13 year old daughter with a 44 degree lumbar curve

[coolblue]

Our 14 year old daughter has been diagnosed with adolescent idiopathic structural thoracolumbar scoliosis. We are based in India. We had been to Mumbai for consultation with Dr. Bhojraj, a spine surgeon at Lilavati Hospital. She has just been for her six monthly checkup and as per the XRays the curve seems to have gotten much worse. It has progressed by a whopping 11 degrees in these six months. During this time she has actively practised Iyengar Yoga and done a bit of swimming. These obviously do not seem to have helped even though the doctor did mention that she is remarkably well balanced visually.

Dr. Bhojraj (Mumbai) has suggested to go for a full fusion surgery sooner than later. Especially in view of the fact that she still has atleast one year of growth spurt left.

Her details are as under :
Cobbs Angle at time of detection : 33degrees for the Lumbar Curve as per X Ray report.
Cobbs Angle Currently : 44 degrees
Menarche : March 2013
Growth in Height during last six months : 5 cm. Current Height : 154 cms
Gain in Weight during last six months : 2.5 kgs. Current Weight : 41.5 kgs.
Visual Balance : Good. Difficult to make out that she has scoliosis from visual appearence.
Pain : No Pain. She can do all her activities normally.
Braces : Not opted for perhaps due to the xray showing a Rissser 4 and the fact that it would have a psychological impact on the child not to mention the obvious discomfort.
Current Regimen (For Past Six months): Aggressive yoga (Iyengar Yoga) and swimming exercises. (avg one hour daily)
MRI : Clear. No Neurological Deficit found.
Spirometry : Clear
Eco-cardiogram : Clear
Latest Advise by Doctor : Full Fusion Surgery as early as possible.

We are also planning a consultation with Dr. Sajan Hegde at Apollo Chennai, who has also been reccomended by Dr. Betz, for his opinion. From the websites I can glean that he performs Robotic surgery using Renaissance Robotic Spine Surgery which I believe is minimally invasive. Wonder if she could qualify for the procedure looking into the nature of her curve ? Meanwhile we are continuing with yoga

I have the following questions in case you could answer them :
1. As per feed back received from Janet Cerrome of Shriners VBS / Tethering is not an option as she is probably reaching the end of her growth spurt? .
2. In your opinion what would be the hazard of waiting for six months say if the curve progresses by another 10 degrees.
3. Is that any way of saving her from getting fused till L4/L5/S1.
4. What are the best possible instrumentation that should be used in case of full fusion surgery.
5. Doctors suggested in US : Dr. Betz of Shriners and Dr. Ashghar of Miami. Dr. Lenke I believe may not take such a case. Please let me know if there could be others in the US or Europe / Asia
6. Any latest non invasive or minimally invasive techniques on this subject. Can she be a candidate for Minimally Invasive Spine Surgery like XILF ? Will it save lumbar levels ?
7. Her curves seem flexible? Post surgery hope that would lead to a good correction ?
8. What would be approx. cost of surgical intervention in the US considering my Insurance does not extend overseas. Shriners I understand does it free of cost for US citizens but am not sure whether we would qualify. Have written to them in any case.
9. Quality of life post full fusion in terms of pain, day to day chores and athletic activities. I have heard many in the forum especially Pooka being very concerned about fusing below L2 levels at such a young age as it would not only lead to significant loss of mobility but also a much early degeneration of the remaining lumbar levels

I understand that these are a host of questions but have just been registered after waiting for six months and with the curve progressing at the pace it has it really has stumped us. Please do let us have the benefit of your collective wisdom and experience by sharing your thoughts.

Also want to put in a word of appreciation for the moderators and the parents who have made this forum an excellent source of information but also a much needed support system for families the world over.


Thanks,

Coolblue

[Pooka1]

Hello coolblue and welcome.

First I just want to suggest you not post personal information about your daughter (name, date of birth, etc.) either in your post or on the radiographs. I bring the images into Word and place a black box over the area where the information is printed before I post it publicly.

I hope more people answer your questions. I will try.

We are also planning a consultation with Dr. Sajan Hegde at Apollo Chennai, who has also been reccomended by Dr. Betz, for his opinion. From the websites I can glean that he performs Robotic surgery using Renaissance Robotic Spine Surgery which I believe is minimally invasive. Wonder if she could qualify for the procedure looking into the nature of her curve ? Meanwhile we are continuing with yoga

Minimally invasive surgery is only as good as the surgeon's experience to back it up. If he has done many successful surgeries of a double major curve then it is something to consider. If you don't go that route, your daughter's recovery will still likely be pretty short... a few weeks if she is average.

I have the following questions in case you could answer them :
1. As per feed back received from Janet Cerrome of Shriners VBS / Tethering is not an option as she is probably reaching the end of her growth spurt? .

You have to get the surgeon to determine how much growth is remaining with a hand/wrist radiograph. Get it scored and then report that to Philly/Shriners

2. In your opinion what would be the hazard of waiting for six months say if the curve progresses by another 10 degrees.

That is a question for a surgeon. But my daughters had curves in the high 50s when they were fused. One is straight... no residual scoliosis. Her curve moved 5* a month for the entire 6 months of observation. Her curve went from 48* to 58* in the two months between when we scheduled the surgery and when she was fused. Every case is different, though, even between my identical twins.

3. Is that any way of saving her from getting fused till L4/L5/S1.

That is a question for a surgeon. I can give my UNLETTERED opinion about this... just reading the testimonials on here, kids with double major curves like your daughter's are most often fused only to L3 no matter how far dawn the structural lumbar curve extends as far as I understand WHICH ISN'T FAR! More rarely, a child is fused to L4. At least one surgeon will do osteotomies to avoid going too low in kids. You need to talk to a surgeon! But I would get more opinions if they wanted to go below L3.

4. What are the best possible instrumentation that should be used in case of full fusion surgery.

You pick your surgeon who picks the instrumentation he knows best. Lay people don't pick instrumentation.

5. Doctors suggested in US : Dr. Betz of Shriners and Dr. Ashghar of Miami. Dr. Lenke I believe may not take such a case. Please let me know if there could be others in the US or Europe / Asia

Dr. Lloyd Hey in Raleigh North Carolina seems to be very concerned about keeping fusions as short as possible and doing them as early as possible once it is determined a child is in surgical range. Here is his blog...

http://drlloydhey.blogspot.com/

Here is his contact info: https://www.heyclinic.com/index.asp

6. Any latest non invasive or minimally invasive techniques on this subject. Can she be a candidate for Minimally Invasive Spine Surgery like XILF ? Will it save lumbar levels ?

That is a question for a surgeon.

7. Her curves seem flexible? Post surgery hope that would lead to a good correction ?

Yes it can lead to a good correction but that doesn't mean it should. My one daughter's curve was very flexible and probably could have been straightened more but it wasn't because straightening her type of curve too much leads to a high left shoulder and non-optimal balance in some planes. The other one had a different curve that could be hyper-corrected and she is perfectly straight other than some minimal rotation. Only a surgeon can answer for your daughter.

8. What would be approx. cost of surgical intervention in the US considering my Insurance does not extend overseas. Shriners I understand does it free of cost for US citizens but am not sure whether we would qualify. Have written to them in any case.

Go with Shriners. I think you are looking at $100K or thereabouts or more. More if there are complications. Shriners take kids from other countries. They took two children from Canada recently (last few years).

9. Quality of life post full fusion in terms of pain, day to day chores and athletic activities. I have heard many in the forum especially Pooka being very concerned about fusing below L2 levels at such a young age as it would not only lead to significant loss of mobility but also a much early degeneration of the remaining lumbar levels

I am NOT A SURGEON! My concern is what I read about the tendency to need an extension based on how low the fusion extends. I don't make the news! I just report it!

I understand that these are a host of questions but have just been registered after waiting for six months and with the curve progressing at the pace it has it really has stumped us. Please do let us have the benefit of your collective wisdom and experience by sharing your thoughts.

I don't know why it would take 6 months to register but I believe you!

Also want to put in a word of appreciation for the moderators and the parents who have made this forum an excellent source of information but also a much needed support system for families the world over.

It's very daunting to be faced with this diagnosis in your child. The people on this forum have gained some experience and just want to help. None of us are surgeons who are the only people who can answer many questions parents have.

I'm glad you joined us and I want to wish you and your daughter much luck.

[coolblue]

Thank you Pooka for your detailed and timely response as always. I appreciate that opinions of informed parents like yourselves are just that and cannot be substituted for doctors advise. However it does give a direction to newbies on the questions to ask for and the need to seek more opinions.

The crux here is how to save levels in the lumbar. The doctors here are more conservative in their approach (nothing wrong with that). However most seem keen to go down to L4/ L5 in my daughters case looking at her curve placement. I would be keen to hear from Dr. Betz's team regarding his choice of fusion levels. Thank you for Dr. Hey's reference. Would be writing to him as well for his opinion.

Meanwhile would love to hear opinions from the others as well.....

[titaniumed]

She has a good set of curves......and along with the lumbar levels, it’s a whole package. I’m wondering about her neck, there seems to be quite a lean in her x-rays. Her neck is pitched around 15 or so degrees in the first attachment which is a standing film.

Many of your questions are questions that only a scoliosis specialist can answer just like Sharon has mentioned. It would be prudent to at least see another scoliosis specialist for a second opinion. Address what levels they propose to fuse and talk about the future. Scoliosis is a life time thing....Many have revision surgeries years later.

I hope your daughter is taking this ok. Usually upon diagnosis we go through a few phases trying to cope. Shock and anger, all the “why” questions, and eventual acceptance. Pain will happen at some point, it could happen tomorrow or take 50 years. Dealing with pain is something we get used to. I think I’m used to it now?, after 40 years, I still don’t know. Of course, I have to joke about these things.

Remember that there is no blame. This is not anyone’s fault, scoliosis happens and it happens to quite a few people.

How many scoliosis surgeons are in India? When you find out, let us know. With 1.3 billion people, there has to be more than a few.

Welcome to the forum

Deep breaths.....

Ed

[coolblue]

Dear Ed,

Thank you for your inputs

Will surely ask the specialist I am seeing next week regarding the neck thing.

Whilst there are a lot of surgeons in India who are doing scoliosis surgery only a handful could be said to specialize in Scoliotic procedures. Once I get more opinions I would post the same in the forum for comments. I am also keen to fuse as less lumbar levels now and keep the options open for a future revision surgery if required.

I have also got a response from Dr. Hey's office and would be sending them the xrays for their evaluation next week. Dont really know whether they would evaluate the case without physically seeing my daughter.

My daughter and my wife are focused on doing everything in their power to ward of surgery. They are currently doing yoga and we are also contemplating enrolling for the Scroth programme in Germany as a last ditch effort. Would be quite a task to get her onboard for surgery but will cross that bridge when we come to it.

Finally yes Deep Breaths it is.......

[Pooka1]

[...] and we are also contemplating enrolling for the Schroth programme in Germany as a last ditch effort.

You should know that the doctor who was running the Schroth program (Weiss) who is the inventor's grandson has recently admitted he has abandoned Schroth PT as a treatment for scoliosis. He only recommends bracing now which is equally problematic in terms of avoiding surgery for life.

You might consider saving your money by avoiding Schroth. While Weiss was running the clinic, there were about 30,0000 patients in about 10 years and STILL he could not document efficacy of the Schroth treatment to avoid surgery. There is no evidence for the efficacy of any type of PT in avoiding surgery.

[coolblue]

Thank you Sharon. Will keep it in mind....

[LindaRacine]

Hi Coolblue...

Welcome!

I pretty much agree with what Pooka1 posted. She's give you fairly solid advice. I mostly wanted to compliment you on doing a good job of getting informed. Your observations and questions are pretty solid.

My one piece of advice would be to not feel the need to rush into surgery. At a Risser 4, I think it's probably unlikely that your daughter will have a massive growth spurt. And, even if she does, the surgical techniques used today would probably lead to great correction whether your daughter's major curve is 40 degrees or if it's 70 degrees.

Best of luck with your decisions.

Regards,
Linda

[coolblue]

Dear Linda,

My questions and observations emanate from the posts in this forum. Cannot express how grateful we (and many other parents like us) are for having such a huge repository of information for this condition. At least here in India we are still largely unaware of the latest developments in this field.

Thanks for your advice about not rushing into surgery. We are seeing another surgeon in Chennai (who uses Renaissance Robotic Surgery techniques) for his views and should be able to post the entire discussions and comparative approach by next week.

I too hopeful that we are at an inflection point and should see some more advancements in surgical procedures to either reduce fusion levels or developing something akin to tethering for skeletal mature patients. Hope I am proved right....


Best regards,

[Pooka1]

[...] an inflection point

May I ask if you are a chemist or mathematician? :-)

[coolblue]

May I ask if you are a chemist or mathematician? :-)

..None.. Just an armchair economist hoping for a much awaited turn of the curve (pun intended) LOL...

[Dingo]

My daughter and my wife are focused on doing everything in their power to ward of surgery. They are currently doing yoga and we are also contemplating enrolling for the Scroth programme in Germany as a last ditch effort.

Hi Coolblue,

I've spent thousands of hours reading about Scoliosis and although exercise is good for any child yoga or stretching probably won't have any effect on your daughter's curve. However torso rotation strength training might. TRS is new. It's fast, effective and outside of the cost of either a gym membership or 1 used exercise machine for use at home it's free.

Here is a link to a thread that includes all of the information and studies that back it up.
Torso Rotation Strength Training for Scoliosis

Here is a link to a thread that talks about my son's experience with TRS over the past 3 years. Long story short it worked for him just like it did the children in the studies.
Torso Rotation Therapy - How Scott is doing update

Good luck! 8-)

[susancook]

Cool blue, only a few comments since adolescent scoliosis is not within my person experience. Rely on research findings that have been replicated in your guidance. Sometimes we get caught up in anecdotal information/personal experiences for information. Specifically, I am referring to doctors that may make claims that are not backed by good science.

You probably already have a good connection at Schriners, but if you need any information about their policies, I have a good friend that is in administration there. Send me a personal message if you need assistance there. I agree with the comment about going with Shriners if that is possible and if it is your choice for medical care in the US as others have mentioned the phenomenal cost of surgery. You would need to add on the transportation cost as well as lodging/food. In addition, you might want to stay near the hospital for some time after surgery in an apartment before undertaking the international flight back to India.

Your daughter is fortunate to have such a caring and involved parent. There appear to be some very good books for teens on scoliosis which may help to decrease her anxiety about what is happening to her body and help her to see that scoliosis happens to lots of other kids.

Best of luck in your quest to support your daughter. Susan

One last comment: you may find that over time going to different doctors and hence different X-ray machines and perhaps ability to read curves that there is a difference in interpretation of scoliosis angles. Always keep in mind that small changes in reports or small variability in readings can be due to that difference between machines. The best way to monitor change is to use the same machine over time.

[coolblue]

Just back from the second opinion from the doc. He too has suggested a full fusion posterior surgery sooner than later. Suggested levels T3/T4 to L4.

Attached are latest xrays.

We have decided to continue with Scroth (from the book), Torso Rotation (Thanks Dingo) and Side Shift along with Yoga (to retain flexibility). for the next month to see if she can hold her curve. The first attempt would be to sustain the curvature and then to see if it can be reduced. We have given ourselves three month windows at the end of which we shall take a call whether to continue with exercises or opt for surgery. Meanwhile as suggested by Pooka have also emailed to Dr. Hey to see if he can suggest how to save the lumber levels and also written to Shriners Philly (TQ Maria / Susancook) to see if they could be of help to us in case we do need surgery.

Would like to acknowledge the overwhelming support both on the forum and via PM from all. It just gives us the feeling that we are not alone in battling this condition and there is a whole family worldwide offering their advise and support.

Shall keep you updated regarding the progress or otherwise. Meanwhile please let your comments keep on flowing...

God Bless,

[titaniumed]

We have given ourselves three month windows at the end of which we shall take a call whether to continue with exercises or opt for surgery.

Even though we set and use dates for everything we do, I don’t think that you need to be “too” worried about this right now. You can proceed and see what happens with the exercises and the stretching and monitor the curves, but I wouldn’t plan on a surgery on the 91st day if this doesn’t work. You don’t move forward with surgery just to get it done, to get it done. She is most likely through most of her growth curve, chances are that she wont progress like a wildfire. Many here including myself had worse curves as teens and waited many many years.....I waited for technology, so waiting 34 years when I did and doing this now are not the same scenario. Things are much better now.

They have done scoliosis surgeries on older patients....I don’t know the record off hand but I think it might be in the 80’s. So, if your daughter is 14, that’s 66 years from now. In other words, I think you can breathe a little and relax some. I wouldn’t wait this long since my 40’s were a painful period. If I could turn back time, I would have had my surgery at age 40.

Most that make it to being adults (age 18) that don’t have pain, usually wait to have surgery. These numbers drop off during the 20’s and then increase in the 30’s. I know I had pain in my 20’s, but it was something we learn to deal with and it wasn’t too bad. I can barely remember back to those days but I did have inversion boots back in 1982, so I guess I had some pain issues......I was snow skiing HARD, and had many brutal crashes, so we are not delicate. Its amazing what the spine can handle.

Every single surgeon and doctor told me that I needed surgery through the years. Even my Chiropractor, and they hate surgery! There were several patients he had with large curves and called us the “heavy hitters”. (smiley face) In the end, pain made my decision, so scary it took me a few years to actually set a date.

Now that you have 2 surgeons saying surgery, chances are that she will at “some point” need surgery. The question is when? The fact that they want to go to L4 isn’t the best thing, fuse to L4, and there is a strong chance that a revision would have to be done approx 20 years later to the pelvis.

Like I said, she has a good set of curves and I’m sorry. But I don’t think that its worth over worrying yourself over this. I also think that she needs to make her own decision, and there is a difference in making that decision as a child, and as an adult when we know in our own minds that it really needs to be done. As a parent who cares about our spines, we remember that when we age.....neglect or brushing it off as just a crooked spine can produce resentment, I know because this happened to me. You are a good parent, I want you to know this.

I just wanted to throw out some ideas and thoughts.....the forum is wonderful, if I make a mistake, someone will correct. I PM with patients and many of the times I will say “Lets throw this one up on the forum” as we do have some good posters here sitting at the table.

Here is my x-ray from 1993. I was 35. When I was 16, I had twin 50’s, so it didn’t move all that much in that 20 year period. My lumbar was also pretty bad at age 16.
My x-ray is from the back, your daughters is from the front. So simply invert.

Also, doing nothing is also an option.....This might sound crazy, but it happens all the time. You don’t have to make a decision because someone says so. Doing nothing is also a decision.....

Ed