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surgery on June 7th

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  • #16
    Great to hear from you, Lori. I know we had private messaged a while ago when you were still considering surgery. I wasn't at HSS but even at NYU it took a while to get nursing assistance at night. If I had it to do over again (heaven forbid), I would definitely have paid for private duty nursing at night. You're in the uphill climb right now, but it will keep getting better. Some days are better than others, but keep taking your pain meds and walk as much as you can. I was recovering in the dead of winter and made lots of laps around my dining room table. Swelling took a long time to go down for me. I think if you've had a lot of blood/fluid transfused, the swelling is even worse. The body releases it from the tissues very gradually so meanwhile you look and feel like a beached whale!

    Just wanted to let you know I was thinking of you. Stay in touch and don't hesitate to vent and ask questions! I was addicted to this forum during my recovery weeks.
    Take care and let yourself be pampered right now!


    Anne in PA
    Age 58
    Diagnosed at age 14, untreated, no problem until age 50
    T4 to sacrum fusion
    63 thoracic now 35, 92 lumbar now 53
    Dr. Baron Lonner, 2/2/10
    Am pain-free, balanced, happy & an inch taller !

    Comment


    • #17
      Hi Lori...

      Hang in there. It truly will be better soon. Sounds like they put you through the mill!

      I got acclimated to my new posture very quickly. I think it was only a few weeks. As to how often to walk, the more the better in general. Walking will definitely help you with the swelling. I set a goal for myself in terms of exercise, and it seemed to help motivate me. So, my advice is to start out slowly, and build on it by increasing distance, time, and speed.

      Regards,
      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

      Comment


      • #18
        Thank you everyone for all of your well wishes!
        Jennifer: I am very glad to hear the "boot in the low back" feeling goes away quickly. It makes me very cranky!

        Boomergal: I would definitely get private duty help. If you have anyone medical in your family, that can stay, I would suggest that. An RN for 12 hrs. is $990, and a private room is $875 a night. The semi-privates are tiny, no privacy, and I had a very loud, very demanding roomate. The private room was a godsend.

        Karen: Dr. B. was president of SRS at some point. He introduced Dr. Lenke as a colleague of his, there to do lectures and observe.

        JenM: I was fused T4-S1, w/bilateral pelvic fixation. The surgery lasted 8 hrs. I don't think Dr. Lenke would have been able to assist, since he is probably not licensed in NY. I would love to talk to you soon.

        Anne: It is funny you mentioned the "beached whale" analogy. Every time I rolled over I would announce "Beached whale alert"! Of course, I was also seeing orange alligators, hot pink flip flops with "Pass Gas" written on them, etc. The wonderful drugs! My sister wrote everything down, and it is some pretty funny stuff.

        I am soooo happy to be part of the "other side" club! Hugs to all, Lori
        Lori in PA, 52 yrs. old
        T54/L72
        Surgery 6/7/11, T3-S1, all posterior, with pelvic anchors
        Gained 2 inches!
        Dr. Boachie, HSS, NYC
        12/10/13 Hardware Removal for infection
        Lost 2", gained PJK!

        Comment


        • #19
          Lori

          Congratulations! You made it.

          Funny, I never had problems getting the nurses....I was a little rough on the guys up in ICU from the start so they relayed the info to the other nurses on the wing, and I didn’t have problems getting the nurses to come. I really had no recollection of this happening since I was in the “twilight zone”. One thing that happened was they offered to bring a pile of nursing students over from the college for extreme training with Ti-Ed, and to tell you the truth, I loved it. Having so many there was great since the biggest problems in the hospital are usually the little things.....talking...communicating your feelings really helps so much. Being left alone is the worst thing that can happen in the hospital.

          You know what to do now? Yes, that’s right, get up from the computer because it hurts to sit for more than 4 minutes, and walk a little. Just a little, not a lot, and many times during the day. It will keep your plumbing moving which is critical while taking meds. Drink plenty of water and try to hang in there, the first few weeks are the hardest part, like a tough chapter in a book, you will get through it.

          Try to keep notes on EVERYTHING. Keep a daily journal on meds, diet, bm, walking, water, pain etc. and make sure you eat! Eat protein. Your body has been hit hard and is going through some major adjustments right now....if you have any questions, ask them here. Your going to do just fine.
          Ed
          49 yr old male, now 63, the new 64...
          Pre surgery curves T70,L70
          ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
          Dr Brett Menmuir St Marys Hospital Reno,Nevada

          Bending and twisting pics after full fusion
          http://www.scoliosis.org/forum/showt...on.&highlight=

          My x-rays
          http://www.scoliosis.org/forum/attac...2&d=1228779214

          http://www.scoliosis.org/forum/attac...3&d=1228779258

          Comment


          • #20
            Oh, yeah, a quick question. I can't seem to be comfortable in any chair I try, even with multitiudes of pillows. I don't want to be lying down all of the time. Any suggestions? Thanks
            Lori in PA, 52 yrs. old
            T54/L72
            Surgery 6/7/11, T3-S1, all posterior, with pelvic anchors
            Gained 2 inches!
            Dr. Boachie, HSS, NYC
            12/10/13 Hardware Removal for infection
            Lost 2", gained PJK!

            Comment


            • #21
              I'm like Ed, in total jaw-dropping wonder (not good wonder) each time I hear about the care people received at HSS. I never had to wait more than a few minutes at Rush-- and they were so good to me. I even sent them--the ortho wing staff-- a Christmas gift (Fanny May chocolates, YUM!) (West cost people- that is similar to See's) 7 months later, I was soooo impressed with their wonderful care. Dr. H had two "fellows" studying under him at the time, so they stopped by to see me fairly often as well. Also, our rooms were small, but they were all private. I guess I didn't realize how good I had it.

              I also kept a diary of my meds taken, etc. Well, my husband kept it at first. You don't want to get mixed up. I didn't do the BM thing though, Ed. It never occurred to me! I know I emailed or phoned my scoli nurse when I was having problems and she would tell me what to try. I did journal my walking and things like that, but just on my calendar--walked 1/2 hour, etc.

              When I first got home from the hospital, both OT and PT came to my house a couple of times (and I live in the boonies) to make sure I was off to an ok start and that my house was set up ok for me to maneuver in, and OT made suggestions about some accommodations... That's when I first got a few stretchy bands from PT to strengthen my arms, and they had me rise up on my legs while holding onto the kitchen counter, and several other very basic exercises. I was SO weak. Are you able to have some help in that way?

              It sounds like you are off to a great start! Welcome to the other side! It will just keep getting better for you, honest! Walk a little more, as your strength allows. Pace yourself so you don't overdo. Listen to your body-- it will tell you if you're doing too much. Take care!
              Last edited by Susie*Bee; 06-18-2011, 12:18 PM.
              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

              Comment


              • #22
                What part of sitting up bothers you? The whole back, pressure on the lower back, or what? Is your seat up high enough so that your upper legs are parallel with the ground? I don't know if that would make a difference or not, but low seats always bothered me. And I still like using a coccyx cushion (it has a wedge cut out of the back for your tailbone) because for some reason my tailbone kept hurting after my surgery... It is NOT the same thing as a donut cushion. The hole in those are in the wrong place and are meant for other problems...
                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

                Comment


                • #23
                  Lori congrads on your surgery
                  Kara
                  25
                  Brace 4-15-05-5-25-06
                  Posterior Spinal Fusion 3-10-10
                  T4-L2
                  Before 50T
                  After 20T

                  Comment


                  • #24
                    I found sitting upright in a straight backed, hard chair was the most comfortable for a few weeks. I did have tailbone pain for a couple of weeks and sitting bolt upright seemed to take the pressure off that. If you have a straight backed (but padded) chair, use that for a little while and see how you go.

                    My comfy chairs and sofa were a no no for a while, but I love them again now.
                    Surgery March 3, 2009 at almost 58, now 63.
                    Dr. Askin, Brisbane, Australia
                    T4-Pelvis, Posterior only
                    Osteotomies and Laminectomies
                    Was 68 degrees, now 22 and pain free

                    Comment


                    • #25
                      That's funny, Jennifer-- my most comfortable place to sit was my couch, but we had bought a new one, so it was firm and had a seat height of 21". With cushions behind so I didn't have to lean back any, and plenty of other pillows if I needed them, it was great. I had a nice tray/table my husband picked up at the drug store that could slant if I wanted it or just keep it flat.... and I planted myself there with my laptop and my books and my cross-stitch. There's a picture of me with my little table in a link in my signature area.
                      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

                      Comment


                      • #26
                        Yes, I've seen that pic Susie, you do look very nicely set up there!

                        I think the main thing is that the seat must be firm and being bolt upright keeps the weight off your tailbone. I often sit bolt upright even now and it's perfectly comfortable though people rush to stick a cushion behind me (so I must look uncomfortable which I assure people I am not.)
                        Surgery March 3, 2009 at almost 58, now 63.
                        Dr. Askin, Brisbane, Australia
                        T4-Pelvis, Posterior only
                        Osteotomies and Laminectomies
                        Was 68 degrees, now 22 and pain free

                        Comment


                        • #27
                          Congratulations for making it to the other side, Lori. I have been praying for you and want to thank you for keeping up on what's happening with you.

                          Glad you mentioned the hospital adventure, I have been told I will have a private room and it sounds like that will be a Godsend with this surgery.

                          Continue to keep us posted...and we'll continue to prayer for all the pain and weird feelings to subside.
                          Discovered scoliosis when 15 years old.
                          Wore Milwaulkee Brace for 1.5 years.
                          Top curve 85 degrees, bottom curve 60 degrees

                          Surgery completed August 23, 2011 (during an earthquake, can you believe that?)
                          Dr. Charles Edwards, II
                          The Spine Center at Mercy Hospital in Baltimore, MD
                          Before and after xrays:
                          http://www.valley-designs.com/myspine

                          Comment


                          • #28
                            Hi Lori...

                            I went through a long stretch where no chair was comfortable, and a long stretch where only my recliner was comfortable. It was exhausting, because I also wasn't comfortable in bed.

                            I have no advice, but hope that you get through this period quickly.

                            Regards,
                            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

                            Comment


                            • #29
                              Thanks for all of the suggestions. The main reason I can't sit is the tailbone pressure, and the intense feeling of being pushed forward. I think the coccyx pillow sounds like a good idea. I am only comfortable on my back in bed, so I worry that I am not changing position enough. I think I am trying to cut back on my pain meds too quickly also. Today I went almost 7 hrs. between Percocet's- not very smart. I am sure, each day, I will learn something new.
                              Lori in PA, 52 yrs. old
                              T54/L72
                              Surgery 6/7/11, T3-S1, all posterior, with pelvic anchors
                              Gained 2 inches!
                              Dr. Boachie, HSS, NYC
                              12/10/13 Hardware Removal for infection
                              Lost 2", gained PJK!

                              Comment

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