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Susan's surgery at UCSF with Dr. Hu on 19 and 22 March, 2013

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  • hi Susan
    got your note...
    but your message box is full for private messages....

    thinking you must be pretty busy at home, getting adjusted
    to what is different for you to do at home now...

    about service dogs...they can go places therapy dogs cannot
    go....
    i know there is a long wait for service dogs...
    but perhaps you know someone who could do it privately for
    you....train a dog to help you....for now...
    Labs and Shepherds are great service dogs...but other breeds
    are as well....

    OR....if you put your name on a list now, and it took a year or two,
    if you are better by then, which i hope and pray you are, then
    you could just pass the dog on to the next person waiting....

    just a thought.....to me, nothing beats a 4 legged creature with a
    gumdrop nose, big eyes, and a tongue that says "thank you" all
    the time...and if that creature is trained to help humans, even
    better.

    jess...and Spark

    Comment


    • Home

      All, I am home in Portland now. PT, OT, and nurse come to my home. I fell in the bathroom and needed to call my son to get me up with my brother helping. Just a little bruised . Had a bad day yesterday dealing with self-pity and regret. No response from the hospital on my concern about quality of care.

      6 week appointment with Dr. Hiratzka went well. When I arrived in a wheelchair, he said that he thought that I "would arrive on a stretcher". He took a lot of time and explained my surgery and failure problem. He put in longer screws and put them in straight as opposed to angled. Of course I am worried about another "failure" and he tried to be realistic and supportive.

      Still on Coumadin for my pulmonary embolism, so I will not plan to get in a big auto accident. Being mostly housebound is the pits. I want to DRIVE. Having said that.....how would I get out of the car and into my wheelchair?

      Susan
      Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

      2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
      2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
      2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
      2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
      2018: Removal L4,5 screw
      2021: Removal T1 screw & rod

      Comment


      • Glad that you are home

        Melissa
        Melissa

        Fused from C2 - sacrum 7/2011

        April 21, 2020- another broken rod surgery

        Comment


        • Oh Susan - how dreadful to fall like that. I'm so sorry! Aren't you glad your son and brother were nearby to help you up! Of course you had to have a pity party for all of this. Who wouldn't??? You've been through the mill, and so many times! Sorry about the non-response from the hospital...

          That is good that your 6 week appointment went well and he was reassuring and spent plenty of time with you. I understand about the driving bit. I just had cataract surgeries, 3 weeks apart, and couldn't drive all that time during that time, as one eye was "blind" (without glasses) and I had no depth perception. Tried popping the lens out of my glasses, so my eye without the surgery could see, but that made me see double. Yikes! You are probably confined longer than that, and time does go by slowly. I listened to some books on CD since I couldn't see well. You have a lot of other options to occupy your time. I have not been out much at all even still (my first one was Aug. 27) as I still don't have new glasses, but I can see far vision well, so at least now I'm ok to drive.

          At least you are home. There's no place like home. A very famous phrase indeed. (big smile) Best wishes -- and my thoughts and prayers that this will recovery will speed up a bit and be very successful.
          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


          • So sorry to hear about the fall, Susan. And anybody in your position would have a pity party. Vent all you want here, we are here to listen and understand.
            I am stronger than scoliosis, and won't let it rule my life!
            45 years old - diagnosed at age 7
            A/P surgery on March 5/7, 2013 - UCSF

            Comment


            • Embarrassed to say that I kissed the bathroom floor again. Bummer. Fortunately, I usually just slide to the floor, but it is really difficult to get up since my legs are numb and weak. We have hired a CNA for 2 days a week to give my husband a break. Susan
              Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

              2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
              2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
              2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
              2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
              2018: Removal L4,5 screw
              2021: Removal T1 screw & rod

              Comment


              • Hello:

                I am glad to hear you are home. I haven't followed this thread all along so I may have missed something, so when you feel well enough would you please give us an overview of what happened to you and let us know if it was the side effect of the original surgery or whatever the surgeon told you. I have read on other forums accounts of people that have had similar complications from Scoliosis surgery, maybe they had the same thing. Or maybe you have something unrelated to the surgery. Anyway, it sounds like you are no longer paralyzed thank goodness! Thank you, your information will help the rest of us stay informed. Also, I will say a prayer for you. Thank you,
                1st surgery: Fused T1-L3 in 1987 with contoured Harrington Rods. Rods broke at top.
                2nd surgery: Re-done two weeks later; fused C7-L3. Left in chronic pain.
                3rd surgery: Hardware removal 1997, but still pain for 30 years.
                4th Surgery: Fused to the sacrum in 2016. Came out of surgery with left foot paralysis. (Drop Foot) Can't walk on my own.
                I'm blessed to have found my peace and reason to live not from a husband or kids (I have none) but from God and within myself.

                Comment


                • Hi Susan. How are you doing? The fall had to be so scary. Your surgery wasn't that long ago. Is the walking improving?what has your original surgeon said? We all hope each day is an improvement over the day before.
                  T10-pelvis fusion 12/08
                  C5,6,7 fusion 9/10
                  T2--T10 fusion 2/11
                  C 4-5 fusion 11/14
                  Right scapulectomy 6/15
                  Right pectoralis major muscle transfer to scapula
                  To replace the action of Serratus Anterior muscle 3/16
                  Broken neck 9/28/2018
                  Emergency surgery posterior fusion C4- T3
                  Repeated 11/2018 because rods pulled apart added T2 fusion
                  Removal of partial right thoracic hardware 1/2020
                  Removal and replacement of C4-T10 hardware with C7 and T 1
                  Osteotomy

                  Comment


                  • Originally posted by Tableone View Post
                    Hello: I haven't followed this thread all along so I may have missed something, so when you feel well enough would you please give us an overview of what happened to you and let us know if it was the side effect of the original surgery or whatever the surgeon told you.
                    Tableone,

                    Susan's thread well explains exactly what she is experiencing. It is unreasonable to ask her to recap it for you when she has already written it. Just saying...
                    Gayle, age 50
                    Oct 2010 fusion T8-sacrum w/ pelvic fixation
                    Feb 2012 lumbar revision for broken rods @ L2-3-4
                    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


                    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
                    2010 VBS Dr Luhmann Shriners St Louis
                    2017 curves stable/skeletely mature

                    also mom of Torrey, 12 y/o son, 16* T, stable

                    Comment


                    • Susan, I hate it when you kiss the bathroom floor....

                      You know there are devices that will help....it all depends on your bathroom size and exactly what you need. A Hoyer lift makes things easier with any lifting....It really beats the lifting strap. Some of the strap setups need customizing, some you can lay in the wheelchair....

                      I take it your arms are getting stronger....wouldn’t want to arm wrestle you, I would probably lose.

                      We are all hoping for any reports on any leg strength improvement....

                      Try to stay strong through all of this....

                      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


                      • Susan, there are quite a few different types of lifts out there these days. If you could get someone from a medical supply company to come out, they can help with the selection. Here is another style that might work well....you don’t want to be kissing the bathroom floor anymore.....Renting from the start is easy, it help with selection. If you don’t like it, just call for another style of lift.
                        http://www.rehabmart.com/product/qui...ift-35867.html

                        Of course every nursing home has a huge pile of these devices in their basements. I know because I have seen it. These devices have no value and they throw them out.....

                        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


                        • please keep this forum friendly and let people speak or not speak for themselves...we are all going through a lot of painful situations here....it doesn't help when you post messages like that. If the OP doesn't want to answer, she doesn't have to.

                          Comment


                          • Moonglow, I wasn't being unfriendly in any way, just pointing out the obvious. To openly state you haven't kept up with someone's thread and then ask for them to recap it for you, especially when they are recovering from a spinal cord injury, is beyond the pale. The forum rules state something to the effect of reading existing posts before asking questions whose answers may have already been discussed in prior posts. Enough said.
                            Last edited by leahdragonfly; 10-12-2014, 06:16 PM.
                            Gayle, age 50
                            Oct 2010 fusion T8-sacrum w/ pelvic fixation
                            Feb 2012 lumbar revision for broken rods @ L2-3-4
                            Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


                            mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
                            2010 VBS Dr Luhmann Shriners St Louis
                            2017 curves stable/skeletely mature

                            also mom of Torrey, 12 y/o son, 16* T, stable

                            Comment


                            • I just don't think you should have come down like that on another forum member who was just asking some questions...and expressing sympathy to the OP...and the questions were not addressed to you...

                              Comment


                              • We're all entitled to our opinions. I do have to wonder why you are protesting so when the original post doesn't involve you. I am done posting to this topic and now return this thread to Susan.
                                Gayle, age 50
                                Oct 2010 fusion T8-sacrum w/ pelvic fixation
                                Feb 2012 lumbar revision for broken rods @ L2-3-4
                                Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


                                mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
                                2010 VBS Dr Luhmann Shriners St Louis
                                2017 curves stable/skeletely mature

                                also mom of Torrey, 12 y/o son, 16* T, stable

                                Comment

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