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  • Decisions, decisions

    Hi everybody
    i went to see another surgeon on thursday aug. 6th in nyc...i have only good things to say about the surgeons i am considering...so i will say that the doctor i saw for first time was dr. neuwirth...i liked him, tho i have felt for 2 years that i would go with dr lonner, who has been following my curves for 5 years! every surgeon i have seen has recommended the same surgery...basically A/P, with anterior L4-sacrum, & posterior T11-S1.... "w/bilateral pelvic fixation"....only thing different was dr neuwirth said was he would do front first, about 2 hours , he said, & then a few days later, do the back, about 8 hours, he said....dr lonner said he would do entire surgery in 1 day ( though i never asked if he would consider breaking it up into 2 days)...
    anyway, i am still debating...i am just afraid i would trade one set of pain for another...& all i really care about is getting rid of the pain...i am on very strong meds from pain management, & i dont want to live like that, knowing i will need to increase the dose the longer i am on the meds...i like both surgeons very much...but i am so scared of the permancy of the rods...& i am told i may need as many as 16 screws!!!! wow, it sounds like ALOT of hardware!!!!

    i would be so grateful for any info/advice....i know only i can make the decision...i am just interested in others' experience, especially those fused to the pelvis!! dr neuwirth admitted that fusing & anchoring that low makes any flexibility at all more difficult!! but he also said he has patients who are very active after surgery, & feels i would become so as well... i just cant wrap my brain around being able to do ANYTHING after being fused so low!
    i know i have written on forum before about my indecision, but the pain is getting worse & surgery seems more of a necessary reality to me now....

    thanks to anyone who can take the time to respond...
    jess

  • #2
    Hi Jess. I can only speak for myself and say that being fused to the pelvis sounds worse than it is. I know my body is more rigid than it was, and I can't trim my own toenails any more but I can do almost anything else. My posture is good, I'm taller and I have no pain. For me there's no contest as to whether I would do it again.

    There's no doubt you lose some flexibility but you find new ways to do things. When I bend for instance, to pick up something from the floor, I bend from my knees and at the same time from my hips.

    Pre-op there would be some rounding of my back in the middle, when bending. Well that's not possible now. It's like expecting your elbow to bend outwards, it just doesn't go.

    I know I was concerned about my flexibility pre-op but I need not have worried. I would have spent that time worrying about how I could have avoided being constipated for 9 days post op, instead!

    Good luck!
    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


    • #3
      I'm not sure how old you are Jess, but I guess the flexibility is more of an issue the younger you are. At my age, I am not planning on climbing trees or skiing. I do plan on going back to kayaking. Mastering getting in and out of the kayak will be the hard part. Strengthening core muscles will be necessary. But again, I feel it will be a matter of learning new ways, not giving it up.
      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
        It would be good jrnyc if you gave more info, like age and curve degree, any progression. But I say get the surgery if you are in pain that is not responding to medication or exercise. I wish you well in whatever decision you make, either decision is kinda tough
        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


        • #5
          Hi Jenn
          thanks so much for the reply...didnt think anyone would be reading this til later on...cant sleep worrying about my decision....
          i turned 61 this month....retired 2.6 years ago due to pain..took a penalty for retiring early...

          am not worried about sports or those kinds of activities...never did them at all....used to work out at the gym before the pain got so bad, but none of that is a concern...just doing ordinary everyday kinds of things worries me...for instance, i put fresh sheets on the bed today...wondered if i could do that after surgery...not that it's enjoyable.. (hah!), just routine....or walking my little dog, who pulls me around the neighborhood, even as small as he is! everyday things, things i take for granted now, but i see in a new light when i think about having the surgery (gives me a new appreciation of "ordinary"!)

          i really am grateful for your input...you can view things "before & after"...which i cant do...
          i wonder...are you free of pain now? is there no pain once your bones fuse? is that not painful in itself? i have read so many posts here on forum, yet there is so much i dont understand...

          thanks again for sharing your experience...& best of luck..

          jess

          Comment


          • #6
            Hi jimbo
            upper curve to be ignored (40 degrees) as it is taken care of w/botox injections...lumbar is 61, & is most painful....diagnosed at 31, it didnt bother me til 5 years ago, when i herniated discs at work, & then all heck broke loose...it has progressed rapidly since then...& when i retired 2 & a half years ago, i thought things would calm down, but instead, the pain has gotten much worse just in the last year..that really shocked me....dr neuwith said i have alot of arthritis in lower back, & that is making it worse...of course, the degenerative disc disease isnt helping! spinal stenosis too....all in all..a mess!!

            thanks for the reply...
            hope your back is doing OK?? you didnt say...?

            jess

            Comment


            • #7
              Jess,

              I'm 16 months out from the first back surgery. Most of my feeling has returned to my lower back. And the third surgery (revision in Mar 09) is coming along nicely. My nerves are "screaming," which means I'm healing. They definitely have my attention. But it's not painful. Just an awareness of sensations returning.

              I don't feel limited at all. As others have said, you adapt without even realizing what or how you did. I'm getting better at picking up things off the floor now. I don't "miss my mark" as much as I used to. My balance is better than ever, thanks to using the wobble board and Bosu ball every day. I have continued doing all of the exercises taught me while in PT. I want to keep the strength I developed in PT.

              I have stripped and replaced the sheets on our bed. I probably tried it at 6-8 months post-op. I think it just takes longer than it used to. My husband's weekly chore has always been to put fresh sheets on our bed, so it's not been an issue. I can do it, I just let him do it!

              The only pain I have now is healing pain. I do get muscle spasms, for which I have medication. If I don't take it in a timely manner it can become painful. I usually end up with severe spasms if I do too much. So my body "talks" to me. And if I don't listen, then I suffer the consequences. The doctor told me weeding was too strenuous. And he's right! I sure spasm lots after spending the morning in the yard. Notice I said morning. I probably could weed 15-20 minutes, not 2-3 hours. So I am still learning to pace myself. After all, I am only 4 months out from my third (and hopefully, last) surgery.

              Oh, before I forget, I walked out of the surgeon's office on my first visit, saying, "Surgery is not an option." When I told my husband he suggested another appointment, reminding me of the constant pain I was in and the "catch" in my back that would stop me in my tracks. I went back to Dr Floyd six weeks later and we talked surgery.

              I have no regrets, healing pain only, and hopes to travel lots on the Harley, maybe next year!

              Hope this helps. If you want to talk, PM me and I will give you my home phone!

              Lesley
              Les, Biker Babe, age 56 (at time of first surgery)
              Fused T2 to S2, posterior only, 8 Apr 08
              T3 fracture repair and revision, Mar 09
              Broke left lower rod and pelvic screws removal, Dec 09
              Scheduled to remove all hardware, replaced everything instead due to non-fusion, Nov 10
              Remove top 2" of rods and screws, Feb 14
              Pre surgery degrees: L40, T45
              Post surgery degrees: L8, T10

              Happy, joyous and pain-free!
              Surgeon: C Timothy Floyd, MD, Boise Orthopedic Clinic

              Comment


              • #8
                I can't comment on the decision to have surgery in your case but I was just curious about your comment about 16 screws seeming like a lot.

                As I understand it, the more screws the better. Less chance one will give if you have more I think. Also, the pedicle screws are the reason 95% of kids at least don't need any physical restrictions whatsoever after fusion to avoid pseudoarthrosis. Before that, even with casting/bracing, pseudoarthrosis was a problem as I understand it.

                Perhaps it's fair to say the screws were a very great leap forward in this surgery.

                Thus the screws are the "good guys."
                Sharon, mother of identical twin girls with scoliosis

                No island of sanity.

                Question: What do you call alternative medicine that works?
                Answer: Medicine


                "We are all African."

                Comment


                • #9
                  Hi Jess

                  I ended up with 33 screws. My x-ray is in my first thread. They anchored with 2 very long screws that were driven into my pelvis right up to my hip joints. It looks like a lot but I don't feel any of it. The old deep throbbing pains are completely gone.

                  I can bend over and almost touch the floor. My finger tips come to approx 2 inches from the floor.


                  It looks as if you will need the anterior operation first. They do this to achieve a better fusion. They staged me 2 days apart and I was on a respirator the whole time. I wont lie, it felt like I was hit by a freight train. The first 4 weeks are hell, and it took me 12 months to get back to 100% Now at 18 months I'm way better than I was before my surgeries.

                  PM me with your phone # as I can explain a whole lot more on the phone. I also recovered alone.

                  Yes it is your decision only. Usually this decision is driven by pain. I waited 34 years to make my decision, waiting for technology to improve. I'm glad I waited because its serious surgery.
                  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


                  • #10
                    Jess,

                    It's a very hard decision no matter what. Of course I'm partial to Dr. N, , but at least all 4 doctors you saw agree on the same approach. It would be much harder to decide if they all had different opinions. As far as picking the one for you, which Dr. are you the most comfortable with...which one in your GUT do you feel is the right one?

                    I can't comment on being fused to the pelvis, but I am fused T3 to L3. I can do just about anything I want to do, although like you and Jen I don't intend to climb trees or do all the daring things that Ed does!

                    Don't let the number of screws scare you. I don't feel any of mine, and looking at my current Xrays used to make me cringe. My husband jokes and calls me 'Franken-Mommy'. Like someone above said, the more screws you have, the more stable the hardware will be.

                    Good luck with your decision.
                    __________________________________________
                    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


                    • #11
                      Hi Jess...

                      One thing that might help you decide is asking each of the surgeons about the iliac bolts. I think that research shows that about 25% of patients have pain over these bolts. I'm not sure what others are doing about it, but Dr. Berven at UCSF has altered two things. First, he anchors most people on one side only. Secondly, he burrs off the head of the bolt. It seems to have fixed the problem, as none of his patients have complained about this issue.

                      Good luck with your decision.

                      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


                      • #12
                        To answer your question, I have no pain at all now. I had arthritis in my lower back pre-op and my surgeon said a lot of my pain was due to that. However, I don't have that pain any more. I couldn't stand in a queue pre-op, it hurt too much, but now I can stand for however long I need to.

                        No, I can't feel my fusion taking place. I am not even sure it is yet, I see my surgeon Wednesday next week and hope to find out. But given my complete lack of pain, I gather it's all happening as it should.

                        If I was to give one bit of advice to someone pre-op (if that is your decision) it is to get as fit as possible. Walking, as fast as you can is probably enough. I have Graves Disease and I was concerned about my heart and I wanted to be as heart-healthy as possible, but I think it's wise for any patient to get fit before surgery.

                        Apart from the physical aspects, being fit is good for dealing with your fears. You feel as though you can tackle anything. And believe me, as the world's biggest sook, (even bigger than Debbei ) I needed that!
                        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


                        • #13
                          Originally posted by titaniumed View Post
                          I ended up with 33 screws.
                          You have an odd number of screws Ti Ed???
                          Sharon, mother of identical twin girls with scoliosis

                          No island of sanity.

                          Question: What do you call alternative medicine that works?
                          Answer: Medicine


                          "We are all African."

                          Comment


                          • #14
                            I don't have any screws, and I thought that was normal. The first time I saw an xray with screws it freaked me out. It still does actually. lol
                            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


                            • #15
                              Thanks to everyone for their helpful replies...you are all so kind to share your experiences with me...

                              i will check out linda's information when/if i decide on the surgery...thanks, linda..it will be very good to know that stuff about bolts & things..there is so much i need to learn! it is amazing how much hardware the body can handle!! 36..??!! i thought 16 was alot, but that just shows how much i dont know!!

                              i wish all of you the best healing & most pain free lives!
                              and to those having surgery in august....please write when you can & let everyone know how you are doing....you are in the thoughts & prayers of so many of us!!

                              jess

                              Comment

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