 70 degree is still flexible thank goodness-but everything twist way out when it's straightened, so it's not juvenile but directly related to degenerative disc disease and inflammatory arthritis of some type (not ankylosing spondylitis-I have rheumatoid but they aren't quite sure about what is going on with the facets).  Many tests/images later...synovial cysts all over the place pushing on nerve roots and a mostly numb (when it isn't aching) left leg, diminished sensation in that leg too.  foot drop comes and goes-it's okay from 10 to 12 every morning LOL.  then the day goes downhill as gravity takes it's toll.  I have lost 2 inches in height in the last 18 months, lean to the left all the time, one shoulder higher, one hip higher.  no waist anymore.  belt size has increased 3 inches despite losing 20 pounds....gah!  nothing like destroying the ego right there!  yay, the scale went down, but BUT....i still need larger waist size?  really??!    I've had a grumbling back all my life, and arthritis pain since i can remember-nothing I couldn't just push into the back of my head until last year though.  Glad I know what the problem is now, but honestly, I am richoceting between "it's the right thing to do" and not scared, looking forward to it, to "oh my goodness is this the right thing to do".  I trust my surgeon 100%.  I like him, and he will have another surgeon helping and a neurosurgeon there-both of whom I also trust.  The date hasn't been finalized yet, but should be around december this year (Ontario's health system is a little back logged right now).  I don't know if I will make it to december with the pain and decreasing mobility, but I will do my best. When I asked my surgeon what happens if I do nothing he said 5 years to a wheelchair because this is collapsing and twisting as it goes pulling on some nerves and pinching others....so surgery it is....and I'm good with that (except in my emotionally weaker moments).  I'm sure range of motion will change, but I'm sure I'll figure it out.  Just this morning I felt like I was trying to attempt acrobatics to put my stupid socks on!  I can't wait for that to end...and the lightning strikes down my legs to go away.....hopefully! (not to mention fix the old boat from listing to the left....?).  I'm trying to stay as active as I can, but can only walk about 30 yards before I have to relieve the pain down my legs from spinal stenosis at L2.  Running is out of the question, as is sneezing...that's a new experience-talk about brace yourself we're going down if I get caught with a sneeze off guard!  My favorite pasttime is lying flat on a concrete floor right now-cool, hard, and doesn't move! LOL.  I can bike (oooo BORING) on a stationary bike, that's just about it.  It's a bit frustrating I must admit.  Surgeon thinks that things will be much much better after the surgery.  I hope he's right.  For now it's about all I can do to make it through a day working full time, and then running a farm on top....taking care of livestock is a challenge now, thankfully I have a wonderful husband who helps a lot.
Any hints on how to stretch right now, how to loosen up my spasmed muscles.....how to just generally keep going until surgery are greatly appreciated.....thanks for listening!!!
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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Comments

  • Bruce EitmanBruce Eitman Akron, OH, USAPosts: 1,510
    WLLady

    Welcome to the Spine-Health forums.

    Well, that is neat!  (Sorry, I couldn't help myself...)

    It sounds like the surgery is going to be a good thing for you.  You are not alone in having some nervousness about upcoming surgery, and especially spine surgery.  Do you have any specific concerns?

    As far a stretching goes, have you worked with a physical therapist?  That is probably the best way to work out stretches for your specific needs. 

    Another thing that may help get through until December is a TENS device.  Your surgeon could prescribe one.  There are also some fairly cheap devices available at Amazon.

    Please click on the following link for some helpful information to get you started Welcome to Spine-Health

     

    Bruce

    Read my story at Bruce - My Story
    ACDF C4-C5-C6-C7, and getting better every day
    It has been a process of healing, learning, exercising, and resting - and figuring out when to do which.

  • WLLadyWLLady Ontario CanadaPosts: 1,461
    Thanks Bruce
    I do use a Tens unit and honestly havent had much difference. I have been to 8 different physiotherapists and none will touch me before surgery. Lots of offers after the fact though!! The biggest worry for them are the fractures. The one at L5 is separated and travelling down my pelvis some. I did find one physiotherapist that gave me some strengthening core stuff that has helped some but now my hip has bursitis (common i hear with scoliosis cases?) So i am in a bit of a holding pattern till that subsides a bit.

    My surgeon freaked me out by saying that he would drill holes in my skull and pull my skull and hips to straighten the curve for surgery...has anyone had that done? That i think scares the daylights out of me. 
    Also I have zero idea what to expect painwise.  Right now I have some sharp pains that will actually make me throw up-it cant be that bad afterwards could it? Or could it? 

    I know this will not get better without hardware, maybe i just need some handholding? Lol not quite sure. My husband is phenomenal but i find its tough losing my independence one step at a time here-something i am not doing gracefully i imagine.  Curious how other people handle that too...i am ultra independent...this is a huge adjustment for me...


    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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