14 year old son, trying to find solution without surgery

[djjane]

My son's scoliosis measures about 50 degree now. It was 20 degree two year ago. We've been seeing doctor every 3 or 6 month. Now the doctor said only surgery can fix it.

We've been doing swimming, exercises... and we tried PT and other things before. I am hoping to get some advise on what can we try to work on his situation. We really don't want to do the surgery. He's 14 years old, very skinny.

We live in southern California, are there doctors out there trying alternative approaches?

djjane

[hdugger]

I'm highly supportive of exercise for scoliosis, and believe it can do a great deal of good.

But . . . 30 degrees in two years is a huge progression, and, at 14, your son is likely still growing and will likely continue to curve. I'd be very surprised if you could find a doctor, at this point, who did not strongly recommend surgery.

Even the specialists in exercise for scoliosis do not believe that it can stop a curve during a peak growth spurt. And bracing is not effective with a curve as large as 50 degrees. I hate to discourage you, and I absolutely understand the impulse to try to find something else, but nothing I've read leads me to be believe that anything other then surgery is going to be able to stop his curve from progressing at this point.

The good news is that surgery is not the end of the world for these kids. They generally come through with flying colors and never look back.

Best of luck during this difficult time.

[Pooka1]

Where is the curve? If the lumbar it is less likely to progress than a thoracic curve. And you probably want to delay as much as possible fusing the lumbar anyway.

That said, perhaps any 50* curve in a 14 yo boy is likely to continue progressing, I don't know. We do have a very few folks here on the forum who made it to 50* prior to skeletal maturity and then just hung there, sometimes for decades. But that seems rare.

The surgeon will go through with you the balancing act of allowing more growth but not letting the curve get too large. PT can't hurt but there is no evidence it can help in cases like your son's unfortunately. That doesn't mean it can't. And I think bracing a 50* is clearly unethical as far as I know.

Good luck.

[braceyourself]

I agree that most doctors will talk surgery at 50 degrees. It's a really tough decision of whether to have surgery or not, and I'm sorry you're having to make that decision. I have a blog and video about my experience with scoliosis, bracing, and surgery, and I think it would help you. It includes information about a lot of things that I wish I would have known going through it all. But like many others on this site, I'm so thankful I had my surgery. Everyone is different, but I know that I had to come to the point where I was thinking about my future health, and what would happen if I didn't have surgery. Anyway, I hope you'll check out my blog if you get a chance. The link is in my signature. And I hope you get some answers for your son, and that he's doing well!

[djjane]

Thank you all for the replies and support. The curve is from T8 to L3.

I've watched the youtube of Katie. You are an inspiration.

My son does not have any pain of discomfort in his back. That's one of the reasons for us to be kind of undecided.

[Pooka1]

The curve is from T8 to L3.

Here is what I would do were it me...

1. Find out where the fusion would end if you have it done immediately.

2. Ask your surgeon what are the long-term ramifications of being able to stop the fusion at L3 versus having to go lower.

I can tell you there are testimonials on this group about surgeons who fused curves less than the trigger angle of 50* in skeletally immature kids SOLELY to save having to go lower into the lumbar. Ask your surgeon about why this is important.

Good luck.

[AMom]

My son's scoliosis measures about 50 degree now. It was 20 degree two year ago. We've been seeing doctor every 3 or 6 month. Now the doctor said only surgery can fix it.

We've been doing swimming, exercises... and we tried PT and other things before. I am hoping to get some advise on what can we try to work on his situation. We really don't want to do the surgery. He's 14 years old, very skinny.

We live in southern California, are there doctors out there trying alternative approaches?

djjane

djjane,

After I answered your question on my thread, I went looking to see if you were elsewhere on this site. I am sorry to say, they did not get good results on 40+ degree curves using the PT you were asking about. The folks who have already answered here are more knowledgeable than me, so I will step back and let them do what they do so well.

A Mom

[Pooka1]

djjane,

By the way, here is a blog maintained by an SRS surgeon about some of his cases. He is one of the surgeons who will fuse earlier and at smaller Cobb angles in order to be able to have a shorter fusion and presumably not get into countdown territory.

http://drlloydhey.blogspot.com/

All further questions you might have should be addressed to your surgeon.

[mariaf]

djjane,

Welcome - You have gotten some very good advice so far.

While your son may ultimately need fusion surgery, and these kids do amazingly well, there is another procedure being performed by Dr. Peter Newton in San Diego called anterior spinal tethering which is a one-time, non-fusion surgical alternative that can be used for curves as large as 55 degrees. Tethering is sometimes suggested when a patient seeks a consult for VBS (vertebral body stapling) but is past the cutoff for VBS (35 degrees). Tethering is quite new, but so far the results have been good - I know of a few patients who have had tethering, including patients of Dr. Newton.

Just trying to provide info on all available options.

Best of luck and please keep us posted!

[Pooka1]

[...]there is another procedure being performed by Dr. Peter Newton in San Diego called anterior spinal tethering which is a one-time, non-fusion surgical alternative that can be used for curves as large as 55 degrees.

Oh hey Maria I didn't know the limit was 55*! That is great! Lots of kids who missed the VBS window may qualify for tethering.

I'll remember that and mention it in the future.

[mariaf]

Hey Sharon,

I just learned this (about 55 degrees being the upper limit) a few days ago from another parent - I guess it pays to ask questions!

I knew that a lot of kids with curves too large for VBS (generally over 35 degrees) could be tethering candidates, but I had not been aware what the cutoff number was.

[Pooka1]

That's really great to know. Do they tether all types of curves? This seems like more hope for the lumbar and TL curves which seem like such raw deals. I can't think about it too long before getting mad about how unfair life is.

[Pooka1]

And isn't Newton in SoCal where djjane is? She might want to get on that ASAP.

[mariaf]

Tethering seems to be used a lot for T/L curves in conjunction with staples - meaning that I have heard of a few cases where tethering was used in the thoracic area - and, depending on whether or not the doctors felt it was necessary - staples were used in the lumbar area. (In one case, the doctors felt the L curve would self correct if they did the tethering of the throacic curve. That child has not had the surgery yet but is scheduled soon).

Of course, tethering could be used in cases where the patient only has a thoracic curve.

I have not heard of it being used for lumbar-only curves.

In Philly, there was a girl a while back with a 40+ lumbar curve and they used staples plus a very small rod in that lumbar area that they adjusted a couple of times over maybe 18 months and eventually removed. The 'adjustments' were not like the lengthenings of a growing rod - the recoveries were much easier - she was out the same day and did extremely well. She is done growing and continues to do wonderfully almost a year after the rod was removed (for the removal I think she stayed over one night). So, I'm thinking the tethering is something they felt the need to come up with as a better alternative for a large T or T/L curve (just my guess).

Still a lot to learn as far as tethering (even for the docs I think) - tethering is very new but it seems equally as promising! Thankfully, there are a handful of doctors who are not satisfied unless they are constantly coming up with better options for these kids.

I'll see if I can get some more info on tethering but it may not be until it's been around a little longer :-)

[mariaf]

And isn't Newton in SoCal where djjane is? She might want to get on that ASAP.

Yup, San Diego. And he is supposed to be one of the best.

(They are also doing tethering in Philly, but since they are in CA, I mentioned Dr. Newton. As far as I know, right now those are the only two places to go for it. There could be other doctors performing tethering - I'm just not aware).

[hdugger]

My son does not have any pain of discomfort in his back. That's one of the reasons for us to be kind of undecided.

Kids don't normally have pain with scoliosis - it usually doesn't set it until they're adults.

One other thing I might recommend asking about is an MRI. Scoliosis in boys is rare (my son also has scoliosis), and it is more often associated with a congenital problem in the spine which an MRI can tease out. We'd seen three doctors (one of them a scoliosis specialist) before anyone recommended an MRI. It turned out that my son did have a congenital problem which noone had suspected before.

[LSKOCH5]

Djjane, welcome to the forum. So sorry about your son's diagnosis. As you can see in my signature, our world changed over the past several months & we are thrilled to be on the other side of the surgery w our 14 yo son and heading down the path to recovery. All you can do is to research, research, research. Definitely check out the tethering and other options. We felt in our situation that there was no alternative due to the degree of his curve and knowing that he still has another 4-5" of growth to go, his situation would only get worse (he grew 5" in the past year alone); the longer one waits for surgery it seems the more painful, tougher the surgery, and possibly less effective it is. You're also very fortunate that he's not in pain; it actually is true that many of the scoli kids have pain. Our son had significant pain over the past year, and his activities were very much curtailed over the 2-3 months before surgery. Physical therapy helped tremendously. Feel free to message me if you'd like; Katie had wonderful advice for us as well a few other bloggers, and searching the forum is just invaluable. Good luck.

[djjane]

Thank you so much, everybody. The shared information about tethering, VBS are very valuable. Yes, we did take MRI this month too. His doctor said MRI looks normal. But as you all suggested, we' be seeing more doctors.

We live in central Orange county, we used to go to Mission Viejo to see doctor. Next week we'll head to UCLA hospital to see doctor Scaduto. After that, we'll see PT and get more discussions.

[Pooka1]

Thank you so much, everybody. The shared information about tethering, VBS are very valuable. Yes, we did take MRI this month too. His doctor said MRI looks normal. But as you all suggested, we' be seeing more doctors.

We live in central Orange county, we used to go to Mission Viejo to see doctor. This Monday (2/13) we'll head to UCLA hospital to see doctor Scaduto. After that, we'll see PT and get more discussions.

If you are interested in tethering, you will likely have to deal directly with Newton (or Betz) I think.

[mariaf]

I believe that is correct, Sharon.

[Resilience]

djjane,

Welcome to the forum. I'm sure you'll find a lot of info and support here.

My daughter is a pt of Dr. Newton, mentioned above, so I wanted to just share: He is wonderful. He is truly a leader in the Scoli Field, is and has been part of many international research groups on Scoli, he speaks on the topic world wide, he often has international fellows with him to learn from him. Patients travel from all over the US and the world to see him. All this and he is patient and kind, makes my daughter and I feel as comfortable as possible (of course some visits have been better than others).

When my daughter was first diagnosed, I felt so helpless, so overwhelmed and sad. I had the goal to get her to the best specialists. I'm a nurse so I asked everyone I knew in medicine, near and far, who we should see, who'd they recommend? I was ready to travel to LA, but found I didn't need to. We have seen Dr. Betz in Philadelphia, with Dr. Newton's blessing. They are actually friends, both innovators in the field.

Tethering is something he's been researching and doing studies on for years. It is why he never embraced VBS. That's my only disappointment with him, actually.

Follow your instincts to do what's best for your son and Best Wishes to you both.

[ARodsMom]

This forum is amazing, you will find so many people who can give you the greatest advice who have been down that road you are traveling now. My son bounced back really quickly from his surgery, he was fused from T2-L2, my concern was the growing he had left to do (he's now 5'7"), but I also didn't want my son to continue to get worse. He's involved in sports and has been able to return full time to his competitive tournament baseball and is doing shot put this year at school with the track team. He also experienced No pain, but his breathing did start getting heavy the months before his surgery. We tried going to a chiropractor (in desperation to avoid surgery) and although it brought relief to his back, it of course did nothing to help his curve.

Good luck in your searching.

[mariaf]

My son bounced back really quickly from his surgery, he was fused from T2-L2, my concern was the growing he had left to do (he's now 5'7"), but I also didn't want my son to continue to get worse. He's involved in sports and has been able to return full time to his competitive tournament baseball and is doing shot put this year at school with the track team.

That is great news! I know how'competitive those baseball tournaments can be so it's great to hear he was able to return to doing what I'm sure he loves.

[djjane]

Some update. We've seen two doctors this week. Will go to see doctor next week.

One thing confused me is from his Xray, some doctor said it is at risser sign 0, and some said it is at risser sign 4 even on the august 2011 version. Have you guys found it hard to read risser sign?

We are also thinking to start the schroth exercise next week with PT.

[ARodsMom]

Sorry djjane, I have no clue what the risser is all about. I'm sure someone on the forum can help you with that.

mariaf, yes it's great that he still has baseball! But, he did pull a back muscle recently while in the cages taking a few swings. Hopefully it isn't an issue.

[Pooka1]

Some update. We've seen two doctors this week. Will go to see doctor Skaggs next week.

One thing confused me is from his Xray, some doctor said it is at risser sign 0, and some said it is at risser sign 4 even on the august 2011 version. Have you guys found it hard to read risser sign?

We are also thinking to start the schroth exercise next week with PT.

I would email both surgeons and ask them to look at the same radiograph. The Risser has to do with calcification along the iliac crest of the pelvis. I do not think it is possible for two experts to vary by 4 points so I am betting there is some confusion somewhere.

Last, someone correct me if I'm wrong but the 0 is almost certainly correct and the 4 is almost certainly wrong when discussing a 14 yo boy.

Check this out... this is consistent with the 0 figure being correct...

http://www0.sun.ac.za/ortho/webct-ortho/age/risser.html

[AMom]

I would email both surgeons and ask them to look at the same radiograph. The Risser has to do with calcification along the iliac crest of the pelvis. I do not think it is possible for two experts to vary by 4 points so I am betting there is some confusion somewhere.

Last, someone correct me if I'm wrong but the 0 is almost certainly correct and the 4 is almost certainly wrong when discussing a 14 yo boy.

Check this out... this is consistent with the 0 figure being correct...

http://www0.sun.ac.za/ortho/webct-ortho/age/risser.html

I have to agree, a 0 and a 4 are too far apart to be a simple variation, one of the two made an error. Maybe one of the guys stopped in the hall to discuss another case on the way to your room and mentioned the number from the other case? It is almost impossible to make it very far without being repeatedly assulted with one question after another. I too would ask a follow-up question so you know where you stand with regard to remaining growth.

Other than they finish their growth several years later than girls, I don't know much about boys, so I would guess he would be between 0 and 2.

I think another person here has done some reading on the subject--was that you Ballet Mom?

[hdugger]

The higher Risser signs are (I think) mostly associated with facial hair/voice changes in boys. If your son hasn't had a voice change and/or facial hair, it's likely he's at a lower Risser sign.

From googling, facial hair comes after peak growth velocity (and public hair before, in case you want to have a really intrusive discussion with your son :))

[laurieg6]

Regarding rissers, my son had surgery at age 12 and his risser was probably a 0 or a 1, and within the short range of "normal" size for his age. Then after he'd only grown an inch or two after his surgery, and was still not quite 5'1", we were told that his growth plates were almost completely closed and he probably wouldn't grow more; I'm pretty sure that at age 14, his risser was a 4 or a 5. Now at age 16 1/2, he has not grown at all since age 14 and he's still not quite 5'1". When his hand/wrist was x-rayed at age 15 for a possible visit with an endocrinologist, we were told that his bone age was already 17, despite the fact that he was only 15. So I think that any risser # is possible for any age kid, although I know that my son's situation is probably very unusual.

I hope you get the situation cleared up soon and can hopefully get on with finding alternatives to fusion surgery. I have to say though, that the surgery was so much better than the brace for my son. Although he is very short, he has a great attitude about it and doesn't let anything stop him from doing everything he wants to do.

[djjane]

Thank you Laurieg6 and others for the update. I don't think not growing much after 14 is abnormal. My son is 5'8'' and 14 and half years old. He's not going to complain either if not grow any more.

Laurieg6, in your signature you mentioned your son is still working on improving his posture. What exactly is that? Can you give me some advise? Every time when we visit doctors, they always said posture is not going to worsen your scoliosis though I don't like to hear that. I tried to ask my kid to sit straight, but he replied that the doctor said .... I guess I have to work hard.

[mariaf]

The higher Risser signs are (I think) mostly associated with facial hair/voice changes in boys. If your son hasn't had a voice change and/or facial hair, it's likely he's at a lower Risser sign.

From googling, facial hair comes after peak growth velocity (and public hair before, in case you want to have a really intrusive discussion with your son :))

So that would mean that if a boy's voice hasn't changed yet, and he hasn't gotten facial (or public) hair yet, then he's likely to still have considerable growth remaining? I'd say that makes sense and seems to hold true in most cases.

[djjane]

Some update from me. Went to see doctor Skaggs. His measurement is 41 degree. He would not recommend surgery right now. The risser sign is about 1 - 2 (though it is told by the intern, Skaggs seems very busy himself).

Keep doing the trunk rotation exercise. Stopped swimming.

Might try schroth method. But seems it is hard to get a real grasp of how to do it. Lots of breathing techniques.

[TAMZTOM]

Some update from me. Went to see doctor Skaggs. His measurement is 41 degree. He would not recommend surgery right now. The risser sign is about 1 - 2 (though it is told by the intern, Skaggs seems very busy himself).

Keep doing the trunk rotation exercise. Stopped swimming.

Might try schroth method. But seems it is hard to get a real grasp of how to do it. Lots of breathing techniques.

Hi djjane
Just to give you some input on alternatives...
My daughter, 10 yrs, discovered thoracic and lumbar curves each around 40 degrees last June. Been exercising ever since, Schroth daily. We were told in June that she needed surgery soon, offered us a September date for spinal fusion (even boasted about using the new grow rods). Suggested she should be as much as 50 - 55 degrees by xmas 2011.
We achieved correction with exercise alone (December 2011). She now also wears a SpineCor brace. Obviously has much growth to come, it'll be a constant fight, don't know if we'll win, but we're doing what is best for our daughter.
Regards to you and your son
Tom

[djjane]

Thank you Tom. I've been following your threads about exercise, diet, etc. It is very encouraging. I learned a great deal from it.
My problem is that my kid is not very strong physically. He's learning the Schroth slowly with a chiropractor. Especially the breathing technique, seems like hard to do it during his "tea pot" position.

[Pooka1]

Do you think you might consider the tethering?

If so, it would be a great thing if you posted your testimonial here. We don't have any on tethering.

[TAMZTOM]

Thank you Tom. I've been following your threads about exercise, diet, etc. It is very encouraging. I learned a great deal from it.
My problem is that my kid is not very strong physically. He's learning the Schroth slowly with a chiropractor. Especially the breathing technique, seems like hard to do it during his "tea pot" position.

Hi DJ
Don't be too concerned about your kid's physical strength. I may have given the wrong impression, on the thread about Tamzin, that this sort of physical aptitude and strength is required. It categorically is not. In fact, there are indications that Tamzin's chemical and muscular 'peculiarities' are indicative of some deeper (neurological/chemical) issues. (E.g., see Kevin_McI comment about energy during exercise being diverted away from growth hormones, etc., although this was his "hypo of a hypo", not a conclusion. See later notes from "the long article" fleshing out KMCI's HofH.).
The Schroth breathing techniques are very beneficial; these alone WILL improve your kid's overall health, etc. I say this categorically as I have two other kids who don't have scoliosis and I KNOW that Schroth breathing (done symmetrically in their case) is beneficial for them. For Tamzin, we've seen "remarkable" (quote from two spine surgeons, an orthotist and a paediatrician) development of her concave side thoracic ribs attributable to Schroth RAB (rotational angular breathing).
Nothing is a cure all for scoliosis. I don't tout Schroth as being it. I don't tout a SpineCor brace as being it. These two are part of our endeavours to treat it.

I KNOW that we're doing a better job of "it" than the medical authorities, private and UK health system.

PM me ANY questions you want and I'll try to help as best I can. (E.g., "tea pot" was confusing to us too, at first.)

[mariaf]

Do you think you might consider the tethering?

If so, it would be a great thing if you posted your testimonial here. We don't have any on tethering.

Sharon,

Thanks for mentioning tethering. We are going to hear a lot more about it in the coming years I"m sure.

I just wanted to share that we have several parents on the VBS site with experience with tethering. One girl is headed back to CT from Philly today after tethering about a week ago and mom is thrilled as can be so far. We also have several other parents whose kids had tethering (either in Philly or with Dr. Newton in CA) and would be more than willing to share about their experiences.

If anyone is considering tethering and would like to be put in contact with these parents, please let me know.

We would also welcome anyone considering tethering to join the VBS site as well. Don't be fooled by the name www.vertebralstapling.com - while this site was started to share information and experience regarding VBS (because there was so little info out there at the time), we state right on our home page that the site is for anyone dealing with the diagnosis of scoliosis in their child.

[Pooka1]

Sharon,

Thanks for mentioning tethering. We are going to hear a lot more about it in the coming years I"m sure.

I just wanted to share that we have several parents on the VBS site with experience with tethering. One girl is headed back to CT from Philly today after tethering about a week ago and mom is thrilled as can be so far. We also have several other parents whose kids had tethering (either in Philly or with Dr. Newton in CA) and would be more than willing to share about their experiences.

If anyone is considering tethering and would like to be put in contact with these parents, please let me know.

We would also welcome anyone considering tethering to join the VBS site as well. Don't be fooled by the name www.vertebralstapling.com - while this site was started to share information and experience regarding VBS (because there was so little info out there at the time), we state right on our home page that the site is for anyone dealing with the diagnosis of scoliosis in their child.

Oh very good!

The VBS site will morph into a place where all these innovative treatments can be discussed by parents. A one-stop shopping for cutting edge treatments!

It's great that tethering can be done for kids who are out of the VBS range. And I am not surprised to hear you mention they are using them a lot on T/L curves (not sure if you mean TL or double majors there but it applies to both). Any curve involving the lumbar is high stakes requiring close and immediate scrutiny in my opinion. These treatment modalities need to directly address the issue of avoiding fusing deep into the lumbar. When you have surgeons fusing TL curves at what is lower than the commonly accepted surgery trigger angle, that is a clarion call that hoping to saving levels rises above the level of having surgery itself. I am coming to think it is unethical not to fuse these curves at smaller angles given when is known about the countdown issue. I wish surgeons would directly address this more often. The OP's case of T8 - L3 is extremely alarming to me. L3 appears to be a critical level to avoid going below. I would be physically standing on desks at this point were it me.