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  • My experiences....

    My experiences
    Hello everyone, finally I feel strong enough emotionally and physically to write an account of my experiences on this forum – wow what a journey.
    I truly wanted to leave a post that anyone could read that would be helpful but find it hard to put everything into words - thank goodness for all you regulars who explain it so well. The recent post about energy levels has many excellent comments and makes good reading for those just about to have this surgery I nodded my head and said yes, yes to many of the comments.
    My surgery was done Thurs 4 Sept posterior only (which I was relieved about) my surgeon had said that he may have had to do anterior release at same time. I was fused T3 – L1 for an approx 67 degree upper thoracic curve. (btw I am 41yrs old). I was fitted for my brace immediately after my op so knew nothing about that bit and was given in to wear a few days later. I only wear it when up and about not to sleep in.
    The thing that has been difficult for me is how everyone here is so positive and post of their excitement of getting it done, until today I haven’t been able to truly say to myself, hey I’m glad I’ve had this done, but lets just say I’m kinda getting there (common sense tells me I did the right thing cos it was progressing)but I have not over the years had massive amount of pain – although this was increasing specially over the last 6-12months. I remember thinking s*** I don’t remember reading it would hurt this much, that I would be so scared – the deep breathing def helped calm me at certain times!
    I was in hospital for 8 days and things progressed quickly though the week, hdu for 24 hrs, then moved to ward (that was scary just sort of shut my eyes and kept thinking no going back now, got to get through this, be brave etc). Epidural removed after a few days, then the morphine, drips etc and finally catheter a few days before I went home. Had a bit of a problem with being constipated but this soon sorted itself out. A wonderful nurse washed my hair about day 4 which was lovely (got out all the sticky glue left from where the electrodes were stuck)
    I have slept and been on my back for so much of the last month and worried whether this was right – but tried to listen to everyone saying just do what your body tells you to!
    I am very lucky to be well supported, firstly by my wonderful husband, 2 kids (12 and 8) sisters, parents, family and friends who have all helped me so much – an endless supply of meals, flowers, chocs, buscuits and offers of help – I have felt very loved and cared for.
    Today my hubbie has gone back to work (it will be 6 weeks ago on thurs) and I am feeling I have turned a corner in my recovery. (hence the long post!) even went for a drive and quick walk round the supermarket (my sister was there – her face was a picture when she saw me!)
    So with all the unexplained tearful moments, painful, aching days I am on the mend….and still getting out to walk everyday since I came home (ever if its for 10 mins) I thank everyone who posts on this forum – you have all been so helpful and continue to be.
    Attached are my before and after pics(scar at 2 weeks) and my 'before' xray. I will post my after xray after I see my surgeon at my 8 week check up.
    If anyone has any questions, please feel free to pm me.
    Good luck to Debbei and everyone else due to have their op – it really is good to be the other side!
    Louisse
    x
    Diagnosed aged 17 thoracic curve of 40°/48? given brace worn for short time but was then told that I had stopped growing and it wasn’t likely to get worse. Follow ups ‘got lost in the system’ and I chose to ignore until age approx 33, after two children. Now nearly 42yrs curve was progressing (last xrays 67 degrees) and increasing 'backache' so surgery (posterior T3 - L1) went ahead beginning of September 2008 in UK - thoracic curve now approx 20° and I look a lot straighter!

  • #2
    Hi Louisse,

    Thanks for sharing your experiences. I just know this post will be valuable for people heading into the surgery for the first time.

    Isn't the first hair wash / shower just magnificent?! Exhausting & painful - but wonderful And how great that your surgeon didn't need to do the anterior release as well.

    Recovery is definitely a rough ride, but well worth it (for the great majority of people)...I'm so glad you're starting to feel better & like this was worth it for you. 6 wks post-op really isn't far along - you'll start feeling even better over the coming days & weeks.

    I'll look forward to seeing your post-op pics. Do you feel as though you're a lot straighter?

    Best of luck to you for a smooth path in your remaining healing. Don't forget to feed up on those chocolates - you know they have magical healing powers, right??

    Take good care & keep us posted when you can (if you want).

    Comment


    • #3
      Louisse,

      Glad to hear you are on the mend and have such great family support! That is so important to help you heal properly.

      As discombobulated said, chocolate is magic!

      Brad
      Surgeries July 26th & August 3rd 1983 (12 years old)
      Still have 57 degree curve
      2 Harrington rods
      Luque method used
      Dr David Bradford
      Twin Cities Scoliosis Center
      Preop xray (with brace on)
      Postop xray

      Comment


      • #4
        Louisse,

        Wow I am happy things are going good for you. Did you drive yourself to the store? Just curious. Medicine has advanced to much since I had my surgeries. Just can't wait to hear more. Take care!
        Adrienne
        1991 T4 - T12 Fusion
        1993 Rod Removal
        1999 T4-L4 Fusion (7 rib thoracoplasty)
        2002 Rod Removal 58;49 degrees
        Denver, CO; Dr. John Odom
        Rocky Mtn. Spine Center

        Comment


        • #5
          Wow, cool scar. It is great you are doing better. I suppose the only way to go now is up! Congrats on your decision and am sure your life will be so much better because of it
          45L/40T
          Surgery 25/1/2010
          Australia

          Knowthyself

          Scoliosis Corrected 25/1/2010 by Dr Angus Gray, Prince of Wales Private Hospital, Sydney. Fused T3-L4.

          Comment


          • #6
            Louisse,

            The first stage of recovery can be so, so challenging. Now you should start feeling better and better, as long as you don't try to do too much, too quickly. Just remember, there will be 'those days' when you will wonder, "Have I progressed?" You'll really see your progress over time.

            When I look at your "before" x-ray, I think - YES, you really did need that surgery and YES - your pain would have gone up, up, up if you'd waited. My pain started really impacting my life around the age of 45 and it took over my life by age 52.

            Your scar looks great and so does your tattoo! My primary care doctor suggested that I tattoo some ivy vines crawling up around my scar!

            Glad to get a full update from you, Louisse!
            Ginger Woolley

            Oct 2018, L3 - S1, Anterior & Posterior, Dr Sigurd Berven, UCSF, San Francisco
            ******
            May 2008, T4 - L3, Dr. Ohenaba Boachie, Hospital for Special Surgery, NYC
            ******
            Sept 1967, T4 - T 11, without instrumentation, Dr Thomas Brown, Stanford

            Comment


            • #7
              Thank you Louise. Every experience is muchly appreciated by those of us on this side of surgery, wondering and worrying. We need to know it all, the good, the bad and the ugly.

              Hope your recovery continues smoothly and the day comes when you say, "that was the best thing I could have done for myself!"

              Cheers,
              Jen
              PS Do you feel a lot straighter?
              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


              • #8
                Louise,

                I am so thrilled to read your update right now, as I'm going in this morning. I'd say my scared/excited ratio is now about 50/50. That's probably the best it's ever been, and reading your post has helped put me there. I'm so glad that you are feeling better, and I can imagine how you feel after your drive and stroll thru the supermarket. Keep feeling better and I'll compare notes with you later.
                __________________________________________
                Debbe - 50 yrs old

                Milwalkee Brace 1976 - 79
                Told by Dr. my curve would never progress

                Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
                Pre-Surgury Thorasic: 66 degrees
                Pre-Surgery Lumbar: 66 degrees

                Post-Surgery Thorasic: 34 degrees
                Post-Surgery Lumbar: 22 degrees

                Comment


                • #9
                  Louisse-- thanks for the update. It sounds like you are coming along fine. Remember, this is a long recovery. Some people bounce back sooner, but a lot of us take longer. Your body will recover at its own speed, no matter what your mind is trying to tell it (like "hurry, hurry, hurry!") It teaches us patience! It's easy to get discouraged when it takes so long to notice much progress. Just keep looking back so you realize how far you've come... that really helped me when I thought it was slow-going.

                  That's pretty cool that you had that outing to the store. So it really sounds like you are doing quite well! Glad to hear about all your support as well.

                  Take good care of yourself. And you'll see-- you are making progress-- it just is sometimes slow enough that you don't notice it very much, except with more time. Keep us posted on how things are going. Hugs, Susie
                  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


                  • #10
                    thanks for all your replies and best wishes - it really means alot to me that you have taken the time to reply.

                    discombobulated - yes that first hair wash felt soooo good!

                    augemac - crikey, no I didn't drive myself - surgeon said not allowed until approx 4 months. just sat upright in the front seat - it did feel very strange and not as painful as I expected just weird

                    jennifer - yes I feel straighter (have gained about an inch in height) but def remember a very strange feeling like I was leaning to the right when I first came round from the op (just didn't feel like I was lying straight in the bed)

                    Ginger - glad you liked the tattoo!

                    Susie - thanks for your support , yeah I just keep looking back then it makes me strong enough to look forward (if you know what i mean)

                    best wishes to you all
                    Louisse
                    x
                    Diagnosed aged 17 thoracic curve of 40°/48? given brace worn for short time but was then told that I had stopped growing and it wasn’t likely to get worse. Follow ups ‘got lost in the system’ and I chose to ignore until age approx 33, after two children. Now nearly 42yrs curve was progressing (last xrays 67 degrees) and increasing 'backache' so surgery (posterior T3 - L1) went ahead beginning of September 2008 in UK - thoracic curve now approx 20° and I look a lot straighter!

                    Comment


                    • #11
                      wish you a speedy recovery!

                      im actully getting my surgery, starting 2morrow. im at the hospital at 6am and under the knife at 8am. should be tons of funn.

                      god bless

                      Comment


                      • #12
                        Louisse,

                        I had to laugh because your right it would too soon but these days I am so surprised what everyone can do!! With my last surgery I had to wait 6 months! So good that you didn't and glad you are doing good! Take care and rest.

                        Arizo,
                        Praying for your surgery! It will be over quickly!

                        Take care ya all!
                        Adrienne
                        1991 T4 - T12 Fusion
                        1993 Rod Removal
                        1999 T4-L4 Fusion (7 rib thoracoplasty)
                        2002 Rod Removal 58;49 degrees
                        Denver, CO; Dr. John Odom
                        Rocky Mtn. Spine Center

                        Comment


                        • #13
                          Hi everyone
                          just thought I would add my recent xrays for you all to see to this thread I started a while back as I know you all like the 'before and after' shots!
                          I'm now 3 months post op and starting to feel loads better.
                          All the best to those of you facing surgery in the next few weeks.
                          Louisse
                          x
                          Diagnosed aged 17 thoracic curve of 40°/48? given brace worn for short time but was then told that I had stopped growing and it wasn’t likely to get worse. Follow ups ‘got lost in the system’ and I chose to ignore until age approx 33, after two children. Now nearly 42yrs curve was progressing (last xrays 67 degrees) and increasing 'backache' so surgery (posterior T3 - L1) went ahead beginning of September 2008 in UK - thoracic curve now approx 20° and I look a lot straighter!

                          Comment


                          • #14
                            Amazing!

                            Louisse-- what a difference! It was great to go back and see your before x-ray and compare it. Your surgeon was able to really get a good correction. And the before and after pics of your back are impressive too. By now I bet your scar is looking pretty tame too. Thanks for sharing!!!
                            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


                            • #15
                              congrats on your speedy recovery! You are looking great!! Arnt those screws wicked llooking in the xrays? You look nice n straight....very cool!!! Take care & I wish you continued success w.your recovery! Keep us posted!
                              Lynn -30.... something
                              DxD @ 8 yrs old: 10* curve-no brace-no nothin'!
                              At age 26: Thorasic 48*/Lumbar 50*
                              At age 34: Thorasic 58*/Lumbar 60*
                              Posterior T5-L4 Fusion Jan 14th, 2009 w/Dr Tribus
                              UW Madison, WI Hospital
                              **AFTER: less than 10* Thorasic/15* Lumbar**

                              Comment

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