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View Full Version : Help DS 14yr NEWLY diagnosed and Dr. recommends surgery!



tampamom
02-24-2013, 08:50 AM
This is my first post, while I've been reading for days now. I've been hesitant to post.

My son is 14, 9months and at his first XRAY/Dr appt. last week his scoliosis curves are T55, L42, riser 4. The doctors says he has a very flat spine so it was hard to see initally, that it has probably been there for awhile. The doctor recommends Surgery!!!! This was our first visit to a specialist, he was only first diagnosed 7 months ago by his pediatrician at a routine checkup saying he was between 10-20 and to come back in 6 months. I did notice it get worse so I went ahead and scheduled the specialist before seeing the pediatrician again. Took 6 weeks to get that appointment. We were clearly expecting to hear bracing and try some heavy PT.

Getting an MRI next and found something about standup MRI. I am wondering if that would give a better picture than a traditional MRI? Also found information on EOS imaging but I haven't been able to find a machine in the southeast. Five hospitals in the USA now have it.

After an MRI we will get a second opinion..... But I strongly feel if his curve measurements are accurate: T55, L42 then every Dr. out there will follow statics and say he needs surgery.

Fortunately, my son is okay with the thought of rods. The day he found out he said "mom I don't want to rush it, but I don't want to put it off either". He is willing to try everything possible for the next 6 months or so, but He doesn't want to be in his 30's feeling the pain and regretting not doing surgery. To my surprise he did do some research and saw where large curves tend to keep progressing 1-2* per year in adulthood. Given that, he thinks surgery seems to offer the best case for his future.

I did speak with a local PT doing the Scroth Method but that is more for people under 40* and of course I hear from friends who say go to a Chiro. We've never been a family that uses chiropractic care and again would be more open if his curve wasn't so large.

Right now, it is hard for me to support surgery when he is pain free! In a way it would have be an easier decision had he be living in a brace with pain and curve progressing. At times I think we should wait until he needs relief but then I am truly worried his curve is moving fast and we miss a window to get the best results. The doctor said he was riser 4, but I've read that boys don't always fit the growth pattern of girls. As if the riser measurement may show 4 but they can hit a growth spurt later. My husband says he did continue to grow in college. He is 6'1 and my son is 5'5" now. He had two growth spurt in the last 12/14 months, gaining 4 inches total. But it looks like some of that was in his knees since they have horriable stretch marks!

I'd really like to see where he is in 3 months. Is it awful to get another Xray then, he's only had one?

Since we haven't been thinking surgery, I had no questions prepared for the Dr. and now I'd like to know how the rods have improved. Are they several choices? How do they feel after 10-15 years? Of course those patients may have different instruments. Although I am scared to ask, what are the down side to rods long term. It seems like some people end up having multiple surgeries, even later as adutls. Maybe those are people who only had 1 curve fused initially. He would be fused from T5-L4. I am only finding the good testimonies online. I sent my son this link with awesome testimonies http://www.iscoliosis.com/patient.html

I am awaiting this book next week, "Scoliosis Surgery: The Definitive Patient's Reference (3rd Edition)." Hopefully it will give me hope and insight in how to proceed.

Overwhelmed, sad and confused..

Pooka1
02-24-2013, 12:10 PM
Hi there. I see you and your son got thrown in the deep end. While that is very shocking, there is a silver lining. My one daughter's curve moved so fast that she was diagnosed in Sept and operated on the following March. This entire episode was very short for her and she said she rarely thinks about it any more, maybe because it was so short. Her twin wore a brace for a year and still needed surgery so that dragged out for a long time it seemed. The first kid had a better deal in my opinion.

Does you son have any other stretch marks, perhaps across the lower back? That could indicate that scoliosis might be associated with a connective tissue disorder. Also if he really progressed from 10-20 degrees to 55* in seven months, that is a very fast rate and reminds me of my one daughter whose curve moved 5* a month for the entire observation period. Both her and her twin have some mild unknown connective tissue disorder. They are monitored for emergent Marfans though.

I am no expert but did an experienced pediatric orthopedic surgeon measure the Risser 4? That sounds very high but of course I am not very familiar with boys' Rissers.

You say the fusion would include the lower curve. Did they determine that the lower curve is structural? The only way I have heard that can be determined is with bending x-rays. There is definitely evidence that if it isn't structural, you probably don't have to have that fused although I understand some surgeons will fuse it anyway. I would NOT be using such a surgeon. I don't care who he is because there are experienced guys out there who do not think even a large non-structural curve needs to be fused. My one daughter had a very large non-structural lumber curve under a large thoracic curve and it decreased on its own after the T curve was fused. Her identical twin had a pure T curve and the lumbar straightened completely on its own after the T curve was fused. I am not a surgeon but I would be GRILLING the surgeon on this point. The reason it is important is if you go to L4, there is a good chance that will have to be extended to the pelvis at some point. If you can avoid that then you should avoid that.

Good luck. You can do this.

tampamom
02-24-2013, 12:49 PM
Thank you so much for responding! I really appreicate your opinion, this is such a learning curve for us. I was wondering why older patients were getting more surgerys later in life, to fuse the bottom part! Can a curve still move after surgery?

He did not do a Xray of him bedning. I don't know if his lower curve is structural, if not it is called compensatory right, and might work itself out? The Dr. didn't really go into a lot of details. He did not even put the Cobb numbers/ angels on the Xray! I was in such a daze with no questions perpared either. I feel like a need another appointment. We are going to get a second opinion after we do an MRI and I read that book I ordered.

Yes, I remember reading your twins experience and thought my son can benifit from the short diagnosis to treatment period also. You sure have a unigue situation, tons of experience with this disease unfortunately. I was so encouraged to read her surgery was a sucess and the other twin is taking the same path. What a confirmation. When is her surgery?

I am thinking to up his excersie schedule in prep for surgery. I want to build up his muscle tone and flexibility as best we can. Good idea?

Thanks!

-C
Mom to 14yr son diagnosed 2/21/2013
T55, L42

LindaRacine
02-24-2013, 12:53 PM
Hi Tampamom...

Welcome to the forums.

You've already done an amazing amount of research. I have no doubt that you and your son will be as informed as you can be when you have to make the final decision. My only recommendation would be to get another opinion. You might want to check out Geoffrey Cronen. He did a fellowship at Washington University, where Keith Bridwell and Larry Lenke operate. They are widely considered 2 of the best surgeons in the U.S.

Good luck with your journey.

Regards,
Linda

tampamom
02-24-2013, 12:54 PM
oh and no stretch marks on his back.

Pooka1
02-24-2013, 01:14 PM
Thank you so much for responding! I really appreicate your opinion, this is such a learning curve for us. I was wondering why older patients were getting more surgerys later in life, to fuse the bottom part! Can a curve still move after surgery?

As far as I can tell, and this would need to be run by a surgeon, the people who get their fusions extended fall into a few categories:
1. Had two structural curves and the surgeon only fused the top one or he only fused the top one and part of lower one. Surgeons seem loath to fuse past L3 in a young kid even though it might mean another surgery later in life. They want them to have the flexibility for more years. Kids do get fusions to L4 and such but some surgeons like Dr. Hey will stand on their head and do osteotomies so that they can stay above about L3. The stakes are very high because it could mean the difference between only needing one surgery your entire life and needs a second surgery that goes to the pelvis.

2. a collapsed compensatory lumbar under an unfused T curve. This is the danger of not fusing a T curve because apparently it can involve the lumbar if you wait too long.


He did not do a Xray of him bedning. I don't know if his lower curve is structural, if not it is called compensatory right, and might work itself out?

I would NEVER let a surgeon fuse my kid's lumbar until he proved six ways to Sunday that it was structural. The only way to do that is with a bending x-ray to my knowledge. Compensatory curves tend to correct themselves to match whatever the T curve was fused at. So my one daughter was hyper-corrected in the T portion and her lumbar spontaneously hyper-corrected also. My other daughter had a false double curve pattern and so he only corrected her to about 25* on top and the lumbar then corrected to match on its own. Both kids are fused T4-L1.


The Dr. didn't really go into a lot of details. He did not even put the Cobb numbers/ angels on the Xray! I was in such a daze with no questions perpared either. I feel like a need another appointment. We are going to get a second opinion after we do an MRI and I read that book I ordered.

You need a second opinion in my opinion.


Yes, I remember reading your twins experience and thought my son can benifit from the short diagnosis to treatment period also. You sure have a unigue situation, tons of experience with this disease unfortunately. I was so encouraged to read her surgery was a sucess and the other twin is taking the same path. What a confirmation. When is her surgery?

They are both fused. One in 2008 and the other in 2009. Scoliosis is not an issue in our family life any more and hasn't been for years. Because their fusions end at L1, they are not expected to need any more back surgery in their life and the research bears that out so far.


I am thinking to up his excersie schedule in prep for surgery. I want to build up his muscle tone and flexibility as best we can. Good idea?

It can't hurt. I think just his youth is enough. My kids are not sporty and did no exercise and they were still back at school full time between 3-4 weeks post-op.


Thanks!

You're welcome. You are doing a good job.

Sharon

Pooka1
02-24-2013, 01:23 PM
There is something called tethering which is non-fusion surgery. Your son might be a candidate though he would have to have growth left and not be much more than 55*. He is not yet 15 and so might qualify. You would have to move fast. The Philly Shriners is the place to get the info. Newton in San Diego also does tethering.

titaniumed
02-24-2013, 03:46 PM
He did not do a Xray of him bedning. I don't know if his lower curve is structural, if not it is called compensatory right, and might work itself out? The Dr. didn't really go into a lot of details. He did not even put the Cobb numbers/ angels on the Xray! I was in such a daze with no questions perpared either. I feel like a need another appointment. We are going to get a second opinion after we do an MRI and I read that book I ordered.



This is probably a good way to start off....These surgeons know that patients and especially parents, are completely overwhelmed and in the shock phase upon diagnosis. Why shoot benders when a decision is up in the air? I agree. Now its time to learn more about scoliosis.....the ball is in your court, you will go back with more understanding.

You have learned quite a bit in a short time, congratulations! I think that your on the right course with what you have planned, get a second opinion, and keep reading and posting. Keep asking questions.

I have not seen a 15yr old male case with basically the same curves as me here in the 5 years Iíve been posting....This brings back memories of the 70ís.......the twilight zone. Bell bottoms, The Brady bunch, and Harrington rods. This is when I learned to breathe and breathe deep! Things are much better now, the Brady bunch is gone, and surgical technology has progressed leaps and bounds. (smiley face)

Do you have x-rays you can post?

On this subject matter, I have had a few x-rays through the years and have had them lost by surgeons that retire. If you have any diagnostics done, get copies burned to disc for your possession....They are your property, you paid for them.

Iím so sorry about this diagnosis.....your son is a scoli. Now is the time to accept what has happened, get through the shock phase, and be strong. Scoliosis happens to many people and its no-ones fault, especially yours and there is no blame. Try not to worry too much about what will happen.... Many of us have had to forge ahead through life wondering what was going to happen and it all comes out good in the end.

Keep smiling.....None of these books will teach you this, and its really important!

Ed

Pooka1
02-24-2013, 05:21 PM
Why shoot benders when a decision is up in the air?

Ti Ed, correct me if I'm wrong but the decision is he needs surgery. It is not up in the air. A 14 yo boy with demonstrated progression who is at T55* sounds like it falls within most surgical indicator criteria I have seen. As I understand it, a HUGE question remaining is does he need fusion to L4 or can it stop higher? That can only be answered by bending films and interpretation by a surgeon or two to my knowledge.

If it is determined that the lumbar is compensatory then if it were my kid I would get the earliest possible date to fuse the thorax so that the lumbar doesn't get any crazy ideas about becoming structural.

If the lumbar is structural then if it were my kid, I would be consulting with Dr. Hey or someone about what he can do to keep the fusion above L3 or so. Not as much of an emergency as the first case in my opinion but still wouldn't benefit from lolly-gagging.

I want to state emphatically that I am NOT a surgeon and have NO surgical training. There is a very real chance I am wrong about some of this stuff because I have no training and because I have only managed two cases (The Borg). I am just stating my course of action and the alacrity I would bring to the task if it was me dealing with this situation. For what it's worth.

tkare
02-24-2013, 08:21 PM
Our stories sound very similar, when my son was first diagnosed we were not at all expecting to hear he needed surgery. We have learned a lot about scoliosis in the past few months. My best advice is to get a second opinion, I found that with our second opinion we came in better prepared to ask questions since we already knew we were at surgical range an did a lot of research before seeing the second doc. The book you ordered is a great start with a lot of great information. Good luck with everything.

tampamom
02-24-2013, 09:29 PM
Thank you everyone who has responded to this thread, it means a lot.

Ed, It certainly helps to hear your experience and understanding. Your encouragement is greatly appreciated. I am trying to stay positive. I have attached his Xrays also.

I haven't decided who see for a second option, probably Cohen or maybe Moreno, but will get that schedule soon.

Thank you Pook1, for you bending Xray suggestion and perspective on prioritizing decisions. I suppose I can get this second doctor to take a bending XRAY. Unless maybe the MRI will help with determining if the Lumbar curve is structural, and go over it with him now that I am informed.

We are in the process of formulated a local support group for moms here in Hillsborough/Pinellas county, Yay!

Pooka1
02-24-2013, 09:41 PM
I suppose I can get this second doctor to take a bending XRAY.

I guess I would not go into that second opinion and ask for a bending film. :-) That sounds like you are trying to do the surgeon's job.

Rather, I would ask the second surgeon if he can explain to you why the first surgeon would suggest fusing so far into the lumbar when he didn't take bending films to determine whether the lumbar is structural or compensatory. Be prepared for the answer to be that some surgeons will fuse a compensatory lumbar under a large structural. (Those would not be MY surgeons my the way.) If that is the response, my next questions would be:

1. Why do some surgeons NOT fuse compensatory lumbars under large structural T curves?

2. What do the studies show about this issue?

Deep breaths. You are hanging in there I know. I am just alarmed at a surgeon telling you he would fuse to L4 without doing bending films. He may have determined the lumbar was structural or maybe he just fuses all lumbars under large T curves. Who knows.

titaniumed
02-24-2013, 11:13 PM
Sharon, usually the first visit is the feeling out visit.....I wonder what percentage of 1st visits result in a surgery? After all, many people need time to think, and possibly get that 2nd opinion. Besides, there are insurance hurdles that need to happen....Unless your insurance is golden like mine was, you get the benders right off the bat. Funny how that works.....Many also chicken out, been there done that.

I can see by the x-rays that he has quite a flat back lacking lordosis and kyphosis....otherwise the scoliosis really doesnít look all that bad....way better than Elias, and he came out pretty darn straight.....I have no idea how low they would have to go, its just best to wait and see. My guess is that the 1st surgeon wants to go to L4 due to the lack of lordosis issue....this being the deciding factor in his length of construct. It almost seems like the scoliosis correction would be secondary and that balancing out his sagittal curves will be of more concern. This would also explain why no benders were needed. Just a guess.

I would go and visit another surgeon and donít say anything at all. Do not influence his decision one bit, and see what he says. There is no emergency here, but he sure does look like a surgical candidate. These hefty T curves in time can accelerate progression in lumbar curves....

They actually rebuild the lordotic and kyphotic shape of the spine in surgery with the help of the Jackson surgical tables. Its actually an art doing this and these ďsideĒ or ďsagittalĒ curves need to be balanced. They go hand in hand....and also go hand in hand with the scoliosis correction. Plumb lines need to be established so there is no leaning in any direction when standing.

Ed

Pooka1
02-25-2013, 05:46 AM
I can see by the x-rays that he has quite a flat back lacking lordosis and kyphosis....otherwise the scoliosis really doesnít look all that bad....way better than Elias, and he came out pretty darn straight.....I have no idea how low they would have to go, its just best to wait and see. My guess is that the 1st surgeon wants to go to L4 due to the lack of lordosis issue....this being the deciding factor in his length of construct. It almost seems like the scoliosis correction would be secondary and that balancing out his sagittal curves will be of more concern. This would also explain why no benders were needed. Just a guess.

That sounds possible. You could be right. But then the surgeon should have said the child has hypo-lordosis that needs fixing also, not just scoliosis. All I know is there are surgeons who lower the surgery trigger angle on TL curves for hte express purpose of saving lumbar levels. And there is Dr. Hey who will stand on his head and do complex osteotomies and such just to be able to stay up higher on young folks. I'm just reasoning from there.


I would go and visit another surgeon and donít say anything at all. Do not influence his decision one bit, and see what he says.

I agree with this also. But after the surgeon gives the prognosis and if he suggests a fusion into the lumbar, unless he makes some noises about the hypo-lordosis or calls for bending films, I would ask the question about figuring out what is going on with the lumbar. I was shocked to learn there are surgeons who will fuse both curves in a false double. Two-Of-Two had a false double and apparently we dodged a huge bullet unknowingly when he only fused the T curve. I didn't know about this issue at the time and would have ignorantly okayed a longer fusion that would have put her in a countdown. The study I saw on this issue showed ALL the lumbars are stable at least two decades out if only fusing the T curve in these cases. There should be nobody still fusing the lumbar absent other reasons as far as I can tell which might not be very far!

mariaf
02-25-2013, 08:41 AM
There is something called tethering which is non-fusion surgery. Your son might be a candidate though he would have to have growth left and not be much more than 55*. He is not yet 15 and so might qualify. You would have to move fast. The Philly Shriners is the place to get the info. Newton in San Diego also does tethering.

Funny thing, Sharon - I just logged on here to post something about tethering because I remembered a question arising on another thread about the absolute cutoff and wanted to share this recent post by a mom on the VBS site:

"More on tethering requirements, if it helps anyone. Although 55 degrees seems to be a published cutoff, Erin was tethered at 63 degrees thoracic (as was another patient we saw at the hospital, so she was not an exception.) Pre-op, her lumbar was 36 but bent straight.

At the three month xray, her thracic was about 24 down to 10*rotation, and lumbar had corrected to 18 so far- no measured rotation. I do think that I see the rotation creeping down over the last few weeks... I believe it will also help now that she is out of the brace and can mobilize- bend and twist, as well as strengthen her core again."

My only concern in the case of tampamom's son would be whether or not there's enough growth remaining for tethering to be successful. Certainly worth running it by a surgeon, though. As mentioned above, Dr. Peter Newton in CA does tethering, as well as several docs on the staff of Shriners Hospital in Philadelphia. Janet Cerrone (see contact info in my signature) would be the person to contact in Philadelphia - she might even be able to have the docs review the case electronically and let you know whether or not a consult in Philly would be worthwhile.

tampamom
02-25-2013, 08:17 PM
Thanks for the information on large curves and tethering. I will contact Shriners in Philly about Tethering hopefully they can give an initial opinion based on his XRAY's. The more I read about fusing down in the Lumbar the more I am concerned about lower back pain.

As far as growing and Risser score, I read that facial hair and voice change are good indications of maturity in boys also. And that boys tend to keep growing as they are older, more so than girls. This is all statistically, so what happens if you tether and don't continue to grow much really, no more than 1 or 2 inches, does the curve just hold and not straighten? Why to do you need to still grow for it to work?

Thank you all for sharing.

Pooka1
02-25-2013, 08:42 PM
Thanks for the information on large curves and tethering. I will contact Shriners in Philly about Tethering hopefully they can give an initial opinion based on his XRAY's. The more I read about fusing down in the Lumbar the more I am concerned about lower back pain.

The problem is the lower discs wear out under long fusions. That is probably causing the pain.


As far as growing and Risser score, I read that facial hair and voice change are good indications of maturity in boys also. And that boys tend to keep growing as they are older, more so than girls. This is all statistically, so what happens if you tether and don't continue to grow much really, no more than 1 or 2 inches, does the curve just hold and not straighten? Why to do you need to still grow for it to work?

Thank you all for sharing.

Apparently, just tethering or stapling doesn't work absent remaining growth. That's why they fuse adults and don't tether or staple them. Tethering or stapling arrests the side of the vertebra that is growing too fast (the front) and so use the remaining growth on the back to straighten by evening out the growth. That's why they won't tether or staple any child who does not have enough growth remaining. They will tether very large curves if there is a large amount of growth remaining apparently. These non-fusion surgical approaches are the main hope of avoiding fusion in kids and I really hope they pan out, especially for the TL and L curves which are a very raw deal.

tampamom
02-25-2013, 09:38 PM
As far as tethering, unfortunately my son is 5'5" and almost 15. He grew 1 1/2 inches in the past 7 months. He has always been in the 10 percentile for height as a child. His pediatrician even did a bone density test when he was 4 because he hadn't grown one year. So I've always been waiting for him to start growing!

I never knew the unbalanced growing in Scoli was from front to back. I assumed it was one side growing differently.

Will ask Shriners, but I am thinking he is too borderline. Had we only known about his spine sooner..... :(

Pooka1
02-26-2013, 05:43 AM
As far as tethering, unfortunately my son is 5'5" and almost 15. He grew 1 1/2 inches in the past 7 months. He has always been in the 10 percentile for height as a child. His pediatrician even did a bone density test when he was 4 because he hadn't grown one year. So I've always been waiting for him to start growing!

I never knew the unbalanced growing in Scoli was from front to back. I assumed it was one side growing differently.

Will ask Shriners, but I am thinking he is too borderline. Had we only known about his spine sooner..... :(

The spine curves as the only possible reaction to the anterior overgrowth in a space-filling way...emphasis added


We undertook a comparative study of magnetic resonance imaging (MRI) vertebral morphometry of thoracic vertebrae of girls with adolescent idiopathic thoracic scoliosis (AIS) and age and gender-matched normal subjects, in order to investigate abnormal differential growth of the anterior and posterior elements of the thoracic vertebrae in patients with scoliosis. Previous studies have suggested that disproportionate growth of the anterior and posterior columns may contribute to the development of AIS.

http://www.ncbi.nlm.nih.gov/pubmed/14516040

All idiopathic scoliosis cases are due to anterior overgrowth to my knowledge.