Update on Katelyn - Trunk shifting and future pain

[smileyskl]

I havent't posted in a while since Katelyns surgery. Things (scoliosis related)have been kind of at a standstill with my daughter and we have been very busy catching up on homeschool things and keeping other children this summer. Katelyn just had her almost 6 month checkup since surgery. She has been wearing her brace again since about 8 weeks post op because of severe trunk shifting after being fused T2 - T12. The brace has helped tremendously with that and at this checkup he told her she could take it off and we will see him again in three months to see if it stays corrected. She is holding right now top and bottom at 21 degrees (51 top and bottom before surgery). We are happy with the way she looks but I am worried because if she doesn't have rods at the bottom and it doesn't completely straighten up then will she have lots of back pain as an adult? She turns 12 in Nov. so she still has some growing to do. I know there is not an easy answer to this question and her doc says its impossible to predict and that she could need further surgery later. I am just wondering if there are others on here who can relate to this scenario and maybe give some insight. Thanks!

[emma12]

I don't get on this forum too often anymore, but, thought I'd add what I know. Somewhere last year (I think, could be longer ago) I've posted on my daughter's issues after fusion from T2-T11. She has trunk shift of 2.5cm, we are in the watching and waiting mode. She wouldn't commit to trying a brace again (didn't have good compliance in the first place), although reading your post I wish we had tried it. At her last appt. in Mar, it appeared that it may be slightly worsening. As I've watched her over the summer, it looks worse to me, also. She is now complaining about her ribs and hip hitting together when she bends to the right (I can see that could happen).

As far as the future, we've had several opinions, and were hoping it wouldn't worsen--but, 2 opinions (surgeons who also treat adult patients) have very strongly advised not to do any more surgery at this time, she would most definitely have issues if we fuse to L3 when she is an adult (to further confuse things, she has some naturally occurring fusion from L4 to sacrum which would leave only one disc to allow movement). 1 Surgeon (only treats children) said fuse to L3 immediately, or she'd have further problems as she ages. And 1 was in the middle of the road, ok with either action, said we could certainly wait and see if it worsens.

So, again, nothing is black and white, and I wonder constantly if we are making the right decisions. And hoping and praying she doesn't have issues all of her life with her back. She has no pain now. From my opinions that we've got, if your daughter's curve is holding where it is and she looks good, don't fuse further. Let her growth continue and see what happens. Maybe they'll have a better method in the future also, look what's happened in the last 20 years. Good luck to you

[Pooka1]

Look, I obviously don't know anything about this but I have three comments nonetheless...

1. First and most important, all cases are different. No single testimonial or group of testimonials should affect your decision what to do over and above what experienced orthopedic surgeons say.

2. There is a teenager(?) on SSO who had a double major curve and only had the top fused (March 2008). She is having many problems now in her lumbar (3 bulging discs, osteoarthrosis, spinal stenosis, and DDD). Here is a thread about it...

http://www.scoliosis-support.org/showthread.php?t=8145

3. Many kids (and adults) with a single thoracic curve still seem to get fused to L1. There must be a reason. And if that is the case, I don't see how kids with double major curves can avoid going into the lumbar at all as we have seen but what do I know?

Good luck with your daughters.

[smileyskl]

Emma, you made a really good point about waiting because who knows what the future will hold in regards to treatment. That is so hard to just watch and wonder when you want to give your children all the help you can to help them be productive adults in society. I guess there is just so much we can do. How long was it after your daughters surgery until her trunk shift got worse and how old is/was she? I am curious if it stops pretty much after puberty or if that has anything to do with it. My daughter is an early bloomer so shes been through most of hers even though she is only 12. I hope things work out for ya'll and I agree, not to fix what is not broken..... but still very curious as to what the future may hold for these children

It is very frustrating indeed trying to decide on treatment for a condition that is so unpredictable. When Katelyns trunk shifted so soon after surgery - lots of friends and family were angry and asking why her surgeon just didn't go ahead and fix the bottom part while she was already in surgery. His answer, because lots of times straightening the top works and no further correction is needed because of the whole compensatory curve thing. That said, he was also very upset when she had the trunk shift but he told her that the brace could possibly "fix" it instead of just "holding" it this time if she wore it correctly. She wore the brace absolutely every second she could the second go round. I will have to say that I am surprised that it seems to have worked - though she has only been out of the brace for a couple of weeks so time will tell. I guess like any parent, I just don't want her to end up with severe back issues as an adult because we didn't make the right decisions with her as a child. I am wondering if there is a "right" decision.

Thank you Pooka for your comments and link (I am going to read it now). It does sometimes feel like we are delaying the inevitable and sometimes I have to wonder myself why the surgeon didn't just go ahead and do it. I will say that I feel comfortable trusting his opinion however, he is the first to say that there is no way to tell so who knows I am as confused as ever. I am glad that at least I can vent to those who seem to understand

[smileyskl]

Emma, you made a really good point about waiting because who knows what the future will hold in regards to treatment. That is so hard to just watch and wonder when you want to give your children all the help you can to help them be productive adults in society. I guess there is just so much we can do. How long was it after your daughters surgery until her trunk shift got worse and how old is/was she? I am curious if it stops pretty much after puberty or if that has anything to do with it. My daughter is an early bloomer so shes been through most of hers even though she is only 12. I hope things work out for ya'll and I agree, not to fix what is not broken..... but still very curious as to what the future may hold for these children

It is very frustrating indeed trying to decide on treatment for a condition that is so unpredictable. When Katelyns trunk shifted so soon after surgery - lots of friends and family were angry and asking why her surgeon just didn't go ahead and fix the bottom part while she was already in surgery. His answer, because lots of times straightening the top works and no further correction is needed because of the whole compensatory curve thing. That said, he was also very upset when she had the trunk shift but he told her that the brace could possibly "fix" it instead of just "holding" it this time if she wore it correctly. She wore the brace absolutely every second she could the second go round. I will have to say that I am surprised that it seems to have worked - though she has only been out of the brace for a couple of weeks so time will tell. I guess like any parent, I just don't want her to end up with severe back issues as an adult because we didn't make the right decisions with her as a child. I am wondering if there is a "right" decision.

Thank you Pooka for your comments and link (I am going to read it now). It does sometimes feel like we are delaying the inevitable and sometimes I have to wonder myself why the surgeon didn't just go ahead and do it. I will say that I feel comfortable trusting his opinion however, he is the first to say that there is no way to tell so who knows I am as confused as ever. I am glad that at least I can vent to those who seem to understand

[smileyskl]

Hi Emma, after looking back, I do remember you writing me about your daughters trunk shift before. You responded when I was so devasted shortly after her surgery. I am sorry that even now you are still watching and waiting and I pray that your daugter will get the correction she needs. It is soooooo frustrating - oh, did I say that already? Thanks for taking the time to comment again. Like I said before, just knowing others who have been there or are there makes a world of difference to me.

Pooka, I couldn't get that link to pull up, but I am going to try to find it Thanks!

[Pooka1]

I just tried the link and it works but maybe only because I was logged in at the time?

The thread is in scoliosis>general discussions

and is titled

"PAIN help!!!!!"

and was started by RodsRMe.

It is presently on the third page of the general discussions

[Pooka1]

Okay I logged out and still was able to click that link and it took me to the link. So I don't know why it didn't work for you.

[smileyskl]

Pooka,

Well, the link wouldn't work when I clicked on it but it did let me open it by right clicking and choosing open (go figure) anyway, Thanks.

I went to the site and read some of her posts - that is just the kind of thing I worry about. I don't have time to check out all her posts right now but I plan to go back and read some more. I didn't even know that website exsisted. Thanks for the information

[laurieg6]

What do you all mean by "trunk shift"? I'm imagining it's when the upper body/torso looks off-kilter to the hips/pelvis but I'm not sure.

Do your daughters stand up straight - how's their posture?

I'm asking because, in case you haven't read my post in the congenital section, I was told that my son might need another surgery "to the pelvis" at some point and I'm really worried. His posture is sort of tilted/curved unless he remembers or is reminded to stand up straight.

I will, of course, get more opinions if our surgeon actually recommends surgery or if the heel lift we will perhaps be trying doesn't work and my son's posture doesn't improve. He has no pain and is mostly doing really well. But like some of you said, I just really hope that all these back issues don't follow him into adulthood and that we can put all this behind us at some point very soon.

[Pooka1]

Well one thing to remember is that she is having great pain associated with riding.

Non-scoliotics can have great pain and even serious back injury from riding, especially with bad technique.

I have a two-level natural fusion in my lumbar that is giving me great pain more and more, almost on a daily basis now. I likely acquired it riding with poor technique at sit trot in the early 1990s when I lost the disc.

I was in NYC visiting family and friends recently and I actually had to take a pain pill twice because I couldn't stand up without great pain. I can't seem to stand for very long at all any more. Luckily, I never have pain while riding.

It could be the teenager on SSO wouldn't have so many problems so early after fusion at least if she stopped riding which, as a rider myself, is not an option.

[smileyskl]

Laurie

I have followed you posts about your son and I am not sure if his posture would be the same thing or not. Maybe if its causing him to favor one side. In katelyns case, right at the end of her fusion - T12 - her body was just completely shifted to the left - like her top half of her body and her lower half were not lined up. It was VERY upsetting to look at but looks much better now. I hope and pray that these children can put these things behind them too. Best of luck to you

Pooka,

I am sorry to hear that you are in pain while standing I am not a horseback rider - though I love horses and have ridden before - but those I know who love to ride, say its their life and there is no way they would quit I can see where riding alot especially if done improperly could cause great pain. I know just the little bit I have been on horses doesn't feel too good I hope and pray my daughter doesn't end up with that sort of pain. I wonder if rodsrme is having future surgery? I will have to go read her other posts. Hope you are feeling better. Have you have yours rechecked??

[Pooka1]

Pooka,

I am sorry to hear that you are in pain while standing I am not a horseback rider - though I love horses and have ridden before - but those I know who love to ride, say its their life and there is no way they would quit I can see where riding alot especially if done improperly could cause great pain. I know just the little bit I have been on horses doesn't feel too good I hope and pray my daughter doesn't end up with that sort of pain. I wonder if rodsrme is having future surgery? I will have to go read her other posts. Hope you are feeling better. Have you have yours rechecked??

Yes what I was suggesting is that RodsRMe may not have that much or any pain for even perhaps any of those ancillary conditions if she stopped riding. But I don't know that. And it just seems like she has so many issues just a year out from surgery that there might be something else going on. Every case is different.

I was just trying to say that if non-scoliotics like myself can so screw up their back from poor riding technique then it really doesn't surprise me that fused folks, even stable ones, can't have serious problems if they don't have perfect equitation. And NOBODY has perfect equitation!

I certainly hope RodsRMe gets a revision but she mentioned that she is now considered a complex case and nobody wants to touch her. I really don't understand that comment as there are any number of complex cases that have been revised as far as I know.

As for me, I am okay most of the time and can do fieldwork if I keep moving and don't try to stand too long. Based on the type of pain I have getting now, I suspect my fusion is destabilizing the lumbar and I will lose more discs/levels.

If it gets debilitating to where I can't do fieldwork or if the pain is too much, I will get a radiograph and diagnosis. I'm guessing it is the fusion propagating up or down the lumbar or both. There is something about the lumbar I guess that doesn't tolerate even a one level fused area although mine was stable for about 18 years (i.e., no pains until this year). I obviously don't have any noticeable lose of flexibility with the loss of only one level to date but I would trade some flexibility to be able to stand for longer periods of time without pain, especially if a surgeon told me my lumbar would never be stable absent a fusion.

Thanks for the kind thoughts.

[laurieg6]

I hope you feel better soon Sharon and don't need surgery!

[Pooka1]

I hope you feel better soon Sharon and don't need surgery!

Thanks Laurie but I think (hope!) it is premature to mention surgery for me! I only just started taking pain pills for lumbar pain and that was after walking around a lot in NYC when I was visiting my mother and taking my two young associates () into Manhattan and such.

I'm just saying I would not be surprised to hear I was losing another level or two based on having the same exact type of pain I had when I lost the first level. You don't forget that type of pain associated with a crushed disc and natural fusion. Luckily it went away several weeks after it started but I'll never forget it.

Maybe in a few months a few more levels will fuse on their own and I can be pain-free for another 18 years. Or maybe I'll get hit by a bus tomorrow and not have to worry about it. Some days, the bus scenario looks better. (JK!) I'm raising two kids, 5 guinea pigs, a horse and a husband... no time for throwing myself under a bus.