ScoliMoli! Instincts were right.......

[flowerpower]

We have been in the "watching and waiting" period with (14 y.o.) son's scoliosis. At March 30 appt. he measured 44T/42L. Too far along for bracing, the doctor felt he would probably need surgery by next summer. We were not due to see doctor again until late Sept./Oct. but instinct kept telling me he should be seen sooner. I happened to call for appt. last Friday and it just so happened there was 1 cancellation yesterday so we were able to grab that spot. (otherwise, we would have had to wait a couple of months anyway, b/c doctor is booked). Anyway, the nurse was very perplexed as to why we were there since they had just seen us 3 1/2 mos. ago. All I could say was "mothers instinct" and that was enough for her (made me feel good) and she whisked Joe off to the x-ray room. When the doctor finally came in, I could tell by the look on his face and by the way he got to quickly examining Joe that there had been a change. Sure enough, the x-ray showed progression of 49T/44L, and in addition to curve, spine is also twisting. Dr. also said Risser was 0, which means he still has alot of growing to do, but waiting is no longer an option. Dr. said he will fuse from T5-L4. I guess scheduling surgery and pre-op testing are next on the list. I feel like we are at the top of a very high roller coaster about to plunge down. My son doesn't say much, just asked doctor how anesthesia was administered. It has been a great help to hear from others who are going through or have been through this already. Anyway, that's our latest update.

FlowerPower

[Carmell]

Hi,

Sorry to hear that your instincts were correct. However, I hope you don't feel rushed into having surgery just yet. There are several variables that need to be considered. Since he already has a rotation of the spine (most scoliosis patients have rotations - that just the nature of the beast) have they determined if the rotation is worse than before? His Risser score is still zero - which means his bone structure has a lot of growing left. Do you think fusing such a large part of the spine would help or hinder his future growth? What are the risks of having the rotation above and below the fusion cause problems through a major growth spurt? Growth spurts in general - how much will a growth spurt influence and already fused spine? Remember the margin of error in reading xrays - there is always a +/-5 degrees margin of error, even when the same person is doing the measurements. Most teens with scoliosis have fairly flexible spines. An xray will have a +/-5 degree change depending on what time of day the xray is done, if the patient was standing more on one foot than the other, if they were looking a different direction during the test, etc. Lots of variables.

My point is to make sure fusion surgery is the right thing for him, at the right time. Good luck with your decisions.

[starchild_81212]

hey im shannon im 13 almost 14 i had a posterior spinal fusion may 25th 2005 my curve was 52 degrees when i had the surgery now is like zero. my vertebreas didnt twist. i had a brace for 2 years i didn't wear it and now im kinda glad i didn't when you get out of your brace (my sisters friend has this problem) you have bad knees becasue you cant bend at the waist. chiropractors do nothing at all i think they may actually make it worse. i was only in the hospital for 3 days and beleive me its not that bad. my docter also says i have growing left to do he said the fusion shouldn't affect my growing that much. well hope this helps ~bye~

[flowerpower]

To Shannon and Carmell,

Thank you both for your responses. You have both been very helpful. Shannon, I am glad to hear your surgery went so well.

Carmell, thanks for your cautions and concerns. I will try to address some of the issues you brought up. I didn't mean to sound so urgent (I was just feeling quite frantic after our appt. I guess). While we are not planning on scheduling surgery next week or even month, I think by late this year/early next year we should have it done. I learned from you guys about the +/-5 deg. margin of error (and kept it in mind) but I have noticed a steady progression since our last appt. and yes, the rotation has gotten much worse. His right shoulder, rib cage and muscles on lower left side of back are very prominent, left side of chest is starting to protrude more so than right, hips look uneven, sometimes when he stands he appears to lean to one side....since his growth plates are not even measuring on the Risser yet, that is a big concern for me and I did address this with dr. He said: (pro) surgery will help b/c he will gain a few inches in height (right now trunk appears slightly shorter compared to long arms/legs) but (con) once spine is fused it will not grow like the rest of his body which means his trunk may still end up being slightly shorter compared to long arms/legs. Either way, this whole surgery is a "Catch-22": If we do it now, it may compromise his growth somewhat; if we wait for him to complete his growth he will have to deal with his continually twisting body, I already see him withdrawing from certain activities and not being as social as before (feeling more self-conscious), surgery could become more complicated the longer we wait....one thing you did mention about "what are risks of having rotation above/below fusion cause problems thru major growth spurt" is an excellent question and one I will ask the dr. about. That's why it's so good to talk to folks here, there is so much to think about-hard to know all the questions to ask, but this time I was much more prepared with lists of questions. These are things we are still considering-hard decisions to make. Parents, when did you know it was the "right time" to do surgery?????

FlowerPower
(Renee)

[Gigi]

When we decided surgery was right for Griff

Our son is also 14. They diagnosed him with scoliosis right before 6th grade. Our pediatrician referred him to a ortho here, then when Griff's curves went beyond 40 degrees (he has a double thoracic curve and bracing wasn't really an option) that dr referred us to another specialist. Our dr takes a more conservative approach; he didn't recommend surgery unless the curve went beyond 50 degree and there was still growth left. Unfortunately, Griff's curves eventually progressed to 56 and 49 (and that was a couple of months before surgery), and despite maturing pretty early, he still has growth left, so he had the fusion surgery on June 20. It went well, he gained almost 2 inches, and he is recovering well.

It was a difficult decision to go with the surgery. Griff is an athlete, and the dr has said football will no longer be an option. Given the severity of the surgery,the natural impact and long recovery, we wanted to avoid it as long as possible. Yes, he was uneven, but he would have rather dealt with that and his muscle stiffness than have the surgery. He is ok with it, though (at least for now, although he calls me overprotective!).

The dr said that a lot of the growth in boys at this age is more arms and legs than torso, and what they might lose through the fusion, they may gain through the surgery.

You and your family will make the right decision for your situation. However, it is a serious decision, so I wish luck and send you prayers. One comment, tho; while it sucks having summer taken away, I think stressing over making up school work and dealng with that pressure by having the surgery during the school year is not a good idea.

Gigi

[flowerpower]

It is an extremely difficult decision to decide when to do surgery, and I want to hold off as long as possible. That Joe still has a lot of growing to do makes it that much more difficult. At our March appt., our initial plan was to wait til next summer, but with this latest evaluation I don't know that it will be possible. When dr. initially evaluated Joe's condition, he told us he felt comfortable waiting til curves reached into the 50's before recommending surgery, but he would not recommend holding off longer than that. Being that upper curve is now at 49 (and I do believe it has progressed to that, I look at him every day) I figure that by the time we figure out scheduling, etc., he will be at that point. Right now, dr. feels he can achieve correction be low 10 degrees for both curves. Also, if waiting til degrees get higher will increase any risks or complications even slightly, is it worth it?? If surgery cannot be avoided, then I at least want it to happen under optimal conditions.

As for school, it totally sucks thinking about having do to this during school year (again, our hope was to wait til next summer). One plus is that our school recently changed to a "modified year-round" schedule, which means a 6-week summer break, a long (3-4 week) break Dec./Jan, 3 week spring break, & a couple of other 1 week breaks here and there. So we can at least try scheduling around an extended break, if necessary. School will also set up a 504 plan, and, if necessary, a tutor can come to house (I think 1 hr. per day) bring school work back & forth, etc., during recovery.

Alot of things to consider, but at least we do have options.

[Carmell]

Hi Renee,

I'm glad you are doing your homework. It sounds like your son's situation is one of those very good examples of surgery being more important than waiting until the growth is maximized. My Braydon was similar. Had he not had a very early fusion surgery (at age 11 months) his curve would have progressed so much that any corrective surgery would have only been futile, at best, in giving his body a healthy "look". Today, at age 10, he doesn't "look" physically deformed. His body is well balanced, including his neck and pelvis being well-aligned, his hips are even, etc. Waiting too long in some cases is not a good option. I'm glad you are able to discuss these things with your surgeon. Good luck and please keep us posted on how things go. Surgery is NEVER an easy decision. You are doing the best thing for your son by being involved in the decision making process. Keep us posted.

[Karen Ocker]

It is an extremely difficult decision to decide when to do surgery, and I want to hold off as long as possible.

At our March appt., our initial plan was to wait til next summer, but with this latest evaluation I don't know that it will be possible. When dr. initially evaluated Joe's condition, he told us he felt comfortable waiting til curves reached into the 50's before recommending surgery, but he would not recommend holding off longer than that. Being that upper curve is now at 49 (and I do believe it has progressed to that, I look at him every day)
As for school, it totally sucks thinking about having do to this during school year (again, our hope was to wait til next summer).

Alot of things to consider, but at least we do have options.

I remember, in 1956, when the surgeon recommended I go into the hosp in June for the scoliosis surgery. In the 1950s this was a terrible dangerous operation requiring a year in bed(because no hardware used then) in a series of 3 casts after surgery. My mother wanted me to "have a summer" and wait till Sept.
It was the worse summer of my life. Since my curves were progressing they did not stop for the summer.

I had such terrible pain by then and my curve was more severe so I got less correction. It ended up being 100 deg.
In my case waiting was not a good idea.

I add that very same year we had two grandfathers die a month apart and the roof of our summer cabin caved in from snow. My mom just couldn't face another thing but the spine didn't care.

Karen

[flowerpower]

Hi Carmell and Karen,

Yes, we are definitely walking a tightrope here on when to do surgery. Karen, it's funny what you said about your mother wanting you to "have a summer" before surgery. That was exactly what my husband said. At the March appt. dr. basically said: w/at least 2 more years of growing left, curves will continue to progress, I recommend surgery. He gave us option of waiting til curves reached into 50's. I was almost for having surgery this summer to maximize recovery time w/out missing too much school but oh well, I know mentally we would not have been prepared. All I can do is continue to pray that things will fall into place at the right time as they seem to be doing now......

Carmell, I have read many of your posts yet I didn't realize that Braydon had his first surgery at 11 months! It's hard enough to imagine my teen(baby) going through this, but a baby baby!!

I guess we all have our share of trials, tribulations and tragedies, don't we?

[Carmell]

Hi Renee,

<<Carmell, I have read many of your posts yet I didn't realize that Braydon had his first surgery at 11 months! It's hard enough to imagine my teen(baby) going through this, but a baby baby!!>>

I know exactly what you mean! I have my little set of "issues" here, and I wouldn't trade them with anyone! This is my little corner of the world, and most days I think I have a pretty good handle on things. If I had to deal with issues that are outside my comfort zone, I'd be a worse basketcase than I already am. I would have a hard time dealing with the emotional part and that would effect the decisions that are made. I think we'd all like to keep our problems, trials and tribulations - changing with someone else wouldn't be fun at all (usually).

Yes, Braydon had anterior/posterior fusion surgery at 11 months old. The fusion worked and his spine is very rigid in that area (T5-L1). His congenital curve measures about 65 degrees. He has very little vertical growth because of the fusion. I know his is an extreme example, but, I worry about kids who are not even close to being skeletally mature having fusion surgery. Braydon's spine above and below the fusion began twisting and curving. The worst part was that his neck and pelvis were no longer well-aligned. Thankfully he was able to have VEPTR implants done to give his body better balance, open his right lung to function better, level his hips, etc. His trunk is about 4 inches shorter than it should be, and no one knows how much more out of proportion it will be once he's finally grown. He is only 10yrs old now, and only time will tell if his adolescent growth will make any difference.

Continued best wishes to you and your decision making stress. I know you'll do what is best for your son. Good luck with everything.

[flowerpower]

Hi Carmell,

I want to wish you and Braydon all the best also. May God give our families strength to endure whatever we must. Just to let you know, I have gone ahead and scheduled Joseph's surgery-Dec. 19th at 8:00 a.m. Far enough away to (hopefully) prepare, yet I know it will come all too soon. Will keep you posted. I feel very lucky I happened to meet someone last week (on this forum) who had their surgery done by our dr. about 10 years ago, and she said she will be more than happy to speak with us about her experience. I have also requested to speak with others who have had surgery by our dr. more recently, and they will put us in touch with others. Will post more later - take care -

Renee

[starchild_81212]

i would say do it during the summer...better to lose the summer than to miss all that school well we did mine 1 week before school got out and im pretty much normal so it wouldnt really be the a whole loss just thought id put in my ten cents worth lol

[flowerpower]

Hi Shannon,

Well, here's the thing. His top curve has increased 11 degrees since last September and he's growing like a weed (last summer shoe size 9 this summer 12 and at least 2 years left of growing to do!). I'm afraid if we wait until next summer his curve will increase beyond 60 deg. and I'm definitely not comfortable with that. His school winter break will start 12/16, so at least he will finish out the trimester and have a couple of days to relax before surgery. School starts up again 1/3/06 and the school will provide a tutor to come 1 hr. a day to assist and transport schoolwork during recovery. I found out the high school schedule is different from middle and elem. and they do not get an extended spring break, turns out its only one week, so the date I chose works out best, time wise. In hindsight, the very beginning of this summer would have been the best time; he would have had 6 weeks. But there was no rush and I wanted him to have one last "regular" summer before his life is impacted. I have no regrets about that.

Thanks for putting in your "ten cents" I enjoy seeing different perspectives. It helps me to think about things from different angles.

Renee

[Carmell]

Hi Renee,

Good luck with surgery in December (please remind us, I know I'll forget by then - LOL). It sounds like you are putting this together and fitting the right pieces into the right place. Good work. Maybe you'll celebrate the holidays early so he'll get to participate with everyone. It will also give your family something fun to look forward to (regardless of the holiday you celebrate). Take care and keep up the good work!

[samantha_lynn]

Hi Renee:

I had my spinal fusion on May 24th, my curve was at 54 degrees. It has been 8 weeks and I feel completely normal; can do basically everything I did before (except play in a soccer game, which I hope to within the next 3 weeks) the build up and anticipation of the surgery is the most difficult part. I feel that I could have gone back to school within 2.5-3 weeks-the toughest thing was finding a comfortable place to sit (by the way, I am 16). My doc was great-he really encouraged me to get up and get moving, I walked 12 hours after my surgery and pretty much haven't stopped!! I am completely straight-great posture, about 13/4 inches taller and about 12 pounds lighter ( you kind of loose your appetite for a while). Good luck with your son. Looking back, it was definately the right thing to do. My rib hump is gone and for the first time as long as I can remember, my ribs are even!!

SAM