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  • Feeling like I'm going to do it...

    Hey everyone!

    My follow up with my scoli surgeon is this Thursday, so any prayers sent my way would be appreciated!

    My husband and I have been talking it over for the last month, and he is really starting to see where I'm coming from. He does get very nervous any time I tell him ANY details about the actual surgery, but I think if the situation was reversed, I'd feel the same way. But he did say, if I decide to do it now he'd support me 100% and understand that I'm doing what I think is best for our future and for me.

    So, that was a big part of my decision making process, because if he wasn't for it, then there was no way I was going to do it! Now all that remains is this visit with my surgeon on Thursday to discuss the details of the surgery, ie. full fusion, one or two rods, etc.

    It's weird b/c in my mind it makes sense to do the surgery now, as my curves are getting worse, and they are already so progressed, but every time i think about going to the hospital and having to go through another recovery I just feel sick to my stomach!!!

    Anyway, just thought I'd share. This is quite a journey for me, 3 surgeries under my belt so far, in my 3 years of marriage. Thank God I have a great husband!!!

    oh, before I forget! How long did it take you guys from the time the doctor decided to go ahead with the surgery, to when you actually had it? What things did you have to do before (x rays, tests? ) Just wondering!

    Thanks!
    Rebecca
    Age: 28
    Dx w/ scoli @ age 12 S curves T-40* L-42*
    wore night bending brace as teenager
    Curves changed to 50's plus or minus
    herniated disc L2-3, Discectomy October 2007
    fusion L2-3 November 2008
    Revision L2-3 Fusion, Removal of hardware August 2009
    Curves measuring 52 T&L September 2010
    Fused T4-L4, all posterior December 27th 2010
    gained almost two inches in height

    Before and After Exterior
    Before and After X-rays
    My blog: http://herscoliosisjourney.blogspot.com/

  • #2
    Hi-If your curves are already in the 50's at 27, I would probably go ahead if that's what your doctor is recommending. I think I read somewhere that most docs recommend waiting 2 years post op before getting pregnant, so if that is a consideration you may want to discuss that with your surgeon. I wish I would have gotten my scoli fixed earlier; maybe10 years ago when it started getting bad.

    My first appointment with Bridwell was early June. At that appointment I decided to go ahead and schedule surgery. I wanted their first available so I scheduled for Aug 31. Most people probably don't decide that quickly but I had seen other doctors and after meeting with him I knew I was ready. My first tests were a bone density and pulmonary function. At my next visit they drew about 7 vials of blood and I had an EKG.

    Good luck with your decision!
    Age 56
    Wore a Milwaukee Brace for 3 years in hs
    Fused L4-S1 for high grade spondylolisthesis Jan '09 in Indy
    Thoracic 68
    Surgery Aug 31, 2010 T3 to L1
    Dr Bridwell St Louis
    http://www.scoliosis.org/forum/attac...1&d=1289881696

    Comment


    • #3
      After three surgeries in three years, I can understand some extra hesitancy on your part. The truth is, for MOST of us, it's a success and we're happy with the results. But for those few unhappy outcomes, it does make you think long and hard about going ahead. I'm glad your husband is on-side and will support you 100%. I think that's incredibly important.

      I saw my surgeon in the June and I phoned in August and made the surgery date for September 16. I then changed my mind (not ready mentally) and rebooked it for March 3. It was then a very long wait (too long) but I got as fit as I could in that time. I was very ready by the time my surgery date came around. I didn't see my surgeon again until after the surgery. No pre-op appt. No pre-op tests. I still wonder about that. Not even a blood test, no x-rays. It must have all been done after I was asleep. The x-ray on the table showed my curve had increased another 2 degrees from the previous June.

      From what I've read, most people have a pre-op appt and pre-op tests. I have no idea why that wasn't the case for me.
      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


      • #4
        Thank you ladies! I'll post again after my appointment!
        Rebecca
        Age: 28
        Dx w/ scoli @ age 12 S curves T-40* L-42*
        wore night bending brace as teenager
        Curves changed to 50's plus or minus
        herniated disc L2-3, Discectomy October 2007
        fusion L2-3 November 2008
        Revision L2-3 Fusion, Removal of hardware August 2009
        Curves measuring 52 T&L September 2010
        Fused T4-L4, all posterior December 27th 2010
        gained almost two inches in height

        Before and After Exterior
        Before and After X-rays
        My blog: http://herscoliosisjourney.blogspot.com/

        Comment


        • #5
          Hi - I had been seeing my spine specialist for over 10 years, Dr. Herkowitz. When I went in January 2010 he suggested I start considering the surgery option. I went over everything he told me with my family doctor and a local orthopaedic doctor. Both agreed it made sense. I went back to see Dr. H. in February 2010 and scheduled surgery for April 2010. It was about a 2 month wait, which was just long enough. Enough to plan but not to long. Once I knew i was doing it I seem to be obssessed. I read everything I could, I was on this forum alot, prepping at work and at home, just sort of consumed me.
          I went for a full physical including EKG, a CT scan and bending xrays. Also lots of blood work and I also donated 1 unit of blood for them to use my own in surgery. (I ended up needing 5 units though) I had quite a checklist of things to get done in prepping. Let me know if you would like me to share it.
          You can read a little more about my surgery experience in the hospital on my blog, archived in April 2010. www.scoliosisthejourney.com
          Good luck to you in your decision.
          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

          Comment


          • #6
            I would be interested in seeing your checklist. Please post or send me a PM.

            What, if any, are strengthening exercises you might have done? Did they help?

            Thanks.

            Comment


            • #7
              Shari's checklist

              Shari,
              I would also greatly appreciate having a copy of your checklist. Could you email it to me at pottoff@htc.net or send it in a PM?
              Thank you!
              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


              • #8
                hi peach
                you mean fusion to pelvis, i assume...?
                that is what is holding me back....needing fusion to pelvis...though i know there are success stories on forum of those who were fused that low....

                best of luck
                jess

                Comment


                • #9
                  Checklist

                  I will attach my rambling checklists on this reply, as an attachment. We'll see if works. Please realize I am kind of an anal and some even say controlling person.

                  Take it for what it's worth. Lots of silly details. But it made me feel in control of what I was doing and I did not want to burden my husband with so much already knowing what a dear he was being and what he was also going to be experiencing with supporting me.

                  I'm sure there are things others would have added or deleted, done differently, but this could be a start.

                  Feel free to write with any questions.

                  It said my file was too big, so I have attached one document. And had to cut and paste the others onto this post. This now makes for a very long post, sorry! Don't know why the attachements won't work. Be sure to look at the one that is attached as that has alot of the medical prep.

                  House prep:Lay shoes out in closet where I can just slip feet into them, not dig for them. Have flip flops, slippers, all slip on shoes for first month.
                  Kitchen: put pans, plates, cans of soup, on counter where I can reach on my own.
                  Create contact list for my husband to contact those that need calls day of surgery. We also started a blog that he posted on all through day of surgery and following. This saved him a lot of phone calls.
                  Have hair (cut and color), nails and toes done 1-2 days prior to surgery. You want to feel as good as you can, this helped me.
                  Raised toilet seats installed
                  Shower head enhanced to have a pull down wand
                  Chair for shower
                  Grabber
                  If getting hospital bed, twin size sheets, things to make bed softer, pillow top pads, etc.

                  Packing list for hospital:Pajamas and robe
                  Slip on slippers
                  Kindle reader (never used, mind is no shape to read. Leave books behind)
                  Underwear
                  Camisole so you don’t have to snap a bra around incision
                  Deodorant, Feminine pads
                  Reading glasses
                  No rinse shampoo (never used, not worried about hair 1st four days and then I could shower on day 5)
                  Body lotion
                  Hair brush and spray
                  Loose clothes to wear home with slip on shoes
                  Phone and charger
                  Pillows for car ride home
                  My trusty overall notebook I used in preparing for surgery. Had all the phone numbers for home health care, hospital bed, etc.
                  Buy and take soap to use pre-surgery (we stayed in hotel night before surgery)
                  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

                  Comment


                  • #10
                    Shari---Thanks for the checklist!!! Very thorough! One thing i've always done before previous surgeries is take all my clothes out of lower drawers, and line them all up either in my closet on a high shelf where I don't have to reach up or down to get them, and to make sure everything in the fridge is also at the right height. These small things like you listed are VERY helpful.
                    -funny/sad thing is, I already have a walker and raised toilet seat from my previous surgeries, so that's good to go. I would LOVE to change my shower head this time around though, mine's fixated. I could manage, but I didn't love it. I can see how much easier that'd make it. And bringing a bathrobe is a MUST. I loved being able to actually cover up when they make you take your first walk down the hallway.

                    jrnyc---I currently only have a one level fusion at the L2-3, the apex of my lumbar curve. I am considering having the full scoli surgery. Not sure how far up or down we'll fuse, my surgeon said he may be able to leave my bottom two vertebre free, but that's something we'll discuss this thursday at my appointment. I am excited though because he said he thinks he can give me a complete correction, as I'm still young and very flexible Even if i got down to a 20 degree curve though I'd be VERY happy. I've never been below 40 degree curves since I was 12 or 13 so that'd be a big change.
                    Rebecca
                    Age: 28
                    Dx w/ scoli @ age 12 S curves T-40* L-42*
                    wore night bending brace as teenager
                    Curves changed to 50's plus or minus
                    herniated disc L2-3, Discectomy October 2007
                    fusion L2-3 November 2008
                    Revision L2-3 Fusion, Removal of hardware August 2009
                    Curves measuring 52 T&L September 2010
                    Fused T4-L4, all posterior December 27th 2010
                    gained almost two inches in height

                    Before and After Exterior
                    Before and After X-rays
                    My blog: http://herscoliosisjourney.blogspot.com/

                    Comment


                    • #11
                      Thank you Shari and Peachrush7. Was your robe a wrap, zip, or snap? Did you actually wear your own pajamas? I would think it would be more difficult than the hospital gowns. How long were you in the hospital?

                      Do you have any suggestions for vitamins or supplements? Exercise to prepare before surgery?

                      I have been doing my yoga breathing (ujayi) and Svaroopa yoga poses.

                      Thanks again.

                      Comment


                      • #12
                        backissues, I have a wrap robe, but I think any of those would work =)
                        I didn't wear my own pj's as like you said, it's easier to wear the hospital gown for easy access to the wound. but i did bring comfy comfy clothes to wear home, a camisole so i didn't have to wear a bra, and sweat pants and flip flops. I also brought my own slippers with a rubber bottom for traction for the hallway and the ride home. I liked having those, because the socks they give you are not quite as 'stable.'

                        i take the recommended amount of calcium supplements for a woman every day, and a daily women's vitamin as well.

                        blessings!
                        Rebecca
                        Age: 28
                        Dx w/ scoli @ age 12 S curves T-40* L-42*
                        wore night bending brace as teenager
                        Curves changed to 50's plus or minus
                        herniated disc L2-3, Discectomy October 2007
                        fusion L2-3 November 2008
                        Revision L2-3 Fusion, Removal of hardware August 2009
                        Curves measuring 52 T&L September 2010
                        Fused T4-L4, all posterior December 27th 2010
                        gained almost two inches in height

                        Before and After Exterior
                        Before and After X-rays
                        My blog: http://herscoliosisjourney.blogspot.com/

                        Comment


                        • #13
                          Peach

                          Looks like you are ready. I scheduled 3 months out.

                          My surgeon wanted me to go to the dentist as he didn’t want any "teeth" problems in my recovery. Major bacteria cultures wouldn’t be a great thing.

                          Keep us posted on the levels that he decides. If you decide to leave the lowest 2 lumbar vertebrae alone, ask him how long he feels they will last under your construct and your chances for revision.
                          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


                          • #14
                            Hey everyone...thanks again for your support. I had my consult yesterday and it really didn't change my mind/feelings at all, but it did actually FREAK my husband out.

                            I didn't hear anything new, and hearing all the gruesome details didn't make me any more nervous than I already was. He reiterated that at some point, my curves being what they are now at my age, I'm probably going to need the surgery. I may not, and I don't 'need' it now, so he's not suggesting I do it, but he's also not suggesting I NOT do it! He said he'd do the full two rod fusion to correct my double major curve, but most likely leave the bottom two vertebre free, as they are still in good condition, and thinks I'll get another 20-30 years out of them.

                            My husband took all this though, as since the surgeon is not saying do it now, that the surgeon is saying DON'T do it now. But I honestly think this is coming from a HUGE fear of such a major surgery, and he wasn't listening when the dr. talked about patient after patient he treats in their 50's or 60's because of their massive curve progression or horrible pain.
                            And that's if I make it to my 50's! He did say he will still support me whatever I decide, but I can tell he'd rather me just wait until I HAVE to have it. It's so hard b/c he doesn't really seem to get where I'm coming from completely. I feel like he is holding on to this hope that I'll NEVER need it, so why risk it. I don't have that hope. I have a VERY strong feeling that I'll need it sooner rather than later. And even though I'm only progressing at about 1 degree a year, that only gives me 6-8 more years before I HAVE to have it. I don't think it's going to stop. But I have nothing to prove that to him you know?

                            So, I am giving myself a month or so to make my decision. My dr. said it'd be only a month out once I make the surgery date, and so I'm not quite there yet. I need time to wrap my head around giving up my mobility, and face my fears of exchanging the limitation/pain that I do know, for a different kind of limitation/pain that I don't know.

                            It's SOOO hard! I do feel like I'll make it soon, b/c I want to start trying to have a baby, but I can't do that until I decide for sure that I'm putting it off until I'm older/can't function.

                            Scoliosis is for the birds!
                            Rebecca
                            Age: 28
                            Dx w/ scoli @ age 12 S curves T-40* L-42*
                            wore night bending brace as teenager
                            Curves changed to 50's plus or minus
                            herniated disc L2-3, Discectomy October 2007
                            fusion L2-3 November 2008
                            Revision L2-3 Fusion, Removal of hardware August 2009
                            Curves measuring 52 T&L September 2010
                            Fused T4-L4, all posterior December 27th 2010
                            gained almost two inches in height

                            Before and After Exterior
                            Before and After X-rays
                            My blog: http://herscoliosisjourney.blogspot.com/

                            Comment


                            • #15
                              Originally posted by peachrush7 View Post
                              I need time to wrap my head around giving up my mobility, and face my fears of exchanging the limitation/pain that I do know, for a different kind of limitation/pain that I don't know.
                              well put. i feel the same way. it sounds like you are sure that this is the time to have the surgery, even if the future is uncertain. i think that is very brave. i think a lot about what it will be like with the fusion, and what it would be like if i waited or didn't have it at all. I'm just a little bit older than you (30). We will be living with the fusion for a long time, and may need more work down the road. Does anyone know of any longitudinal studies that have followed young adults who have had fusions using the techniques that are common today?

                              i think a lot about the idea of impermanence too, and how whether I have the fusion or not, I won't be permanently fixed. I wonder how much life I will get out of the rest of my spine, and how long it will be before I need another surgery. I don't think there are any hard answers, but I'm very interested in hearing the stories/results of those who had surgeries when they were young.

                              Cristi
                              30 year old female, 50-55deg lumbar curve
                              scheduled for T10-L3 fusion with Dr. P. Gupta Jan. 3rd
                              considering physical therapy to help slow/stop progression
                              Cristi
                              30 year old female, 50-55 deg lumbar curve
                              Diagnosed with 30deg lumbar curve at 18
                              Scheduled for T10-L3 fusion with Dr. P. Gupta Jan. 3rd
                              Considering physical therapy options to slow progression.

                              Comment

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