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Problems After Spinal Surgery - Crankshaft

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  • #46
    Update on Elysia June 09

    Hi everyone,

    Thought I had better quickly post here cause my initial post might have put the frights into a few parents out there who are still contemplating surgery.

    Saw our Surgeon in June and Elysia's lumbar curve has stabilised. She does have the return of her rib hump and would seem that with a very flexible spine and a full on growth spurt - that her spine 'sprung' back way more than normally expected.

    She is risser 3 - so it's all good news - and our surgeon doesn't think she will have problems with back pain in the future. She is very lopsided still - in both hips, chest area and back hump is looking awful - but..... he said any further surgery would be for cosmetic reasons only. Well folks - that aint gunna happen!!!!! He would be extending her fusion down to L3 and this would reduce movement in her lumbar region.

    I personally think a little lopsidedness - in exchange for a more flexible back - is the way to go. Unless things start moving again over the next 5 months - he aint touching the kid.

    She's fused now - and that's that - life is full of disappointments - such a shame that the rib hump is back after the Thoracoplasty - but I gotta be happy - she's healthy and relatively pain free! Well not for long - she gets her wisdom teeth out and braces in 2 weeks - so more hooks and wires for the kid and more $$$ flying out of mums and dads pocket!!! Interestingly - surgeon said most kids with scoliosis - seem to need braces as well????

    Hope all my old friends are doing well and their wonderful offspring!!!!

    Keep smiling
    Del

    xxxx
    Elysia 16 in Feb 2010
    Sydney - Australia
    Feb 2008 Fused T5-L1 and 5 ribs removed.
    Dec 2009 - Crankshafting
    Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
    L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

    Comment


    • #47
      Del,

      I am very relieved to hear Elysia is stable! And so glad to hear she is almost done growing.

      It's a long road. All we can do is stay as strong as our kids obviously are.

      Best regards,
      sharon
      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


      • #48
        Del,

        What a relief it must be to know that Elysia is stable. What does she say about the appearance of her back?

        Wisdom teeth---ugh! I had mine at when I was 14 and both of my daughters (one with Scoli and one without) needed their wisdom teeth out at age 14 as well. Jamie (the daughter with Scoli) said that getting 8 teeth out, yeah her mouth is so small they had to remove 4 wisdom teeth plus 4 others before putting her braces on, was nothing compared to having a spinal fusion! Her dentist wanted her in braces long before she ever got them, but at the time she was trying to wear a Milwaukee brace and she said there was no way she was going to wear a brace for Scoli and braces on her teeth!

        Mary Lou
        Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

        Comment


        • #49
          Hey there everyone,
          Well that's kind of sad reading through my old posts! Relatively pain free I said! Well things are taking a turn for their worse I fear - pain is getting a bit out of control these days.

          Elysia was a mess at school yesterday, the pain became unbearable! The days like this are becoming closer together, lower lumbar pain and constant rib pain and difficulty breathing. It's so frustrating as there is nothing anyone can do except for me to let the surgeon have his way! There is no point in taking her to a GP - did that recently and got sent to some quack specialist who wanted her to do these weird excercises 5 times a day which involved bending back and looking up at the roof!!! A muscular skeleton professor - You guys would have been laughing seeing what he thought was going to help her. Although he did pin point where her pain was..... give the man a medal, I could poke her in the back and say tell me where it hurts!

          Sigh, looking at her standing now, she's almost back to pre-surgery shape! Rib hump is back and staying... as he's already said he can do nothing about her rotation now as it's too dangerous on a fused spine.

          I'm so dam confused as he said she had done growing, if that's the case why is her dam back giving her so much trouble??? Has the tilted L2 slipped it's disc or something???

          Anybody know how much Ibuprofen or Panadol is a safe level to take and for how long - the boxes say if your pain persists after 48 hours see your DR - pfffttttt - it's going to be longer than that! I'm now telling Elysia she has to dose up on some pain killers from now on so she can stop being so grumpy with her pain all the time, she's very anti drugs for some reason, but I think not taking something makes things worse by you stressing and tightening your muscles up more.

          We see the surgeon on 2nd August but I'm going to get her x-rays done much sooner than that so I can see for myself what's gone on since December last year.

          Cheers
          Del
          Elysia 16 in Feb 2010
          Sydney - Australia
          Feb 2008 Fused T5-L1 and 5 ribs removed.
          Dec 2009 - Crankshafting
          Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
          L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

          Comment


          • #50
            Del-- I am just so sorry to hear your news. I was hoping no news was ok news, but apparently not. I believe the adult maximum dose is 4 grams per day, but you're not supposed to take it for very long. It can really do severe damage to your liver. You should check out other pain relievers. There are some that are not narcotic and that aren't Nsaids...

            Hoping and praying that you'll be able to find a good solution for poor Elysia. That just is not the way it should be for her. She went through enough just with the surgery itself. Cyber hugs to you all.
            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


            • #51
              Saddened to hear of Elysia's outcome. Was your surgeon well-recommended, does he do a lot of scoli surgery on teens? I am wondering if a second opinion might be warranted.

              I can highly recommend a surgeon, but he's in Brisbane.
              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


              • #52
                Del,

                Thanks for writing. I am extremely saddened to hear of this news.

                I like your approach. Something else to consider at this point is to get a consult with a revision specialist. Long term meds don't seem like the answer. Hopefully there is a surgical solution to this. It seems beyond PT but I don't know that.

                If her pain is coming from the L1-L2 disc then why wouldn't that go away if it was fused? If it is coming from the lumbar then why can't that be fused?

                You might also start calling/emailing specialists in your country and other countries questioning the ability to revise a rotated fused spine. I'm just saying I think folks with seemingly more compex cases have been helped but I don't really know that.

                Good luck, Del. This is a hard road for you and your family. Life is very unfair.
                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


                • #53
                  Just to keep those interested in the know....

                  Had our appointment yesterday. My head is going to explode today!!
                  Elysia will be having the 2nd surgery 30th November. We're in Australia so that is 2 weeks after her final exams for the year.

                  Our surgeon will be taking out the old rods, fusing L2 and L3 and inserting longer rods, he will also be performing ANOTHER thorocaplasty and trying to derotate her again! Funny, I thought last appointment he said he couldn't do that on a fused spine??

                  He can't guarantee that this will eradicate the pain that she's constantly in... he just said, if she's straight there shouldn't be the strain on her back muscles that there is now. This time I will DEFINATELY be following up on some post op Physio of some description - last time I was just too scared to do anything other than what we were told to do.

                  He's even said she can play sport again by March next year... Yikes, that's scary, she plays a sport similar to your basketball, lots of contact in some games.

                  She broke down in tears, don't know if it was regarding the surgery, the talk of another MRI or the thought of KNOWING this time what she's up for.

                  By the way Sharon, after all those talks years ago about Epidurals..... yep, she's having another one for this surgery! It's just so she's as pain free for the first couple of days, she'll basically sleep for 48 hours!
                  Also... there is no such thing as a revision surgeon here in Australia - we only have a dozen or so scoliosis surgeons in the whole country!

                  So not much more to add to the story other than he has now confirmed she has definately crankshafted through the thoracic. There was some debate whether she had or not! I guess the only lucky thing is she has done growing so the crankshafting can go no further. I've also been told by another medico that pedicle screws won't stop crankshafting and neither can Anterior and Postieror surgeries give a 100% guarantee either.

                  All I want to do now is scream FIRETRUCK - omitting the 2nd,3rd,4th and 5th letter!!!

                  I'll post later if anything more to add to the saga!!!

                  Cheers to all
                  Del
                  Elysia 16 in Feb 2010
                  Sydney - Australia
                  Feb 2008 Fused T5-L1 and 5 ribs removed.
                  Dec 2009 - Crankshafting
                  Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
                  L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

                  Comment


                  • #54
                    Hi Del, Yes I know there are no revision surgeons in Australia, if only!!!!
                    I would not worry about her being fused down lower and not having much flexibility. As you can see by my signature I am fused town to L3 and have quite a lot of movement. Sorry but need to say this, but it may not happen to you. The discs that were not fused have done all the work for the back so to say, and that is why I am in a bit of trouble now with pain. But also in saying that, my operation was done years and years ago and things are just so much better now. I can see her playing sport again, truly, I had no hassels at all even back then. No problems with pregnancy, everything was normal I led a normal life and did everything I wanted, just in case you were worrying.
                    All the very, very best to you and your daughter. You will be so glad in the end that the decision was made.

                    Regards
                    Lorraine.
                    Operated on in 1966, harrington rods inserted from T4 to L3, here in Australia. Fusion of the said vertebrae as well. Problems for the last 14 years with pain.
                    Something I feel deeply,"Life is like money,you can spend it anyway you wish, but can only spend it once.

                    Comment


                    • #55
                      Del,

                      Thanks for the update.

                      I think you and your daughter need answers and hopefully you are getting them.

                      Life is ridiculously unfair.

                      Best regards,
                      sharon
                      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


                      • #56
                        Sorry to hear this, Del. I hope and pray this second surgery does the trick.

                        However, I love the "firetruck" comment and will have to use that soon...!!! Yell away, if it will help!!
                        Chris
                        A/P fusion on June 19, 2007 at age 52; T10-L5
                        Pre-op thoracolumbar curve: 70 degrees
                        Post-op curve: 12 degrees
                        Dr. Boachie-adjei, HSS, New York

                        Comment


                        • #57
                          Oops - She did it again!

                          Hi one and all,
                          I've come back to where it all began - back to where the people with PHD's in Scoliosis reside!!! Well, it does feel like it sometimes doesn't it?

                          Elysia was scheduled to have her 2nd Surgery yesterday at 1.00pm!
                          She had developed a UTI overnight with burning and blood and we DID inform the nursing staff on our arrival at the hospital at 10.00am.

                          They took samples, sent them off to pathology and told me THEY were going to inform her surgeon. Well...... Elysia is all scrubbed up, robed up, bawling her eyes out, worse than the first time around as she knows what's next... when in walks the Anethetist! I tell him about her UTI! He has been told nothing.... he phones the surgeon who's by her side in 5 minutes.... He cancels the surgery!!!
                          Can't take the risk! OMG!!!!!!!!!!!!!!!!!!!!!!!! After all the emotional roller coaster, just as your about to be wheeled into theatre and then this????????????

                          I had a feeling they would't proceed, but thought maybe they have some new antibiotics they would put her on after the surgery to counteract any nasties! But no!

                          Now they are trying to do a "unplanned" surgery for just her on a Saturday, the 11th December! Trying to get all team members availability to proceed! If not, who knows when!

                          So.... firstly.... shouldn't it be the norm to do a urine test BEFORE surgery if it's so important not to have nasties in your system.... if Elysia hadn't spoke up and told me about it.. everything would have just gone as planned!

                          Secondly.... How exactly does nasties in your urinary track, which are obviously in your blood stream affect the spine? So a bug is a bug regardless of where it originated???

                          Sigh... all fun in the sun here for us, poor Elysia!

                          For anyone interested, I've attached a pic, not a good one, of before her surgery 2008, 6 months after her surgery, perfectly straight, and six months after that, all pear shaped!

                          Please pray for her that God will somehow lead us to the right path for this child and for this surgery!

                          Del
                          xx
                          Elysia 16 in Feb 2010
                          Sydney - Australia
                          Feb 2008 Fused T5-L1 and 5 ribs removed.
                          Dec 2009 - Crankshafting
                          Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
                          L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

                          Comment


                          • #58
                            Del - good to hear from you.

                            Poor Elysia. What a roller coaster!

                            That's an amazing change from the surgical correction immediately post op to now. I think that's called "adding on" and it seems to be at the top and the bottom. Not sure though.

                            Is she done growing? I assume her pedicles are still too small for screws.

                            I'm surprised they canceled. I didn't realize UTIs involved the blood. While antibiotics (molecules) can travel from blood to the bladder, I don't think bacteria (cells) can travel from the bladder to the blood but I don't know that.

                            Stay strong. They will fix this.

                            Best regards,
                            Sharon
                            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


                            • #59
                              Hi Del,
                              Guess I missed some of your posts along the way and didn't realize till now what your daughter has been going through painwise and another upcoming surgery!!! I am so sorry for her and your family.
                              You may remember Patrick, my son, has crankshafting too but fortunately no pain at the moment. He has a major rib hump again which was pretty much gone after surgery and he just looks so deformed to me(I don't say anything to him about this and he seems okay as far as self estemm is concerned). He has had his last appointment with the childrens hospital so in the future he will go to an adult surgeon for any care he may need. I fully expect he will need futher surgery someday.
                              I do hope that your daughter becomes painfree with this second surgery. I am also curious as to how they derotate once she has been fused or will they break the fusion although that soundl unlikely. My thoughts are with you and please let us know. Hope they can reschedule you soon.

                              Ramona
                              mom of Patrick, age 15 at time of surgery
                              diagnosed July 2006 curves T58 L 38

                              Nov. 2006 curves T72 L38
                              also lordoscoliosis

                              feb.2007 curves T79 L43

                              Surgery May 16 2007
                              fused T4 to L1

                              Comment


                              • #60
                                Hi Del,

                                I haven't been on this forum for a long while and I just read about what's been happening with Elysia. Was she able to get the surgery last weekend? I hope so because I can only imagine how excruciating the waiting must be in addition to dealing with all the other stresses related to this, especially poor Elysia's pain!

                                Please let us know what's going on when you get the chance.

                                My son, Alexander, has no pain now but I'm sure he will have it one day because his posture, despite seeing a physical therapist after his surgery, as well as many other appointments and activities to correct it, has remained problematic. He still tends to lean on one side, unless he's thinking not to. He's only around 5'1/4" when he's standing straight and tall and when he's leaning, he can appear to be around 4'9 or 10".

                                Good luck with everything!!! I'm really hoping that Elysia has a very successful 2nd surgery and can be done with thinking about scoliosis for a very, very long time, if not forever!

                                Laurie
                                Laurie

                                Mother of Alexander & Zachary:
                                Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
                                Zach is 13 years old and very energetic.

                                Comment

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