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how do you chronicle your surgery & recovery?

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  • how do you chronicle your surgery & recovery?

    just wondering, how do/did you document your surgery and recovery? is this an appropriate thing to scrapbook? did you ask family members to take pictures? can someone take pictures in the operating room, or is that totally off-limits? did you ask your doctor for your pre-surgical and post-surgical x-rays, or is it even appropriate to keep something like that as a keepsake? did you make a journal? did you make a webpage with pictures and info to share your story?

    i've never had surgery before, and nobody i know personally has ever had major surgery, so i'm wondering how to go about recording this whole process. i'm just trying to make a difficult time a little more fun. like i said, i've never had surgery before, and may never have one again, so i want to do it right the first time.

    thanks muchly.

  • #2
    Facebook Updates

    When my son had his VBS surgery I took pictures and posted them on Facebook with updates on his progress. It was a wonderful tool. I was able to keep friends and family informed on his progress. It was very cathartic for me as well.
    Teresa
    Age 46; Diagnosed at age 11, 4 years Milwalkee Brace
    62/66 degrees pre-op
    Surgery 6/09/10 with Dr. Lenke - T4-S1, 2 cages
    20/17 degrees post-op
    SCOLIOSIS RUNS IN THE FAMILY!
    Mom to:
    Ryan, diagnosed @ 13 w/24 degree curve; Lauren diagnosed @ 10 w/10 degree curve; Bryce diagnosed @ 9 w/19 degree curve. Bryce underwent vertebral stapling 5/11/09, 28 degrees pre-op to 7 degrees one year post-op. Vertebral Stapling ROCKS!

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    • #3
      Sacket...

      You can ask the surgeon if you can take a photo of the OR, but if you get an infection, you may always wonder if that's the reason. :-)

      --Linda
      Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
      ---------------------------------------------------------------------------------------------------------------------------------------------------
      Surgery 2/10/93 A/P fusion T4-L3
      Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

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      • #4
        I started a blog as a way to chronicle and a way for family and friends to keep up on my journey. We took pictures in the hospital, before and after, not in the operating room. Did get before and after xrays from Dr. too. It is a journey you want to capture. The first 2 weeks are very fuzzy due to pain meds, so it's interesting to see the pics.
        I also posted some pics on my facebook and post updates for friends.
        Shari - 55 years old
        Pre-Surgery 62 degree thorasic curve with shifting.
        Post op 13 degree curve.
        Successful surgery 4/15/10, T3-L2 fused.
        2nd surgery to reopen incision 10" to diagnose infection, 5/18/10
        Beaumont Hospital, Royal Oak, MI - the late Dr. Harry Herkowitz
        www.scoliosisthejourney.com

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        • #5
          I have not put everything together yet. My Journal titled 'I won't be resigned to wearing court shoes!' may hopefully get put together this year after my one year anniversary. I have kept everything related to the surgery in my top bedside draw. Empty Endone box, before and after photos, medication diary (short diary as i was off all meds by day 15) literature from the hospital, photos of xrays, hospital tag, flower cards etc. My surgeon does not allow photos in the OR. I will though ask my surgeon at the one year checkup if i can have the theatre notes or a copy of his notes about my surgery and i may even ask the hospital if i can photocopy any notes i feel will compliment the journal. I will also ask for a photo with my surgeon at this appointment.
          There are a number of ways you could save these memories, just let the talented person inside you be your guide!
          Vali
          44 years young! now 45
          Surgery - June 1st, 2009
          Dr David Hall - Adelaide Spine Clinic
          St. Andrews Hospital, Adelaide, South Australia
          Pre-op curve - 58 degree lumbar
          Post -op - 5 degrees
          T11 - S1 Posterior
          L4/5 - L5/S1 Anterior Fusion

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          • #6
            Sacket, I was planning to do the same thing. I already posted my pre-surgical x-ray on facebook, mostly for certain friends that didn't believe me. Also, I plan on making a scrapbook so that my daughter (and any future children) can see what I went through. My favorite picture that I anticipate taking is the one where I'm going to make a mark on the wall of my height before and after. Dr. Vora expects me to gain around 3 inches, which would get me over the 5' mark... it's a dream I've had for 15 years.
            Tiffany K
            I'm not short, I'm fun size!

            29 years old
            4'11", never braced
            Pre-surgery, 52° T6 to T12, 35° T12 to L4
            T1-L2, Posterior 8/5/2010, gained 1"

            http://www.facebook.com/album.php?ai...9&l=03212f3e17

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            • #7
              Absolutely - this is not a weird question at all. My wonderful hubby was with me at my side the entire time with camera in hand. Not in the OR of course. But immediately afterwards I remember looking at him as he was snapping pictures. And, as I am recovering these days I absolutely love those pictures - all of them. Some of them I can hardly recognize me.....Boy, good thing I didn't know I looked like that!!! Hahaha! But, he was a true gem to me the whole time. He stayed with me (with his trustly little camera!) the whole time - day and night. Hey, I even had him snap a picture of my doctor(s), with their permission of course. And, someday when I get enough energy, maybe this winter, I plan on putting a scrapbook together. I even have the old hardware my dr removed so he could put in new. I had undergone surgery 6 years prior for a slipped disc and dr wanted to take that hardware out and put in his own with my fusion - whatever he wanted I said. Boy, I have a whole bag full of nuts and bolts (Ha!) that he removed. Not sure what I'm going to do with that yet or how to get into scrapbook - but I'm sure glad he saved it for me. Does this make me weird? My recommendation, therefore, is to take as many pictures as possible - you'll be glad you did.
              Rita Thompson
              Age 46
              Milwaukee Brace wearer for 3 years in childhood
              Surgery Mar 1st - 95 degree thoracic curve
              Surgery by Dr. Lenke, St. Louis, MO
              Post-surgery curve 25-30 degree

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              • #8
                I was pretty ridiculous...I had a blog and posted an entire album on FB to share with friends and family. It's nice to look back and read & view pictures of all that I went through. Sometimes I forget!

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                • #9
                  I blogged, and have kept blogging..but since finding out we were expecting I fell off the wagon a bit....but am slowly getting back on!
                  My One Crooked Momma blog
                  Fused T1-L1 May 21st 2008
                  From 51* to STRAIGHT! Thanks Dr. Shelokov @ Baylor

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                  • #10
                    I made a scrapbook. With scoliosis tending to be hereditary, I figured that a long time down the road maybe someone might want to know what great-grandma had wrong with her-- or had surgery for, or whatever. I chronicled it all-- from my initial diagnosis a few years ago that led to Dr. H in Chicago, the pics of my x-rays, my blood donations (all 4 of them), the op report, pics from in the hospital (both dreadful and later on), my recovery at home, the equipment/tools/"helps" I used here at home, my PT over the months (including pics of me with my wonderful physical therapist Luis, and so on. I even have a section about the forum with pics of some of my scoli bros and sisses. I figured that with something solid like a scrapbook, it would still be around regardless of technology advances. And with pictures and other visual fun things (if you can call them that) it wouldn't just get lost in a file drawer somewhere like some medical history report. Plus it was rather healing, in a sense, to put it all down on paper. Whenever I felt discouraged about slow progress, I could flip through the pages and remember how far I've come. The only difficult thing was trying to lean over the table to work on it. Ha ha. I have a hard time still doing things like that.

                    I just finished my school year-- HOORAY!!!! But am feeling really dead and terribly achey from scanning about 14,000 books in my school library. My back keeps popping and I hope that is not a bad sign. I am 3 years out from my surgery...

                    Anyway, I love my scrapbook.
                    71 and plugging along... but having some problems
                    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
                    5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
                    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

                    Corrected to 15°
                    CMT (type 2) DX in 2014, progressing
                    10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

                    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

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