Newly Diagnosed - First post - 13 year old girl with AIS

[saminD]

HI all,

We found out about my 13 1/2 year old daughter's AIS scoliosis last month with an S curve (38 degrees right thoracic and 49 degrees thoracolumber per the official X-ray report though surgeons gave slight variations of this measurement still within 5 deg error range). The doctor said her Risser sign 0 as she just started her Menarche at the end of September and so we are afraid the curve progression would get worse.
We met with 3 Ortho surgeons and all are of the opinion that she is close to surgery range (above 50 degrees) though 2 suggested trying Boston brace, which is coming soon.

I want to try all possible non-surgical options before we consider surgery.
We met with PT where they had Medx TR equipment and I gave her the Dr. Mooney research paper to review (along with Dingo’s list of exercise he uses with his kid) and suggest a good routine to try for us. As my kid does not have any pain right now, she was having hard time justifying a routine due to insurance reasons. She is reviewing and will get back to us. I am having trouble finding an expert in this area who could guide us to ensure we do the exercises properly and not cause harm. Any help from forum experts is appreciated here.

We also met with Schroth trained PT and starting few sessions starting next week.

We met with a Yoga teacher who trained with Elise Miller (Yoga for Scoliosis DVD) and she gave some initial exercise to try which we have not started yet.

It has been extremely emotional for the family to deal with this situation and we are doing everything we can to keep a brave front while we deal with this situation.

I got few questions and appreciate forum experts responses:

1. What else I can do to try other non-surgical routes? Is there any danger in trying all of the above simultaneously (Yoga, Schroth and Medx TR).
2. How to meaningfully measure her progression without getting x-rays in short intervals?
3. I read about Fibrillian-1 and Fibrillian-2 gene mutations as potential causes for AIS and is there any hope for gene therapy (which is probably too late for my daughter).
4. If her curve progress and situation gets into surgery territory, should we consider doing it now versus six months from now or a year later etc so it would not become very difficult surgery.
5. Should we get an MRI now to rule any other causes of scoliosis, one of the Orthos suggested since she said we will do one before a surgery (she was assuming we will go for one soon)

Thank you all in advance for your time and responses. If I missed providing any additional information that would help to answer a question, please let me know.

Thanks.

-Sam

[Pooka1]

Hi Sam. I am sorry to hear about your daughter's diagnosis. It's like a ton of bricks. I'll try to answer your questions but I hope others do so also.

1. What else I can do to try other non-surgical routes? Is there any danger in trying all of the above simultaneously (Yoga, Schroth and Medx TR).

In terms of what to try, do you mean all available treatments or just treatments shown to be effective? In re simultaneous treatments, nobody know the answer to that because it hasn't been studied. For something like TR, only 35 people in the world have been studied for example and it certainly hasn't been studied in conjunction with other PT.

2. How to meaningfully measure her progression without getting x-rays in short intervals?

That's an important question. There are low radiation and no radiation imaging techniques but I am not sure where you can find them. Ask your surgeon.

3. I read about Fibrillian-1 and Fibrillian-2 gene mutations as potential causes for AIS and is there any hope for gene therapy (which is probably too late for my daughter).

Did someone mention Marfans to you? There is a genetic test for this but there is about a 10% false negative so Marfans can't be ruled out with it. But scoliosis associated with Marfans is only a small percentage of AIS. If someone is working on gene therapy for Marfans I'd like to know about it. I doubt it.

4. If her curve progress and situation gets into surgery territory, should we consider doing it now versus six months from now or a year later etc so it would not become very difficult surgery.

With a TL curve, my immediate question to the surgeon would be how low the fusion will go if you do it immediately versus if you wait. There are surgeons who operate on TL curves below the 50* trigger for the sole purpose of saving levels in the lumbar. This matters because it might mean the difference between only having one fusion surgery in her life versus needed a second that goes to the pelvis (fusing all the lumbar). Only a surgeon can answer that. Your daughter is Risser 0 so that is going to matter in terms of avoiding crankshaft. Again, you need to ask the surgeon.

5. Should we get an MRI now to rule any other causes of scoliosis, one of the Orthos suggested since she said we will do one before a surgery (she was assuming we will go for one soon)

One of my daughter's had an MRI and the other didn't. The reason was the extremely fast progression rate.

Good luck going forward. This is fixable. Some things are not so there's that.

[titaniumed]

It has been extremely emotional for the family to deal with this situation and we are doing everything we can to keep a brave front while we deal with this situation.

Initial reactions to a scoliosis diagnosis can be a scary, heartbreaking thing.....Our minds whirl with questions of the unknown(What is going to happen?) while we are in shock, then after a while we do calm down, we do, and we accept our situations after time passes. Try to remember that its nobodies fault, these things happen. Learn to breathe to control anxiety.

Your daughter has a 40 over 50 at age 13....it’s a good size curve for that age, some are way worse and some are not. Dingo’s boy was around 9 years of age with a 10, and nipped it in the bud, nice to put the fires out at an early stage....Please remember that curves have errors in measurement due to many factors(+/-5°) so I simply round numbers. Progressing from a 38 to a 39 isn’t worth too much worry and worrying and stressing the little things isn’t good for the health.

She needs to be seen by a scoliosis surgeon. Not just a regular orthopedic, scoliosis surgeons go through extensive training, and it should be done at one of the known scoliosis training centers. HSS, TCSC, UCSF etc....I did consult with a “regular” ortho years ago and he was honest enough to back down, at least he had some integrity. Initial selection of your surgeon regardless of if you do surgery or not, is very important. My surgeon trained for 19 years and came out of Twin Cities Scoliosis center which was where the SRS was founded, in Minneapolis in 1966. Direct all of your surgical and scoliosis questions to your surgeon, these guys can rule out things that others will miss.

There are some really knowledgeable people on this forum and I’m sure many will chime in after recovering from Thanksgiving dinner....Sometimes I wonder if this recovery is worse than scoliosis? (smiley face)

Deep breaths.....and welcome to the forum

Ed

[LindaRacine]

A couple of thoughts...

Dingo's kid had a TINY curve, which is almost certainly different than your child. He is not a trained therapist.

If this were my child, I would probably pick one therapy that seemed reasonable, and try that. As Pooka mentioned, nothing specific has actually been proven effective at this point. If your child seems reluctant to try something, you might want to consider trying to convince her to do side planks. There is a recently published study on this exercise. What I really like about it is that it requires very little effort.

Side planks article

The other thing to add to all of the stress of this issue is that you should be careful about making too big an issue of it. Some kids take too much parental involvement as a sign that their parents think they're imperfect. Some years ago, as part of the SRS Bracing course, I heard a specialist say that a parent should never insist on bracing at the cost of destroying the relationship with their child. To be fair, however, I have heard from adults who are disappointed that their parents didn't insist on pushing them into treatment (both non-surgical and surgical). All you can do is educate yourself (you've obviously already done a great job at that), and make the best informed decision that you can.

My advice is to let your kid know that this is a serious issue and that you want to help, but that you also value their involvement in determining which treatments to try and that whatever the chosen treatment, it might not work. Unfortunately, once we have a diagnosis of scoliosis, the vast majority of us have to deal with it for the rest of our lives.

--Linda

[Pooka1]

My advice is to let your kid know that this is a serious issue and that you want to help, but that you also value their involvement in determining which treatments to try and that whatever the chosen treatment, it might not work.

This is such great advice. You want your child to own this but know that you will help them. Your daughter knows as much about torso rotation as you and Dingo do... there is very little to actually know. Dingo is a lay person. Dingo's son's curve crept up a little then seemed to stop. It is impossible to say that was due to TR. Gayle's son's curve crept up and then stopped and is regressing without doing ANYTHING. Does that mean TR stopped Dingo's son's curve regression? Who knows? The point is nobody knows anything since only 35 people have been studied and they certainly didn't all avoid surgery. The grandson of the lay woman who invented Schroth, a trained surgeon and researcher, gave it up and admitted it wouldn't help people like your daughter with large curves. There is no evidence yoga let anyone avoid surgery because some curves, even large ones, stop progressing on their own.

There are horror stories of melt downs in young adults who feel they were lied to by their parents in cajoling them to do a treatment and then they still needed surgery. Please be careful what you tell your daughter. The fact is there is no conservative treatment that has been shown to let kids avoid surgery for life if they are going to be surgical.

It is unfortunately the case that it is very hard to study conservative treatments. They may work but we don't know that. The plank exercise seems like a good try because it isn't burdensome if a child wants to try it. That doesn't mean it helps people avoid surgery for life.

[3sisters]

Hi Sam-

Good for you, willing to try everything and anything. However, at Risser 0, and those high numbers, the probability of progression is statistically very great. I hope you see a specialized scoliosis surgeon as soon as possible before time, money, and energy lost on unproven therapies! Read the threads here to see the path taken by many in the same situation as your daughter.

Possibly, your daughter could be a candidate for Vertebral Tethering which is a non-fusion surgery that would preserve her range of motion and avoid fusion. However, the window of opportunity is very small for this so I highly encourage you to contact a doctor experienced in this now. It requires low Risser, and ideally Cobb angles not much greater than hers currently are. Some surgeons performing this include Drs Betz and Antonacci, Shriners in Philadelphia, Dr. Newton at RADY, and Dr. Diab at UCSF.

Best of luck to your daughter,
Emily

[Pooka1]

Tethering! Very good suggestion. At Risser 0 I hope she would be a good candidate. I think you are still under the upper limit for Cobb angle.

If they take her and it works, she would hopefully avoid fusion.

One other thing you might want to ask a surgeon... if genetically driven anterior overgrowth of the spine results in curvature, how will any PT be it torso rotation, yoga, Schroth, chiro, etc. ever work in the long term?

[saminD]

One other thing you might want to ask a surgeon... if genetically driven anterior overgrowth of the spine results in curvature, how will any PT be it torso rotation, yoga, Schroth, chiro, etc. ever work in the long term?

Well, no surgeon recommended anything other than Brace. I am trying them all to see what we can do to potentially avoid surgery and I appreciate a dose of reality that Surgery might be only option but immediately I would like to see if we can stop the progress and Linda's suggestion of Side Planks is great.

Hi Sam-
Possibly, your daughter could be a candidate for Vertebral Tethering which is a non-fusion surgery that would preserve her range of motion and avoid fusion. However, the window of opportunity is very small for this so I highly encourage you to contact a doctor experienced in this now. It requires low Risser, and ideally Cobb angles not much greater than hers currently are. Some surgeons performing this include Drs Betz and Antonacci, Shriners in Philadelphia, Dr. Newton at RADY, and Dr. Diab at UCSF.

Best of luck to your daughter,
Emily

Thank you Emily for the suggestion. I will read up on Vertebral Tethering.

The fact is there is no conservative treatment that has been shown to let kids avoid surgery for life if they are going to be surgical.

It is unfortunately the case that it is very hard to study conservative treatments. They may work but we don't know that. The plank exercise seems like a good try because it isn't burdensome if a child wants to try it. That doesn't mean it helps people avoid surgery for life.

A couple of thoughts...

Dingo's kid had a TINY curve, which is almost certainly different than your child. He is not a trained therapist.

If this were my child, I would probably pick one therapy that seemed reasonable, and try that. As Pooka mentioned, nothing specific has actually been proven effective at this point. If your child seems reluctant to try something, you might want to consider trying to convince her to do side planks. There is a recently published study on this exercise. What I really like about it is that it requires very little effort.

Side planks article

The other thing to add to all of the stress of this issue is that you should be careful about making too big an issue of it. Some kids take too much parental involvement as a sign that their parents think they're imperfect. Some years ago, as part of the SRS Bracing course, I heard a specialist say that a parent should never insist on bracing at the cost of destroying the relationship with their child. To be fair, however, I have heard from adults who are disappointed that their parents didn't insist on pushing them into treatment (both non-surgical and surgical). All you can do is educate yourself (you've obviously already done a great job at that), and make the best informed decision that you can.

My advice is to let your kid know that this is a serious issue and that you want to help, but that you also value their involvement in determining which treatments to try and that whatever the chosen treatment, it might not work. Unfortunately, once we have a diagnosis of scoliosis, the vast majority of us have to deal with it for the rest of our lives.

--Linda

Thanks Sharon and Linda on your input on conservative approaches, just that parent in me wishes best possible for my child though sometimes it simply does not exist. I was thinking, as long as it does not harm, I want to give a shot for any conservative approach. I will definitely try the Side Planks exercise for her.

Initial reactions to a scoliosis diagnosis can be a scary, heartbreaking thing.....Our minds whirl with questions of the unknown(What is going to happen?) while we are in shock, then after a while we do calm down, we do, and we accept our situations after time passes. Try to remember that its nobodies fault, these things happen. Learn to breathe to control anxiety.
......

She needs to be seen by a scoliosis surgeon. Not just a regular orthopedic, scoliosis surgeons go through extensive training, and it should be done at one of the known scoliosis training centers. HSS, TCSC, UCSF etc....I did consult with a “regular” ortho years ago and he was honest enough to back down, at least he had some integrity. Initial selection of your surgeon regardless of if you do surgery or not, is very important. My surgeon trained for 19 years and came out of Twin Cities Scoliosis center which was where the SRS was founded, in Minneapolis in 1966. Direct all of your surgical and scoliosis questions to your surgeon, these guys can rule out things that others will miss.

There are some really knowledgeable people on this forum and I’m sure many will chime in after recovering from Thanksgiving dinner....Sometimes I wonder if this recovery is worse than scoliosis? (smiley face)

Deep breaths.....and welcome to the forum

Ed

Thank you Ed for those words of encouragement. We are still trying to understand and accept the situation and this has been the hardest things encountered in my life. I have met with surgeons who have done many of these surgeries, they only talked about open surgery with fusion (as both surgeons said it is gold standard now and it is easy for teenagers to recover) and honestly we were not prepared to ask surgery related questions but getting initial consultation. One of them reluctantly agreed to try Brace but said we would have same conversation four months from now with potentially increased curvature. Third surgeon suggested, let's give Brace a chance and see if it stops progression.

Hi Sam. I am sorry to hear about your daughter's diagnosis. It's like a ton of bricks. I'll try to answer your questions but I hope others do so also.

1. What else I can do to try other non-surgical routes? Is there any danger in trying all of the above simultaneously (Yoga, Schroth and Medx TR).

In terms of what to try, do you mean all available treatments or just treatments shown to be effective? In re simultaneous treatments, nobody know the answer to that because it hasn't been studied. For something like TR, only 35 people in the world have been studied for example and it certainly hasn't been studied in conjunction with other PT.

2. How to meaningfully measure her progression without getting x-rays in short intervals?

That's an important question. There are low radiation and no radiation imaging techniques but I am not sure where you can find them. Ask your surgeon.

3. I read about Fibrillian-1 and Fibrillian-2 gene mutations as potential causes for AIS and is there any hope for gene therapy (which is probably too late for my daughter).

Did someone mention Marfans to you? There is a genetic test for this but there is about a 10% false negative so Marfans can't be ruled out with it. But scoliosis associated with Marfans is only a small percentage of AIS. If someone is working on gene therapy for Marfans I'd like to know about it. I doubt it.

4. If her curve progress and situation gets into surgery territory, should we consider doing it now versus six months from now or a year later etc so it would not become very difficult surgery.

With a TL curve, my immediate question to the surgeon would be how low the fusion will go if you do it immediately versus if you wait. There are surgeons who operate on TL curves below the 50* trigger for the sole purpose of saving levels in the lumbar. This matters because it might mean the difference between only having one fusion surgery in her life versus needed a second that goes to the pelvis (fusing all the lumbar). Only a surgeon can answer that. Your daughter is Risser 0 so that is going to matter in terms of avoiding crankshaft. Again, you need to ask the surgeon.

5. Should we get an MRI now to rule any other causes of scoliosis, one of the Orthos suggested since she said we will do one before a surgery (she was assuming we will go for one soon)

One of my daughter's had an MRI and the other didn't. The reason was the extremely fast progression rate.

Good luck going forward. This is fixable. Some things are not so there's that.

Both surgeons suggested going to L4 but one of the surgeon suggested, we could try to fuse the large curve now with hope that it would correct the thoracic curve enough to be not a problem. But she said, if it does not work, then you have to have second surgery to correct the situation. My family was in tears by that time as it was first time we were hearing about surgery and we were not in a position to ask follow up intelligent questions.

Again, I thank you all for your time and response and I hope to learn more as we continue on this journey.

[Pooka1]

At Risser 0 I really hope your daughter would qualify for tethering. But you might have to move quickly on this. There is a time window here.

I know you are in a whirlwind but tethering might be a real chance to avoid fusion. It's still surgery but not fusion surgery. There is probably more evidence of efficacy for tethering despite being new than there is for all PT combined.

On the brace thing, as far as I know the present indications are a curve between 25* and 40*. If an SRS surgeon agreed to give you a brace that would be going off the reservation as far as I know. I would be less surprised if a non-SRS surgeon offered it. There is a reason the bracing window ends at 40*.

[Pooka1]

open surgery with fusion (as both surgeons said it is gold standard now and it is easy for teenagers to recover)

If your daughter does need fusion, I bet she will have a relatively easy recovery. Both my daughters were back in school full time between 3 and 4 weeks post op. One went to a prom about 3 weeks post op if I recall correctly.

They can be off pain meds within a month or so. It's really amazing.

Hang in there. It is a ton of bricks. This is fixable though it will be hard on everyone in the meantime. You can do this. :-)

[jrnyc]

hi Sam
welcome...
maybe it is the social worker in me (licensed in NYS, retired)
but please be careful how you explain how serious this is
to your daughter...
it might be advisable to locate a counselor, to have one ready
in case your daughter needs someone outside of the family
to talk to....
also, having been a 13 year old girl at one time, many years ago....
reactions might vary....she could go thru the (classic) stages of grief over this...
she might display anger, shock, any array of feelings/behaviors...
and....IF you can find another teen with scoli for her to talk to..
that could be helpful.

i am sure your daughter is a lovely and mature young woman..
BUT....it can be a tough diagnosis for an adult to hear....
for a 13 year old...well....it just might be a little too much...

best of luck...
jess

[titaniumed]

Thank you Ed for those words of encouragement. We are still trying to understand and accept the situation and this has been the hardest things encountered in my life. I have met with surgeons who have done many of these surgeries, they only talked about open surgery with fusion (as both surgeons said it is gold standard now and it is easy for teenagers to recover) and honestly we were not prepared to ask surgery related questions but getting initial consultation. One of them reluctantly agreed to try Brace but said we would have same conversation four months from now with potentially increased curvature. Third surgeon suggested, let's give Brace a chance and see if it stops progression.

Yeah, I guess its hard......I almost forgot since it was 40 years ago that I went through the same thing. After I got through the shock phase, I was fine with it, accepted it, I wasn’t going to let it affect my life at that moment. With girls, I suppose it could be harder....

I had an “S” curve with twin 50 degree curves at age 15 in 1974, and the docs I saw didn’t recommend braces. It was more of an exercise program and surgery during those years was not a consideration, and I was skiing 4 days a week. Doing nothing was an option in my case.....and my curves basically held. I say this because they didn’t progress like wildfire which is something we have to be aware of. The only way to monitor is with x-rays....not by looking since large curves can hide themselves quite well. I ended up with twin 70’s by the time I was 49. 20 degrees progression in around 34 years.... That was a long stretch, my pre-fused years.

I bought a brace from an Orthoist named Art Copes. I used it for skiing since I was afraid of some of the brutal crashes I used to take. The harder you ski, the harder the crashes are....Anyway, bracing is not an easy program, mine fit tight as a ski boot and it was or could be painful. Once I was driving while wearing it and had to pull over on the highway since it was just killing me. I came to the conclusion that there was no way I was going to get any correction of my curves other than doing surgery, and I was going to wait for technology to advance which it did.

This forum has been great since we didn’t have this communication years ago. There was no-one to talk to. There are kids forums someplace, I don’t know because I don’t pay attention, perhaps someone will chime in. (smiley face) That’s the beauty of the forum, we all sit around the table and discuss matters and if someone forgets something, another will contribute valuable information.

Scoliosis isn’t the end of the world....its more of a lifetime of challenges, which molds us into the fantastic group of people we are. Fusion isn’t the end of the world either, Banana George was fused in the early 50’s and lived to around 98. He was a barefoot waterski pioneer.

Here is a video of me skiing after my scoliosis surgeries. Show it to your daughter at some point when the time is right. Positive thoughts always come in handy.....
http://www.youtube.com/watch?v=4tEypv3Vz8o&feature=plcp

That and deep breaths.....

Ed

[coolblue]

I would suggest tethering as she is just at the threshold. I agree with Pooka that there is a time window and it may be shorter than you think.

My daughter's case was almost the same as yours only her Risser levels were higher 3/4 so tethering was ruled out. We tried everything else (PT, Iyengar Yoga etc) but ended up with surgery. Nonetheless, no regrets as we had tried everything else prior to surgery.

At four weeks post surgery my daughter is pain free and attended school for a couple of hours today for the first time.

Do keep posting your anxieties on the forum as this is a great support group of people who understand your predicament.

Best wishes,

[AMom]

Hi Sam,

Wow, lots of good advice. I’m not sure how helpful I can be, but I do know a little about PT for scoliosis so I’ll chime in.

You mentioned your daughter having a 38˚ T & 49˚TL curve, so I am assuming the thoracolumbar curve is the major curve and the thoracic curve is the compensatory curve. However, if the TL is the major curve, then it is beyond the range of bracing so I am a bit confused. Even if it was the other way around or a double major, I wouldn’t think a scoli ortho would recommend bracing with curves this size considering the fact your daughter is so skeletally immature. Here is a link to an article written by Asher: http://www.scoliosisjournal.com/content/1/1/2 that explains why I am wondering about the talk about bracing.

If the TL curve is the major one, or she has a double major, and you use the CTR PT (to date I have never come across any thoracolumbar curves that have been reduced with CTR; to the best of my knowledge it has only reduced T and L curves) it would leave your daughter with pretty large curve/s (or an unbalanced set if it reduced the T curve) going into adulthood. It is comforting right now to stabilize the curve/s, but in the long run it may cause future problems. I generally think of using CTR for curves under 35 degrees. –Any extra exercises beyond the CTR and RC are nice and generally good for overall health, but have not been shown to modify a scoliosis curve.

Since her Riser is so low, if her curve size is within the range of tethering or stapling, then those are both possible options, but the procedure is only done at certain sites, so your ortho may not mention them if he doesn’t have experience with them. Here is a support group site if you would like to check into it: http://www.vertebralstapling.com/

Linda mentioned trying a side plank pose daily with the addition of the ribs raised vertically and that may have an impact; however, there are very few people in the study (25) and the majority of them had degenerative scoliosis in addition to AIS rather than AIS only so the subset is even smaller (approx. seven (7) 14-19yr olds). We don’t have any data about the level of maturation in the participants yet; and no one knows how long the yoga pose will need to be continued in order to maintain stability for adolescents; possibly indefinitely. –Adults who have stopped the side plank pose have lost their curve correction. This isn’t to say it is a bad idea as the time and effort is minimal and the cost is nothing.

There isn’t a way for a layperson to measure curve progression. The ortho has to order an x-ray or similar test to find out what the spine is doing.

Sharon mentioned “saving levels” and that is an important consideration, so the question of whether to do the surgery now vs later is a good one to pose to a scoli ortho. Keep in mind that a regular ortho is not the same as one who regularly treats scoliosis.

An MRI will show more than an x-ray so if an ortho suggests one, it can be helpful in making decisions.

Lots of good questions. It sounds as though you are doing all you can to make the best decisions possible.

A Mom

[mariaf]

At Risser 0 I really hope your daughter would qualify for tethering. But you might have to move quickly on this. There is a time window here.

I know you are in a whirlwind but tethering might be a real chance to avoid fusion. It's still surgery but not fusion surgery. There is probably more evidence of efficacy for tethering despite being new than there is for all PT combined.

I would try to get a consult with a surgeon who performs tethering - if for no other reason, than for peace of mind that you did all you could to help your daughter avoid fusion. Please let me know if you would like the names of doctors around the country who perform this procedure, so that depending on where you live, perhaps you can find someone not too far from you - there is even a list I can email to you. Best of luck!