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scoliosis-to have surgery or not? Help!

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    scoliosis-to have surgery or not? Help!

    Hi everyone, It's been a while since i've been on the forum but once again i am in need of advice.
    I posted about 2 years ago on the recommendation of vertebral body tethering as an option of controlling scoliosis as it was mentioned as something to consider in the future on a visit to shriners in Philadelphia. However since then we have returned Noirin's care more locally to stoke mandeville hospital in UK and pediatric orthopedic surgeon here in Ireland. All with differing opinions on what to do!

    Noirin had a T2 and T4 ant dislocation during a car accident resulting in a C8 sensory T1 motor complete SCI in May 08.(signal damage up to C6) She is now age 10 and a half with a 58 degree cobb angle which has been maintained from last year due to bracing. However she can be corrected quite well in brace with the exception of the rotation. THe scoliosis is hardly apparent when lying on her back but greatly exaggerated out of brace sitting unsupported (the position she is x-rayed in ). She has a great degree of flexibility.

    THe decision was made by her orthopedic surgeon to put in growing rods in next month or so as he hopes to stabilize to lower lumbar and not pelvis therefore maintaining ant/post pelvic tilt. He feels if we wait these too will become curved. He hopes to attach on to her existing rods at c6 to T6.
    I sent this letter off to Dr betz and x-rays and he recommends spinal fusion now from T2 to pelvis. Both consultants feeling she requires stability rather than flexibility and thankfully she is not into sport much but riding horses and swimming are her life.

    Here is my dilemma?.
    • I made the mistake of watching a youtube clip of magic rod insertion and the area of anchorage at T2/3 is her area of extensive damage and she has a hypersensitive scar (prob not an issue)
    • I wonder can her brittle bones ( had Vit D deficiency and a leg fracture in past) take pressure of pedicle screws?
    • What if the considerable torque applies causes further damage-she cannot afford any more dysfunction.


    In relation to the fusion, i really don't think she is strong enough to endure such a harrowing op. she is less than 4 stone and very thin.
    I also came across a case of a child with similar injury as Noirin under the care of shriners who lost vision due to the amount of blood loss during surgery and incidentally he had been peg fed for 6 months pre-op.

    And most importantly stoke mandeville spinal team including ortho do not recommend any surgery unless absolutely necessary and they do not deem it necessary for Noirin as curves remain flexible however they do note rotation.
    In relation to pulmonary function it has slightly reduce from last year but her last try on spirometer had better result- just as much to do with technique. She has had no RTI's recently and swims underwater holding breath and no issues.

    Am i just clasping at straws and if we continue with bracing, sleep systems and physio are we doing her an injustice? -further deformity and a life of nagging to sit up straight.

    I suppose what i need to know is have others had surgery and are they advocates of it or not?
    What are the liklihoods of further trauma and life of pain? She has none now.
    What are her limitations post surgery-will she still need to continue to wear brace when horse-riding?
    Will growing rods correct rotation or are VEPTR needed or fusion?
    Should it be a neurosurgeon rater than an orthopedic doctor?
    I can upload pics of curvature and get spirometry results if help.
    Thankyou all for your time and patience. X Sonia.

    #2
    I am going through the same type of process right now now. My daughter sustained a spinal cord injury (C5/C6) at the age of 12 and is now 17. The doctors are leaning toward a fushion for her to be performed spring 2015. The closer it gets and the more questions I ask the more I need to know. We don't plan to see the doctor until February but I would like to have a couple more doctors comment and I would like to meet with her surgeon well before then to ask even more questions.

    I feel she will loose some of the function she currently has (bending over and side to side) and, of course, I'm deeply concerned about her sustaining more complications.

    We just visited her pulmonologist and her lung capacity is great and she has been free of respiratory infections etc for two years.

    I just hate that I feel like I practically have to BE a doctor in order to make an informed decision in this. This week I am exploring what physical therapy could do to improve her slouching. She doesn't have much trunk control so maybe it is wishful thinking?

    Comment


      #3
      It might be helpful if you could speak to individuals who have had this surgery. I'm not SCI but at age 15 was offered the rod to protect against scoliosis - with almost no information, I opted against it due to post surgery cast for 3 to 6 months and helpless for ADL. I had been wearing back brace since Polio at age 7 (paralyzed from chest down), so decided to just continued with the brace, now I'm 72 still wear it, still have scoliosis. Much later in life I was in contact with one person, very similar situation, who decided for the surgery and had rod put in place. She said there was pain in some situations, especially if she had to be lifted, however she has led an active lifestyle in her wheelchair.
      I was never told to wear my brace overnight and often wonder if that would have helped during my growth years.
      Very best to you both with difficult decision.

      Comment


        #4
        I have Spina Bifida had my kyphosis surgery when I was 9 and the Scoliosis surgery done when I was 16, Scoliosis surgery was done in two stages. I'm 45 now, the only issue I had was with one rod breaking six months post op. surgeons clipped the broken end and no further issues since although x-rays have shown both rods are broken. The hardware is only there to support the fusion while it heals, so I would be more concerned about bone density in terms of fusion healing then anything else. I think it's imperative to find the best surgeon possible to do the procedure. Imperative that they be fellowship trained in spine surgery and the majority of their practice if not all of it should be spine surgery. This isn't something you want a general orthopedic surgeon even a general pediatric orthopedic surgeon monkeying around with. Find out the complication rates for the procedure being done and then find out the complication rate that the specific surgeon has for that procedure. I would look for a very conservative surgeon somebody who's going to error on the side of caution when doing the procedure, one who is concerned first and foremost with preserving function over getting a perfect correction. I admit some of these cautions come from having my surgeries done in "the dark ages" but my surgeon was always more concerned about preserving the amount of function I had then achieving a perfect correction.

        Comment


          #5
          If bracing "corrects" her spine, why not skip the surgery? When it comes to rods and hardware insertions, these are surgeries in which it is hard to unring that bell should she wish to have the foreign bodies removed later. Unless the scoliosis begins to impede breathing and/or compress internal organs to a damaging extent, less is always more. That's a helluva lot to put a child through for appearance sake.

          If Shriner's said this was an unnecessary op, listen. Heed that. The Shriner's medical staffers are entirely familiar with best medical practices for scoliosis secondary to SCI and other neuro disabilities. The surgeons where you live probably don't see as many children with her specific disabilities with the same frequency. Rod insertion is likely one of any number of orthopedic ops performed by a doc. If a doctor wants to insert those "growing rods," I'd be suspect. Understand surgery now is not a one time procedure. There will be additional, painful, life interrupting operations/consequences/changes and these do not always occur on schedule. Given time, wear and tear, additional problems due to SCI, hardware breaks. There can be hard to treat infections decades later due to hardware. Hardware can cause pain, increased AD, an increase in future skin wounds due to limitations hardware places upon positioning, the removal of other medical options to treat scoliosis in coming years should your daughter decide it's enough of an issue to address. Pay attention to those brittle bones.

          Let her have flexibility unless scoliosis without surgery robs her of serious quality of life. If the brace does what an op would do, use the brace.

          I'm writing these things as an adult woman in her 50s, born with cerebral palsy who later acquired an incomplete c 6/7 in my very early 30s. I had surgeries. And braces. And therapies. And pain. Now there is greater pain and I regret some of the medical decisions I made when I was decades younger. I'm paying.

          Unless your daughter ON HER OWN wants to treat the scoliosis because she has no quality of life without surgery, don't go there. Less medical intervention is more, especially in a child and soon to be teen. It's true in later life, but is CRUCIAL in a still developing child.

          I had (and still have) scoliosis. Mine was secondary to cerebral palsy. I'm thankful my docs and parents did not choose surgery for my curves and leaning physical self.

          I know you want the best for your daughter.

          I say skip the surgery unless her quality of life is seriously threatened. When she is older, she can choose such an intervention if she wants and it is medically necessary.

          Canuck is correct. It's function over form. Looking "straight" in her chair or on her back doesn't matter a fig if she loses any function from an op. I'd say the pain is not worth it if she only gains the appearance of being straight. Let her choose it if she ever does.

          BTW, I never did.

          Comment


            #6
            Like LaLem, I am an adult with scoliosis (mine is due to MS). My curvature is quite severe, but I'm not in pain from it and I do yogic breathing exercises to maximize my diminished lung capacity. I think I would be in excruciating pain if my body had to fight with metal rods, and the relative flexibility I have in my trunk enables me to compensate for the curvature in ways I couldn't if I'd had surgery. I also agree with LaMem that this is a decision that Noirin needs to make for herself if and when she feels the need. I'd listen to the Shriner's people.

            For every ten people you talk to who've had a good result from the procedure, there will be ten who regret it - everyone is different, and consensus in serious medical matters is a rare bird. It won't be possible to unring this bell, so don't feel rushed and pressured into making this decision for Noirin. Surgery of this magnitude brings its own set of problems down the road - sometimes many years later. Again agreeing with LaMem, I think that less is more if Noirin's doing well with her brace.
            Last edited by Bonnette; 5 Aug 2014, 12:15 AM. Reason: spelling
            MS with cervical and thoracic cord lesions

            Comment


              #7
              I'm glad I had mine when I did a) because it was having a effect on my lung capacity b) I was still young enough to bounce back from the procedures relatively easy, I dread the idea of having the same level of surgery in my 20 or 30's. I'm actually kind of leery of at least the Shriners in Washington state., heard of way to many kids paralysed as a result of scoliosis surgery there, it's one thing for something like that to happen when there was no cord function monitoring technology but in todays times? To me it screams of surgeons being overly aggressive or poorly trained.

              Comment


                #8
                Great to read comments from people with experience. I think you hit on something for Noirin's Mum and myself to work on. Do our background work on the doctors (as mentioned above) AND contact as many people as possible to get their take on the surgery. It may even be possible to have the doctor's office contact other parents that have been in this situation and have them call/email.

                I might start on that latter part today and see what they say.

                Comment


                  #9
                  We have teens to young adults in our gym who have Harrington Rods(some at Shriners, some not). We chose not to have our son go through the operation(injured at 14,now 20). I would say that as our son ages and stops growing his need for adaptive bracing to prevent and straighten his scoliosis has ebbed a bunch. Those who had the surgery recently have had no major post surgery complications yet. We have seen older patients who had the surgery 5 to 15 years ago complain about many rod related issues. Shriners told us that it was necessary to have the surgery 5 years ago, we are glad we decided against it. It is a lot of work positioning, stretching and adjusting his chairs, but we feel it has been worth every ounce of it.
                  I am not a Doctor and do not know your child's specific problems and needs. I hope whatever you opt for it works out well for all of you.

                  Comment


                    #10
                    Thank you all so much for your interest in Noirin and all your advice in relation to the scoliosis. i am happy to have Domosoyo in the same boat unfortunately for her but not for me!
                    Your experiences really have confirmed a lot of my worries and i just need to relay these to her consultant. I asked Noirin herself yesterday what she wants and she says to continue with brace but originally wanted surgery as thought would be good opportunity to ask us for a horse!!
                    My husband suggested that she get one in Spring if she accepts a more rigid brace and tolerates extra physio and restricted sleeping positions. of course she said yes but can I keep up my end of the bargain and enforce all this therapy and repositioning at night??So wish I visited your gym nrf when we were last talking and when i was in shriners as havn't come across any physio here that will deal with spinal stretches other than the usual ball stuff and spinal twist but how do i get rid of the rib hump and derotate?
                    Also neither myself or my husband know anything about horses so will be more risk with horse than surgery!. Will need to hire instructor- oh dear going around in circles.
                    No luck getting in contact with other kids that have had sci and surgery accept for 2 that actually got their sci because of surgery- not very promising even though different consultant.
                    Did meet a girl in shriners that had fusion-same level as noirin and i saw her 6 wks post. she was in power chair and looked extremely uncomfortable and stiff-even looked straight ahead-wouldnt turn head. will email her mum if can find contact and see how things are now 2 years post. will keep you updated and thanks so much again.
                    Another concern my husband has which is probably a question for Dr. Young is does this surgery affect her ability to receive stem cell treatment in time to come?

                    Comment


                      #11
                      Hi Sonia,

                      You can put us in the same boat too unfortunately - doctors have discussed rods with us several times for my son.

                      Obviously every case is different, but my view is that if there is a doctor out there that says not to have the surgery, then that's the opinion I will listen to. Our son is pain-free, active and enjoys life - if we made the decision to put rods in (for both lung capacity and spine straightness) which resulted in pain, lack of mobility, further paralysis or anything similar, I would find it difficult to deal with the situation (knowing it was my decision that resulted in those outcomes). And that's not even considering the relatively short term recovery period, which we already know would involve pain, lack of mobility, and lack of exercise....

                      As we've discussed previously Sonia, my son doesn't have a brace (but we are still considering that). Nor does he have any night-time positioning (or re-positioning). But he does do a lot of physical therapy (WalkOn / Project Walk plus similar), plus chiropractor, plus acupuncture.

                      As for the horses, having a sister who has owned one since being a child, best of luck if you decide to go down that route - hope you've got plenty of money to spare! (In case you hadn't guessed, they're not my favourite animal!!).
                      Gordon, father of son who became t6 paraplegic at the age of 4 in 2007 as a result of surgery to remove a spinal tumour.

                      Comment


                        #12
                        Gordy, So good to hear from you! Met a young boy from Dunfermline while in stoke mandeville this summer-much the same age and level of injury as Noirin and your wee man. they would have had a ball together. THe poor nurses are only recovering now from all the wheelchair racing in the corridors!
                        Have taken a while to reply as took time out to do some thinking and soak up all the advice.
                        Have decided not to go for surgery -notified spinal liaison nurse of my concerns but no reply! Have spent a week traveling ireland and staying in hotels much to the detriment of Noirin's tail bone-not the best of mattresses and out of bedtime routine. Just discolored not broken but enough reason to reinforce my thoughts that she's not ready for surgery- needs a lot more building up.
                        I emailed a girl that had the fusion done in shriners 2 years ago and she says it was a good decision as she no longer needs to wear brace but her hips got very tight as unable to stretch or tummy lie for 6 months and her tail bone became more prominent but is gradually improving now 2 years later. She found it very difficult to be dependent on turning in bed and dressing and bowel bladder care and frustrated at not being able to twist or lift things. She has given me her mums email too to get her perspective.
                        In my mind i now am weighing up hip deformity and increased pressure risk v scoliosis deformity.
                        I would love to hear Dr. Young or KLD's opinion but at the minute we are going to get casted for a brace that will attempt to control the rotational forces and sleep system is ordered.
                        THanks again to everyone for responding. best wishes to everyone, Sonia.x

                        Comment


                          #13
                          Sounds like a good plan, Sonia - a sturdy, flexible mental template that will allow you to store, review and assess facts/impressions in the days ahead. All best wishes to you and Noirin!
                          MS with cervical and thoracic cord lesions

                          Comment


                            #14
                            Sonia-
                            You need to do what you feel is right for your child. Everyone has a different take and a different reason for recommending or not recommeding a procedure. For now, it seems as though you are comfortable with your decision, and that is good.

                            It is hard to give any medical advice without knowing the patient or seeing their xrays/MRI's, etc. As long as you monitor the situation, I think that she will be fine. You really want to make sure that she doesn't lose function: ADL's, moibility and respiratory. After that, the cosmetic things are really personal. I will tell you that the experience I have had with children and bracing changes dramatically as they get older and become adolescents. As long as this is not a battle with her, great! If and when it becomes one, than you may want to look at your decision with a different pair of glasses on. But you still have at least a couple of years for that.

                            CKF
                            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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