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Thread: Question regarding curvature after surgery

  1. #1
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    Feb 2009
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    Question regarding curvature after surgery

    New to forum format so not sure what section I am supposed to post this to get the most exposure/hopeful replies. Son is 16. He has CP and suddenly developed scoliosis when he was 12-13 years old. He had gone into puberty, first check up showed approx. a 47 degree curvature, next one was approx. 82 degrees. He had surgery. Double rods/posterior. I have a call into the surgeon to ask some questions, but basically from my understanding he had both a thoracic and lumbar curvature....worst was the lumbar...some damaged vertebrae. If I understand it, the L-1 to L-4 was done from the side/front with fusing/screws & whatever else they did. From T-3 to the Pelvic is the rods with what looks like to me wires.

    Initially his back looked great. Over time though the curve has increased...I'm thinking the thoracic area...on the print out of the xrays it looks like a large C and looks like it continues up above the rods in the neck area. That could just be the way I am looking at it. He now has about a 72 degree curvature...give or take. I understand that there is both curvature and rotation involved. What I'm trying to understand is how it happens after rods have been put in. Anterior work was not done due to even more of a risk than he already was.

    I'm hoping to get a better "picture" in my mind when I talk to the ortho surgeon again. We are setting up tests...sedated...to check pulmonary function. He's never had that done and has no history of pneumonia's. What I'm looking for is anyone who has had surgery done and then had the curvature re-occur and what their experience has been in terms of "what happens next".

    Karen E.

  2. #2
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    Hi Karen,

    I would have to think his CP has more to do with post-surgery progression of the curve than anything. Is the curve going to the weak side of his body? Or his he symmetrical in his CP? Does he stand at all? I wonder about positioning when they did the xray... did they get him as straight as possible?

    Good luck. Hopefully the doc has lots of experience with kids with CP and scoliosis.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  3. #3
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    Feb 2009
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    Continued Curvature/Carmell

    Tommy does not stand. Back when he was smaller he could use a pony walker and stander. He has not been able to use either since the scoliosis. He is both loose in the trunk area and tight in the arms and now the legs. He is tighter on the left side of his body, used to be able to fully extend his right leg but not that much anymore. It's possible that this last xray wasn't quite as sitting up simply because he is contracted on the left side...hip tilted upward. After the surgery his chest was even, hips even. What we have seen over the past couple of years is a gradual protrusion of the rib cage on the front left side (if you are standing behind him) and the right side is pushed back with an elongated hump. Basically he looks like he did before surgery. He sits on his right butt cheek with the left one raised. We just got his molded wheelchair which does help a lot with him being able to sit more comfortably. I did notice though that if he is in it a bit long or is tired he ends up like before....sorta leaning to the left. I guess what I'm trying to grasp is how the spine could continue to curve after the surgery....where it's curving. I faxed my list of questions to the ortho surgeon so hopefully will hear back soon. Maybe part of the problem is that when I saw him right after the surgery in terms of the chest/back...no hump, chest even, hips even I thought it would stay that way...was really happy with the surgery...now it's sorta like "what now?" He has all that hardware in him yet looks like he did before surgery and the other question is whether it will level out or will it continue to get worse. If it's going to continue to get worse did we just prolong the inevitable? Are we still faced with whatever the results would have been had we not had the surgery done? Seems like all I have are more and more questions...lol

    The doctor is at Univ. Of MI and deals with both kids that have other issues along with a lot of kids with physical disabilities. I talked to several parents here that have one or more child with CP and they have had surgeries there and by the same doctor.

    Thank you for your reply....Karen

  4. #4
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    Sep 2008
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    Dear Karen,

    Even though I do not have an answer for you, I wanted to say that I am glad to finally see you here!

    I do hope you can get some answers for Tommy. The one thing I do know is that you will find *wonderful* support here.

    One thing that I did wonder, and forgive me if I missed it, but how many physicians are following Tommy's case. I know you said that the one doctor is at U of MI--have you gotten second opinions?

    Have you tried www.srs.org (scoliosis research society) search for doctors?

    Welcome!

    Marian

  5. #5
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    Continued curvature post surgery/Marian

    Hi...yep, managed to get on this time. Hopefully will get some input. Right now to be honest I feel like our son is the only child in the world with Cerebral Palsy, scoliosis, had surgery and then had the condition or curvature get worse after surgery. I know it's probably not the case but it's very frustrating. Still waiting to hear back from the ortho surgeon, will be seeing the pulmonologist...waiting to hear from them for appt. Now it seems they will be doing chest xrays for the pulmonologist to look at and determine if further tests need to be done. Should be interesting because last chest xrays he had due to possible pneumonia...done at a local hospital...they did three times and in the end it was "we don't think he has pneumonia (sp), doesn't look like he does, but because there are areas of his lungs we can't see due to the hardware and curvature we are treating it as pneumonia". Not sure what the pulmonologist will be able to tell other than maybe further testing will need to be done.

    Did check out the site you mentioned. Thing is we have to get authorization from our insurance to go outside of network providers and I need to call them to find out what is involved in getting a second opinion if that's the direction we decide to go. The ortho surgeon deals with disabled children and able children...has done a lot of this type of surgery...so it's not like I don't have confidence in her ability. I just don't understand what is happening I guess and that leads to the frustration. The reality is that with CP you can have such a wide range of effect on a person from so mild you don't really even realize they have it...to way more severe than our son....you can have so many variables and so there is no concrete answer or guarantee as to outcome. I know one little boy, same age as our son...always thought of him as being similar in a lot of ways...other than the fact he can hear and so communication has been a lot easier for him and his family...has a g-tube like Tommy...yet can eat somewhat orally. He's had multiple bouts of pneumonia this past year, had spinal surgery for scoliosis and had major complications afterwards...where as Tommy did just fine and has never had any pneumonias other than the "possible one".

    Anyways...have a feeling that it's going to be a "see what the pulmonologist thinks", see what the answers are that I get from the ortho surgeon and "wait and see"....Short of going back in, which we don't relish that idea, I'm not sure what else we can do.

  6. #6
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    Mar 2007
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    Karen,

    I'm so sorry Tommy is having these problems. I know what a huge disappointment & frustration it is to have scoliosis corrected wonderfully, only to have it go down the loo post-haste....and all I can say is, I'm sorry you're among the unlucky few to go through it.

    I don't have CP, but I am a non-walker with spina bifida, scoli, & a bunch of other stuff. I had T3-L3 or so fused when I was 12 (1999) for a thoracic curve of about 75 deg & rapidly progressing (+ rotation), pressing on heart/lungs, etc.. By 2 years later, I had a 65 deg curve + rotation below the instrumentation. My surgeon had been a little unsure about whether to fuse that area the first time around but as I was still walking a bit at that stage, he wanted to preserve as much flexibility as possible...but, eventually it did curve to the point of needing surgery. At the first post-op appointment/x-rays (at about...a month or two post-op), he could already see on the x-ray that the bolts into my pelvis had moved - & it all slowly went downhill from there, ending with my left ribcage sitting over my entire left pelvic bone by about 2003. The hardware failure in my case was due to osteoporosis (diagnosed in 2002 or so). It took basically right up until mid-2008 for my surgeons to plan the L3-pelvis revision surgery I just had, & they had to wait for a lot of new technology, methods, & instrumentation...thus far, I've had good results, & my first x-rays looked stable!

    Anyhow, sorry to ramble... My point is that especially with massive improvements with surgeries all the time these days....I do understand how isolating it can be to be in the small minority of patients for whom the op doesn't work well for...and the massive disappointment of such a high-stakes, Big surgery failing - especially watching as the hips/shoulders/ribs become more & more uneven. Throw in a disability &/or other medical issues to complicate matters, and it's really easy to feel like you're alone in the world! As much as we don't want extra surgeries, though - just because the original one/s didn't hold, doesn't mean that the new one won't be great. There are so many emerging surgical techniques & instrumentations that surgeries are getting more effective all the time. There's still reason to hope

    I don't know how mobile Tommy is, but if he's able to type easily, please tell him to feel free to PM me if he ever wants to. It sounds like you gusy have some good friends who have CP - but if he or you ever wants to chat to someone who's been there with the scoli-revision stuff, I'm around

    Best wishes for his visit to the pulmonologist. Please keep us posted. I'll be thinking of you both.

    Take care

  7. #7
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    Quote Originally Posted by Karen E. View Post
    . . .Did check out the site you mentioned. Thing is we have to get authorization from our insurance to go outside of network providers and I need to call them to find out what is involved in getting a second opinion if that's the direction we decide to go. The ortho surgeon deals with disabled children and able children...has done a lot of this type of surgery...so it's not like I don't have confidence in her ability. I just don't understand what is happening I guess and that leads to the frustration. The reality is that with CP you can have such a wide range of effect on a person from so mild you don't really even realize they have it...to way more severe than our son....you can have so many variables and so there is no concrete answer or guarantee as to outcome. I know one little boy, same age as our son...always thought of him as being similar in a lot of ways...other than the fact he can hear and so communication has been a lot easier for him and his family...has a g-tube like Tommy...yet can eat somewhat orally. He's had multiple bouts of pneumonia this past year, had spinal surgery for scoliosis and had major complications afterwards...where as Tommy did just fine and has never had any pneumonias other than the "possible one".

    Anyways...have a feeling that it's going to be a "see what the pulmonologist thinks", see what the answers are that I get from the ortho surgeon and "wait and see"....Short of going back in, which we don't relish that idea, I'm not sure what else we can do.
    Dear Karen,

    I am glad you were able to get on the board. I'm sorry that sometimes you feel so alone. I know you are not, even if it seems that way.

    I hear you about the 2nd opinions. We ran into that problem last year w/dd. The specialists we wanted to see (and they were considered either very good or top in their field) were not covered by insurance. It's a long story, which I won't bore you with here, but we went out-of-network to get the 2 other opinions. Insurance did pay for one, but only after the family dr. intervened. We picked the other up on our own--and God bless the surgeon's office, were not charged the full amount for the consult.

    I had only encouraged you to try to get another opinion b/c I know there's lots of docs who have seen lots of things. I know you have picked the best doc for Tommy--I guess I was just thinking that having someone take a fresh look at it might help. I was in no way telling you what you should do and I hope you don't take it that way.

    I would also encourage you to stay w/this board and the other email loops you are on b/c you might see something that you haven't seen before in terms of what questions to ask/etc. I know this board has been a wealth of info for me along w/the added benefit of great support.

    Even though we may not be able to identify completely w/what's going on, know that we are all here for you. Please do continue to share what's going on w/Tommy.

    Please let us know what the pulmonologist and ortho surgeon say. Know we are thinking of you and Tommy.

    Marian

  8. #8
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    Sep 2008
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    Just doing some more thinking, but did you say that Tommy had an MRI to rule out any other underlying conditions w/the spinal cord that might be causing the scoliosis to progress?

  9. #9
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    Sep 2008
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    Also found this thread under a search for "cerebral palsy" on this forum:

    http://www.scoliosis.org/forum/showt...cerebral+palsy

    Maybe some of these moms can help you too if you send them a PM.

    Please keep us posted, too.

    Marian

  10. #10
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    Feb 2009
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    8
    [QUOTE=discombobulated;72256]Karen,

    I'm so sorry Tommy is having these problems. I know what a huge disappointment & frustration it is to have scoliosis corrected wonderfully, only to have it go down the loo post-haste....and all I can say is, I'm sorry you're among the unlucky few to go through it.


    Hey...thanks for the reply...just wrote this really long response and it decided I was not "doing anything" for too long I guess and so it logged me out...then I tried to log back in and lost my entire response to your post....sooooo...I will get some things done and try again...ugh...like things aren't frustrating enough without having to try and re-write everything...lol

    Be back...
    Karen:

  11. #11
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    Mar 2007
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    213
    Oh, Karen...I've had that happen to me many times - it is Infuriating! Don't be in a rush to write - just wanted to let you know I'm around...actually, I'm often around, lol.

    If it helps, I've found two pretty easy ways to avoid a forum disappearing your posts:

    1. When you sign in before you post, click the little check-box called "Remember Me" (or similar - it's the only one there). This means you won't get signed out while you're here, & all the next times that you come, you won't have to bother signing in. For some reason, I don't find this 100% reliable on NSF, though - but it is pretty reliable for the once-off minimal effort

    2. As an insurance policy, before I click to "Submit" a post, I always use my mouse or keyboard shortcut (Ctrl-A) to highlight the whole message, then take a copy of it (right-click --> "Copy", or Ctrl-C). Then, if I'm "Remember Me" signed in, I'll hit "Submit". Usually that will work, but on the off chance that it doesn't, I just hit "Reply" again & paste the message into the textbox (right-click --> "Paste", or Ctrl-V). OR, if I've just signed in for the single session, rather than pressing submit right after typing & copying the text, I'll refresh the page (one of the buttons at the top of your browser, or F5 on the keyboard). It asks me to sign in again, & as you'll have noticed, takes me back to an empty textbox But...that's fine, because I copied the post, so I just do the Paste stint again, & press Submit.

    And, if you press submit & run up against the Log-In request but forgot to take a copy, never fear! Press the back button on your browser or the backspace key, & your message should still be in tact. Take a copy, then either refresh the page --> paste --> submit, or submit --> log-in --> paste --> submit.


    Hmmm....I really hope all that made sense! I know I'm most likely telling you things you already know about copying/pasting etc., but it's better to be comprehensive, hey. Goodluck for next time! I'll look forward to hearing from you when you get a chance

    Take care.


    EDIT: By the way, the same disappearing act can happen with Private Messages (PMs) but can be fixed using any of the above, too.

  12. #12
    Join Date
    Nov 2007
    Location
    Houston, TX
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    LMAO, disc ... I just compose mine in Notepad and then paste in (especially the particularly verbose ones ... which is about ALL of them).

    The number of lengthy, of-so-profound (~whatever! ) posts I've lost on here just simply can't be measured - LOL!

    BTW, if you lose one and have a *forward* arrow in addition to "back" you should always try that first ;-).

    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  13. #13
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    Mar 2007
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    ROFL!! OR, Karen, you could do as Pam suggests

    In my defense, I came up with that mess to combat the problem of my computer crashing whenever I open too many programs... Plus, I rarely intend to make such long posts! "I'll only be like, 2 minutes, no need to draft it first!"...yeah, right, like that works out well

    Well, at least you have options now, Karen!

  14. #14
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    Feb 2009
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    Posts/continued curvature after surgery

    Lol..yep...good thing I copied so I could paste cause it booted me out...

    ----

    Thanks for the suggestions...actually I usually got into the habit of doing that on other sites or just doing mail cause never knew when it was going to get messed up...would copy it and then if it messed up would just have to paste and re-send...so I will be doing that when I finish this...just in case...lol

    Did hear back from sons ortho surgeon and from the one that was on line at a spinal site...several doctors on the web site and one that deals with disabled children and ortho issues asked me to e-mail copies of the xrays. In the end it basically came down to having to do the surgery earlier than later due to the fact that it was progressing so quickly...no luxary to wait till he was a couple years older and "hope" he did't grow much. He did though and that's why the increase in the degree of curvature. Currently it's holding pretty stable...and it's thought that he won't grow anymore. When he did grow the vertebrae rotated and thus the rib cage deformity. He has an appointment in May with the pulmonologist to do xrays of the lungs etc to get an idea of any effect the curve or the rib cage deformity is having on that area. At that time they will determine whether or not more in depth procedures are needed...CT or MRI or whatever. He will then see the Ortho Surgeon again.

    The whole downside of neuromusular scoliosis is that so much depends on the child and the degree of severity of, in our son's case, the cerebral palsy. He has the spasticity in the limbs but really floppy trunk control..well not so much floppy anymore with the rods. Once he grew the spine could not support the growth because they had no muscle support. Neither surgeon felt that it would be a good idea to go back in. They could go back in, re-do the spinal surgery but to do it affectively would also require going in from the front and that's too risky respitory wise. While they might correct the curve a bit more they cannot correct the ribcage deformity...there is a procedure but the ortho surgeon said basically he is too high risk, would end up creating even worse problems. So for now it's monitoring...make sure it has stabilized, make sure there is no pulmonary function impact. Thanks again for the input...did find on another section discusion about this very same thing...need to check it out but not sure if it's children with only scoliosis to deal with or children with severe disabilities (neuromuscular related)...will check it out though...

  15. #15
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    Sep 2008
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    Hi, Karen.

    What is the ribcage deformity? It it a rotation?

    It sounds as if you are getting some answers, although the wait and see must be frustrating--it was in our case.

    Please do keep us posted. Know we are all here for you and Tommy. And take care of yourself, too.

    Marian

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