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4 cages, 2 rods, 36 screws, 360 surgery, T4 - S1.

I developed idiopathic lumbar scoliosis in my 30's. I am 61 now. I used to be very active: full time job, played in 2 tennis leagues/week, walked miles. Then gradually, arthritis began settling into my lumbar spine. I eventually had to give up my beloved tennis as I could no longer lunge for the ball. It was the weirdest thing...My brain told my body what to do, but the body just couldn't obey! In my 40's, the low back pain got more and more annoying. Tylenol wasn't cutting it, but I did find relief with Aleve. Not sure why, but there was a big difference. Anyway, after a while, that didn't work either. I was travelling like crazy for my job, and there were times that after airplane rides, I was in so much pain that it took me a few minutes after standing to be able to take steps to deplane. I finally decided to go see a chiropractor to see if spinal decompression would help. The chiro sent me to get an MRI after hearing my symptoms. I remember walking into his office after the MRI results came in: there were films up on the light board, and I remember seeing them and thinking to myself, "Damn, that poor soul has one messed up back. Thank God that's not me". Well....you know where this is going....he told me that those were MY films. I was shocked! Thankfully, the chiro doc told me he wouldn't touch me and told me to see a specialist.

Fast forward to the first x-ray with a scoliosis specialist: They xrayed and measured my height. I have always been 5'10" tall my entire adult life. They told me I was 5'9" that day. My curve was 30 degrees. It was a C curve. There was considerable arthritis. They told me that I should just come back every year or so to check in. All this time, I was able to continue walking...usually 3 miles per day. Year by year, I would return (ended up changing docs because the first guy had zero bedside manner) to check in on my curve progression. By the time I was in my 50's, I had gotten shorter, the curve had gotten bigger, but other symptoms started showing up: sciatica (ugh!!!), lost feeling in 2 toes, and that ever-present pain would rarely go away. My walking had to be cut down to 1.5 miles, then eventually, I could barely walk a mile. By my late 50's, my curve had increased to 43 degrees, numbness had set in in my toes, and people really began noticing I was crooked. My height was down to 5'8". I had talked to my doctor, and we both knew surgery was inevitable. Thankfully, I had taken up yoga which gave me tons of relief. I sincerely believe that the yoga prepared me in the best possible way for the surgery. It kept me flexible and stretched out the muscles that always seemed to be hurting.

Well, last August (2018), I took the plunge. The night before my surgery, I measured just a hair under 5'7". I was scared to death to have the surgery. There were so many things wrong in my spine that not having surgery was not an option. I would have ended up in a wheelchair for sure. So I sucked it up and did it. I had several completely collapsed discs, I had spondylolisthesis where the vertebrae slip forward over one another, spurs, arthritis, you name it.

The surgery was called a 360 meaning they go in through your lower tummy to insert the cages (ALIF), then flip you over and do the curve correction. The c curve had caused my upper spine to compensate, so I ended up with another curve in the thoracic region. So the cages, rods and screws went in, and 92 staples later, I was in recovery. I will spare you the details of my ICU experience. But I had some severe reactions to the drugs they gave me....I have no memory of pulling out my IVs (in my hand and yes, I even yanked out the main line in my neck!!!). Once they got the meds straightened out, I started recovering. Spent 5 days in the hospital, then was moved to an In-patient rehab facility. That was a God-send. They got me up, walking and rehabbing immediately. Went home 10 days later.

Once home, I had several episodes of tears intermittently over the next few weeks. They gradually tapered off. It was a BIG surgery and the recovery was slow. The biggest thing that shocked me is that I am one of the few people who can feel the hardware inside my body. I don't mean I can feel it from the skin side, I mean I am extremely aware of the instrumentation inside me on my spine.  I thought everyone felt it until I spoke with another woman who had the same surgery (exactly) and she had no idea what I was talking about...she said she doesn't feel a thing....and she was 4 weeks behind me in her surgery! I don't feel it in the lumbar area, I only feel it on the thoracic area. It feels like I have a train track welded to my spine. I am used to it now, but the feeling has not gone away. I really feel it when I turn over in bed, lift something heavy, etc. Why me?

I was off from work for 11 weeks, then returned. I work in a retail store, full time, and am on my feet all day.I started slowly, but can now do everything: I lift boxes, lift products, etc. I honestly believe that going back to that job was a blessing as it is definitely a lot of exercise for my back. My back has never hurt since the surgery!!!

So now I am almost 9 months post op. I still have nerves healing in my legs, especially my buttocks and thighs. I don't walk very well just yet, but I get better every day. I feel like I must look like Bigfoot when I walk....not as graceful as before, but I am working on it! 

OH..almost forgot to tell y'all….I got 2.5" back! I'm back to almost 5'10" again!!

All in all, I am happy I had the surgery. I plan on updating this monthly as the healing for my ordeal can take up to 18 months. I will be thrilled if I can pick up tennis and yoga again! I really miss my yoga, but I am not quite ready for that.

I hope my story helps someone and gives you the courage to go for it!


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Comments

  • TallAgain

    welcome to spine-health

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    Thank you for sharing your story, we have several members that have had or are waiting to have a long fusion surgery, your story will be very helpful.

    Chip

    challenger
    Veritas-Health Moderator


  • WLLadyWLLady Ontario CanadaPosts: 1,486

    Hi Tall Again!

    i'm so glad you are doing so well after your surgery!  that's wonderful news!

    isn't it nice to be almost the correct height again?  i went from 5'10" to 5'7"....and back to 5'9" and 3/4...lol almost 5'10" again.  it was very disorienting actually, and my balance was off for a long long time.  i got fused T10 to pelvis.  anyways, i wanted to say hi!  and chip beat me to welcoming you to the forum.   :-)

    i also feel my hardware-only in my T10-12 area.  below that it may as well not even be there, i don't notice.  unless i lean against a wall or counter and push on the screw heads....then i notice!  but for some reason the hardware at T10, 11 and 12 i notice ...must be differences in the innervation there or something.  not sure.....but interesting!

    glad you are here, and doing well!

    Kathy
    Veritas-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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  • Thank you for posting this. I’m headed to a similar surgery basically just below the neck all the way down. Mine will all be from the back though. I’ve gone from 5’11 3/4” to 5’7 3/4” yep four inches. I’ve tried to avoid details, but now I’m getting worried about lifestyle changes. I’m assuming a successful outcome, hard and long recovery, and am OK with that. My concern is being able to climb into thight quarters, like my car and similar toys. Think about something like a Miata  

    Also, everyone here seems to be a little younger - I’m 78. Your experiences are helpful. 

    Ernie 

  • WLLadyWLLady Ontario CanadaPosts: 1,486

    ernie, i had 10 levels done T10-S2 and could not get into my husbands volkswagon golf without hitting my head on the top side of the door because i couldn't "stoop" enough to avoid it.  my stepmom has a miata that i really really fear having to get into-i can get in, but not out because of the angle of the seats.  if i have help to get out, no problem!  ironically a friends cadillac is the worst, again, i can get in, but the angle of the seat is such that i cannot get out without help.  and for me it's not so much getting into the tight quarters-it's the getting out part.  With that said, anything that i've really really wanted to do, i have found a way to do it after my surgery.  but i'm still figuring out how to do some things - and it's been 2.5 years since my surgery.  so it does take time....

    Kathy
    Veritas-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. 

  • Thanks Kathy. I was trying to describe something close. The truth is worse than a Miata. Maybe a Miata with the door welded shut. My “hobby”/toy is an antique open cockpit biplane. I’m trying to decide whether to give it up now or hope I can get in it again in the next year or so. The good news is there is a handhold just above eye level. The bad news is I have to swing out and away, swing my leg over like mounting a horse, then step over the side with the other leg and slide down into the seat. I could use a stepladder with someone to move it out of the way.  Assuming I can climb a ladder.

    Ernie 

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  • Ernie, at work, I go up and down ladders every single day! I haven't tried getting into a Miata sized car, though. That said, my attitude is that I assume that I will be able to do everything I used to do IN TIME. So if I were you, I'd hang on to your cool 'toy' ...it might take you a year or more but have faith!

    Cheers!

  • WLLadyWLLady Ontario CanadaPosts: 1,486

    can't tell you how many times i've been on ladders in the last 2 years (had my surgery 2.5 years ago) repairing my greenhouse....it's possible.  to get over something i have to lean forward at the hips-and put my leg straight behind me and then rotate my other hip instead of swinging at the waist.  if you want to see what it's sort of like-take a broom handle and hold it down your spine-hold it at your shoulders and at your tail bone.  then lean over without the broom leaving your back.  that's how you have to bend it's all at the hip.  and it's actually quite doable.  i would actually be way more worried about the bouncing of the plane on landing and taxiing and take off then getting in!  you can lower yourself down with your arms - i do that all the time getting into the tub or climbing out of fixing the well pump (yep...i've been into my well...lol).  one thing i did notice is a large step up is difficult-like stepping up onto the step to get up on the tractor....i have to lean my body to lift my hip to get my foot up high enough.  but a simple step stool helps.  and now that my back can take a little jarring i can actually jump up onto the step and pull myself up with my arms.  the bouncing part sitting down....think gravel road and potholes....i am 2.5 years out of surgery and can finally take it without super-bracing myself.  i really had to strengthen my core to handle driving over rough terrain.  and even now if i ride my atv across a field it's way easier and less painful to stand and take the bumps with my knees and hips....yeah, definitely hang onto your hobby!  it also makes recovery more bearable, because you will have something fun to look forward to!


    Kathy
    Veritas-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, that’s very encouraging. Landings can be pretty soft, particularly on grass. Even pulling Gs during aerobatics is smooth with the recreational stuff I limit myself to. No Flying while I’m on pain meds of course. But hopefully by the end of summer I can get some idea of the possibilities. 

    Pushing up or letting yourself into the seat with your arms is the way now. Once I’m standing in the seat I don’t envision a problem. 

    Thank you both a lot. 

  • Tall again:

    What an uplifting story! And congrats on the smooth recovery. I would still be super careful on the ladders though. I'm almost 2 years out from a T4-pelvic fixation and 9 months out from a revision surgery after non fusion. SOOOO even though I thought I'd be just dandy doing all the same stuff I used to do, I somehow managed not to fuse completely. I am definitely in the minority here...I think so far everyone else has successfully fused. 

     The only time I've felt my hardware is when someone has given me a side hug...you know those people that sidle up beside you, put their arm around your shoulder and squeeze!? OOOOWWWWW....that hurts and I feel all sorts of metal. Also if I bump my head on the side of my car while getting in...and then once when I was on a ton of steroids and I guess the lack of any protective inflammation just made me feel everything.  I love Kathy's description of climbing over something because I've never broken it down that way but somehow i always feel like I'm going slow motion over a sprinters hurdle...you know? Those little 'fences' I dunno, I'm not an athlete but it does feel different! I think your surgery was textbook wonderful and possibly your attitude has been stellar. So yay you!!!

    Ernie!!!! You crack me up because your mind set is absolutely perfect!! I remember watching a video of a woman older than myself who had gone through a scoliosis surgery and was on the mountain skiing again. I keep thinking of that and hold out hope, but to be honest I don't think I'm recovering the same way. I do NOT get into my husband's little Subaru BRZ, it's teensy, it's rough and I hate being in it. But knowing how much he loves cars, racing and planes, I'll betcha a million bucks if he had this surgery he would alter nothing.

    much love and support to everyone!!!

    Noreen

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