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Post op journey - long fusion T10-pelvis

I was diagnosed when I was 15, too late for me to brace. I had a lot of muscle pain and did chiropractic and PT but remained stable for many years. I also have SI joint dysfunction so it took a bit to realize I had 2 herniated discs out of the blue at 31 at L4-S1. My S curve was 39° with a cervicothoracic compensation curve at 17°.

I had 2 microdiscectomy surgeries a couple years apart but when degenerative disc disease and facet arthritis and new bulging discs kept me from doing anything I cared about it was time to try the fusion. I'd tried every possibility available to me, injections, meds, therapy, accupuncture, neurofeedback, tens, etc. 

I was terrified but my only other choice was to keep playing jenga with my back or fuse. I created a bucket list when I scheduled the surgery of things I enjoyed that if things went wrong I would miss. Dancing, hiking, walking my dog, going to concerts, etc. The only one I couldn't do was hike but I managed to accomplish the others even if it was only 2 minutes of dancing because the pain stopped me. It helped me pass the days leading up to the surgery positively and with hope rather than awaiting something fearful. I also did a lot of research and ordered everything I could possibly need and packed items easy to dress in and set up house (nested). I missed some things that were unexpected but I had a lot of support. I even turned my enormous brace into a warrior costume so I'd bring a little joy to myself and others on the floor who were also struggling. I had funny shirts made and dressed up for st patricks day while I was in the hospital. 

I don't remember the first night at all but apparently it was hard trying to control my pain,  I won't lie ..it was excruciating and there were days I'd mostly sleep and cry with pain, muscle spasms and feeling so stiff but staff was super helpful and I had ZERO shame at this point. Just survive was all I thought and the in house OT was very helpful.  The nurses kept saying how it was great I still had a sense of humor while I was there. It's important even just for a moment to laugh or have something to look forward to enjoying. 

The first few weeks home I was in a lot of pain but found that getting up actually helped even though it was painful and exhausting but every day got a little better as I got my bearings and worked with home health. It seemed overnight that I was preferring to be up and doing my own things best I could with restrictions but still needed help.

I'm almost 3 months out now and it feels like the worst is a distant memory. I have a screw in each of my si joints as an anchor which still hurt but I'm taking care of myself and taking quick car trips daily. My muscles are finally settling in after decades of contraction on the left side and rarely bother me, except when I'm too active. I still have numbness and nerve pain in my right thigh from positioning during surgery (5 hours and ahead of schedule!) but we hope it will go away. Usually does according to other journeys I've read and my docs.

I still have tools I need to wipe, since I can't twist or reach down there much, and a grabber I carry on my back like a sword. I'm working from home as well. I have days that are hard but most of the time I'm doing ok. Soon I'll be able to take care of my dog and start outpatient PT. I still have plenty of challenges but nothing like I thought. I thought I'd still be bed bound or worse at this stage but I'm happy with my progress so far. 

Fear is healthy and it's ok to be scared, this surgery is very tough but you soon realize how tough you are too. Everyone heals differently and has challenges but in a community like this we can overcome anything together. Stay positive when you can and let it out when you can't. Get creative and let people help you! Also eating healthy and lots of water is really key cuz constipation, bloat, illness, etc is not a struggle to be added on when your muscles hurt and you're tired and sore. 

Sorry for the length but for many of us the journey's anything but short. Success stories are so hard to find online but believe me they exist, people just aren't sharing them as often.

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13

Comments

  • WLLadyWLLady Ontario CanadaPosts: 1,493

    HIYA!!!
    congrats on getting through!  i read your post and thought i was reading through my post from about 1.5 years ago, when i went through the same surgery.  gentle hugs!  you are rocking it!  just remember to go slow and listen to your body.  believe me, that learning and listening to your body is tough! ha ha.  even still (i'm almost 1.5 years post surgery) i forget and push a little too hard, like flying 10 hours to germany and trying to hike all over and drive twisty turny roads at 60mph (like any good german does) and then cant understand why i'm so sore after i get home after another 10 hour flight and 3 hours drive and 2.5 hours standing in the airport and.....(insert face palm here).  it's been a full week now since i got home and i'm finally feeling back to my "new normal" self.

    yes, success stories are hard to find!  when i went into my surgery i was very scared, but knew something had to be done!  "playing jenga" you mentioned-that's exactly it....i could basically fold and unfold my back by pushing on my hip one way or another, not that it was pleasant but sure grossed some people out....plus it was the only way i could stand up a little straight.  forget canoeing, no balance!!!!  ha ha.  anyways, yes, it's a journey.  and one that thankfully not everyone in the world has to have, because i'm sure it would really break some people's will. 

    hang in there!  and please, post lots!!!!  every story has useful information and will help those going forward.  i would never have dreamed that healing after this surgery would take this long, or have some of the things that it has (like random lightning bolts along nerves as they heal etc), and it's nice to know i'm fairly "normal" when i come here and talk with other folks with similar surgeries.  There are a few of us here, and we're all doing amazing, given where we were, and where we *could* be!


    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. 

  • RangerRRanger on da rangePosts: 1,033

    Thank you for sharing your journey TexcellentMegs, positive attitude as yours is everything. These spinal adventures can indeed be terrifying but I'll admit, they seem less intimidating after the 3rd and 4th go-round. You look past the procedure itself and your concern is the recovery.

    Good luck to you and keep us up to speed here on your rapid recovery.

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  • TexcellentMegs 

    Thanks for sharing. It certainly does help those of us about to start our journey. The unknown is what's so scary. 2 more nights and I'll be off!! Really getting anxious! Trying to keep busy, but then I need a rest day or two. Someone just toldc me id need to be dressed at rehab everyday. Not in pjs. So I'm packing more clothes tonight. 

  • Thanks for all your support everyone! 

    Bonnie, I hope your surgery and recovery goes well! Keep us updated if you're up for it. What are you having done, if you don't mind sharing? We all have different experiences. You'll find what works for you afterwards. You can never be too prepared for the unknown.

    I missed out on a week's worth of PT because we had not controlled my pain yet but by the last week I just wore a robe over my gown. It was just easier that way, plus it felt so soft! I almost walked out without my robe one day and they caught me first but I didn't care haha. I didn't want to bother with more than was necessary so much of what I packed went unutilized. My parents stuck to phone calls the first week because I couldn't stay awake long enough to visit. 

    WLLady, I am happy to hear you've done so many things! Sometimes it can be worth the recovery and other times live and learn haha.. I loooong to go hiking. I hope I can fly by November and keep up with my aunts and uncles best than I could last November! 

    I'll probably get some restrictions lifted tomorrow, fingers crossed for good news! 

  • Hi  

    I'm having a decompression and interbody fusion L2 to S1. DDD, herniations, bone spurs, severe stenosis. Apparently arthritis has taken over my entire spine. 

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  • WLLadyWLLady Ontario CanadaPosts: 1,493
    edited 05/30/2018 - 8:49 AM

    bonnielee-good good luck!  arthritis sucks...been there...landed in surgery too.....but i can tell you the surgery gave me my life back, i hope it does for you too! 

    Megs, good luck at the doctors!  a quick word of experience from long distance flying-i just did a 2 week trip from Canada to Germany, 10 hour flights.....it's going to be harder than you anticipate...lots of different movements on a plane compared to a car or walking....it was an awesome trip, but physically exhausting.  i came back more exhausted than i went!  physically that is.  my doctor started me on some naproxen yesterday for the pain i've had since the flight out and it's finally some relief....something swelled and got angry, and i'm 1.5 years post surgery.  so, not saying don't travel, but saying take your time and be careful and if you need to rest then DO.....it was harder than i thought it would be on my body.

    after my surgery there was no way i was wearing a bra....or jeans!  not for at least 3 weeks! LOL.  so if they wanted me dressed for rehab it was in my hospital gown and slippers....with another gown on backwards to cover up my back...lol.  the one rehab person didn't like that so i told her to have her body opened from her shoulderblades to her butt and see how much she's want a bra and waistband around over that incision with the staples....suddenly the hospital gown thing and slippers was just fine....ha ha

    ranger-i am praying for no 3rd or 4rth or 2nd 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. 

  • hi texcellentmegs and welcome to the group. I was fused from t9 to s2 with pelvic fixsation. my story is also posted here. I too was in unbelievable pain right after, plus a weak left leg I could only drag at frist. I have come along way, no walker or cain anymore, just a limp. I am about 15 months post, 4 weeks ago I started back to pt to try for more range of mostion with my legs. yes recovery is not for the weak, you have to work at it, it long and hard. the folks here are wonderful and will help with question or just to verify that your not nuts they went throught that also. we are all here to help. I think with your attitude you will do grate. keep us postes as to how your doing, set backs are normal, there just part of the process. hang in there, we are here for ya

  • TexcellentMegs,

    It is good to have one more person on here who has gone through this. I'm set to have my fusion surgery T4 on down on June 26. I need all the support, sense of humor and positive stories I can hear! The hardest thing for me will be being patient. I've had two cervical fusions and a hip replacement. I know this upcoming surgery will be huge, and it'll be hard not to compare how I bounced back from those, relatively quickly. 

  • By the way.. is this the tool you use to wipe? 

    Bottom Buddy from Amazon

  • WLLadyWLLady Ontario CanadaPosts: 1,493

    Jules - i used one very much like that. It worked well enough but i also found using wet wipes helped a lot too....


    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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