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What Was the Most Difficult Part of Recovery?

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  • What Was the Most Difficult Part of Recovery?

    From your personal experience, what was the most difficult part of recovery process – physical or emotional? Pain doesn’t scare me as much, but being disabled and dependent on other people does. I dread being a burden on my husband; I dread being needy and helpless, I hate asking people for help… I am a strong-headed independent woman. Can someone relate? If so, how did you tame your ego and came to terms with letting /asking other people for help?
    Last edited by Irina; 07-09-2012, 09:18 PM.
    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

  • #2
    Hi Irina...

    I don't think I can answer that question directly. I think a lot of us are very independent, and thus it's hard to ask for help. I think the emotional part of it comes in one big hit right at the start of recovery, while the physical pain can, and probably will, go on for at least week if not months or years. After you've asked for help a few times, it actually gets easier. And, if you're like me, you want people to ask for your help, so it's sort of an interesting experience to be on the other end. It definitely made me value myself a little more.

    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


    • #3
      I lined up tons of help ahead of time, so that I really wouldn't have to ask in the immediate post-op. They would just do it. My mom lived with us, we got a cleaning lady, and neighbors brought meals for weeks. Now that I'm through all that, it's a little difficult just asking for the little things. "Honey, will you please shift the wet laundry to the dryer?" "Can you help me buckle my sandals?" "Will someone bring in the cat litter from the car?"

      The hardest part for me has been the fear that the pain won't go away. Not the actual pain, but the idea that I could have to live with it indefinitely. (I was not in much pain pre-op.)

      Best,
      Evelyn
      age 48
      80* thoracolumbar; 40* thoracic
      Reduced to ~16* thoracolumbar; ~0* thoracic
      Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
      Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
      Not "confused" anymore, but don't know how to change my username.

      Comment


      • #4
        I just let myself enjoy being pampered!
        It depends on how you look at it, you deserve to be pampered and taken care of after being through such major surgery-wouldn't you do the same for someone? I found that thinking of it like this helped me to not feel like a burden. Yes there were low times when I wanted to do certain things but most of the time I let myself not being cared for while it lasted!

        I can honestly say that for me the physical pain was worse than the emotional, I only had a couple of meltdowns, in fact now I'm 20mths on and still in considerable pain I have more meltdowns than I did in early recovery-it's frustration that I still have pain.
        Fused T2-L4 with costoplasty on 3/11/10

        Comment


        • #5
          I really didn't stress out too much about not being able to do things.The David Wolpert book was my bible and I was pretty well prepared about what to expect. My husband was wonderful throughout the whole process and although we had things like meals and support from friends and neighbors, the care burden was pretty much on him. Our parents are deceased and we don't have children of our own but we made it work. We were very aware of the limitations I was going to have and accepted that it was literally a "short term pain, long term gain" situation. As far as physical pain, there were some long nights in those first few weeks--I just didn't do well at night. Could not get comfortable in bed, muscle spasms, etc. and we both lost a lot of sleep. That and the swelling which took a while to go down were probably the worst physical aspects. I was fortunate that I had an entire semester off from my teaching job so I wasn't worrying about being recovered enough to go back to work. I am a firm believer that mental attitude greatly impacts the physical outcome. I tried to stay positive and kind of let my body tell me when it was ready to do something. When I think about how much better my life is now, it really puts those early days of pain and discomfort in perspective and for me, it was so worth it.


          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


          • #6
            I agree where you need to plan ahead. If you're married, yes you will depend on your spouse. If not married, you have friends or nearby family whom you have to support and sometimes they will need to support you. It's what you do for loved ones.

            The first few weeks you will be using some pretty heavy duty drugs--you will need someone with you staying over night for the first week and checking in on you at least several times a day during the next few weeks.

            Yes, the pain, monitoring your drugs (keep a notebook by your bed), the resulting "output" problems and learning what you can do with your body and what you can't do.

            Independent is good, but you can't be that all of the time. Arrange for help ahead of time--in a way that is being independent.
            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


            • #7
              Thank you everyone for your comments and suggestions. They are very helpful.
              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


              • #8
                Hi Irina

                I think I remember you mentioning that you are from Sacramento....

                I would recommend calling up or e-mailing Diane Gums to see when the next scoliosis meeting is....Usually, Dr Picetti speaks, you can ask many questions, and meet other scoli’s.

                http://www.scoliosislinks.com/SupportGroups.htm

                Let us know, maybe I will come down
                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


                • #9
                  This may sound kind of corny, but it helped me. I typed up and enlarged several positive quotes from David Wolpert's book and posted them in the bedroom right before my surgery so that I would read them post-op and think about the big picture and not my current level of dependence and post-op discomfort. My husband was a huge help with taking care of me and preparing meals. Friends also brought food which was a nice break for John and good for me to see people and hear raving reviews about my new, straight back. I also had grabbers all over the house which helped reduce some frustration.
                  Karen

                  Surgery-Jan. 5, 2011-Dr. Lenke
                  Fusion T-4-sacrum-2 cages/5 osteotomies
                  70 degree thoracolumbar corrected to 25
                  Rib Hump-GONE!
                  Age-60 at the time of surgery
                  Now 66
                  Avid Golfer & Tap Dancer
                  Retired Kdgn. Teacher

                  See photobucket link for:
                  Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
                  Before and After Picture of back 1/7/11
                  tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
                  http://s1119.photobucket.com/albums/k630/pottoff2/

                  Comment


                  • #10
                    Hi Everyone

                    In answer to the hardest part of surgery, I would say being patient with yourself. You do have to take time and do things differently. It does take all of a year or more to feel like yourself. Just allow extra time to do things like a shower, go to store,get in and out of car,etc. You just can't rush this! It is a process!
                    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

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