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

[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).

[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.