frustrated

[mom to PJ]

Hello everyone! So glad I found this forum.

My 10 year old daughter was diagnosed with 2 thoracic curves and a compensatory lumbar curve at the age of 8 in early 2010 (she just turned 10 a couple of days ago). When she was diagnosed her curves ranged from 31 down to 19 in the compensatory lumbar curve. She has been in a TLSO brace since May of 2010. The curve seemed unchanged at her first follow-up but then increased to 37 at her last follow-up.

We are in the military medical system and her doctor is changing commands. Given her age and the chances of progression, I requested a second opinion to try to get her to a specialist with whom she will have continuity of care and can develop trust if it becomes necessary to have surgery.

By the way, just to give you some idea of the care, not that they are all bad... At the age of 6 we saw one of the PCMs for a respiratory infection. I noticed her rib hump at that point, in the doc's office, and was told it was nothing to worry about and I was concerned for no reason. We are currently with a nurse as our PCM and she's better than any of the doc's we've seen. You can only imagine my guilt at not having ignored the doc and scheduled an appointment immediately with someone else.

We were able to get a referral out for a second opinion to Children's Hospital of the King's Daughters. The doctor there is a scoliosis specialist and measured her curve at 42. I know that there are some differences just from it being two docs taking the measurements but that was in 3 months time. He knows her previous doc and all I got was that the brace is an appropriate treatment, come back in 4 months. To be honest, I wasn't incredibly impressed and am trying to figure out where to go from here. Is there anyone who can recommend a scoli specialist close to the Norfolk/Virginia Beach area? Any advice on dealing with Tricare and trying to get out of the military system?

Everything I am reading indicates that my daughter is in the highest risk group for progression. I fear that surgery is probably in her future. I am frustrated by the lack of information being passed on by the doctors we have seen thus far. There have been no recommendations of literature or research. No discussion of the different aspects of her scoliosis, etc. Most of what I know has been through my own stumbling through what I can find on scoliosis.

I'd appreciate any advice that can be offered. Thanks!

[mamandcrm]

Hi, I realize it's probably about 4 hours from you but we have had a good experience with the Virginia annex of the National Children's Hospital in DC. They have pediatric scoli specialists who work in the Fairfax clinic once a week. The appointments are usually just 2-3/year so maybe you could make that work for you. We see Dr. Blakemore, and get G's braces from Orthotic Solutions which is a few minutes away from the clinic. Because they are only there once a week, you need to book well in advance. Hope you find a better care solution for your daughter!

[Just realized that the main DC medical center may not be any further coming from the south and it's easier to get an appointment--same doctors, just different days]

[LindaRacine]

If you have a Shriner's anywhere near you, that would probably be a good start.

--Linda

[braceyourself]

Throughout my entire bracing experience, we've had to deal with Tricare since my dad was a Marine. As the child, I couldn't have cared less about all that, so I don't really know much about it. However, my parents do, and they enjoy talking with others and helping them out when it comes to those with kids who have scoliosis. If you ever want to shoot them an email, I can give you their address. Just thought that might be helpful.

I strongly support Linda's suggestion of Shriners. From personal experience and others' experiences, I think it's one of the best ways to go. (But that's just my opinion.)

If she's in the brace, there's not a whole lot that can be done except to wait. You don't want to jump into this surgery while she's so young. My friend had about 45 degree curves, and in several years, it went down to the point where surgery was no longer a consideration.

I hope everything goes well for all of you!

[Elisa]

Hi, I'd definitely look into contacting Shriners as well. That is the route I took when I was getting nowhere with our medical system here in British Columbia. I just wish I had known about them earlier b/c then my son would not have had to have two surgeries and halo traction but that I can't change that but I do now encourage others to contact them as soon as they can. We did have to travel down to Portland Oregon but they provided all the transportation and food etc. They are all around a class act.

Here's their website with a list of all their hospitals and what each hospital specializes in. http://www.shrinershospitalsforchildren.org/en/Hospitals.aspx

[mom to PJ]

Thanks everyone for the encouraging comments.

Elisa, I read your whole story one evening and I must say it was quite an experience. i am so glad that you were able to get the help you needed for your son and thank you for posting it all. It was so nice to see that things turned out so well for you and your son.

mamndcr - thanks for the recommendation. I will check into the clinic. I do have friends up in the Northern VA areas well.

Katie - I would love to communicate with your parents about navigating with Tricare. I am very confused about what to do since the Tricare rep said that the doc has to make the recommendation to send her out but the doc had no idea what I was talking about when I tried to discuss it with him. I have his secretary's contact info and may try to contact her as she is most likely the one in the know. Surgery isn't really even in the discussion yet for me. I am just trying to be realistic in my expectations since she is so young and has so much growing to do. On top of having the double thoracic curve.

Linda - Thanks for the suggestion of Shriners. I've read several posts containing information about them and I read on one of them that there is a very good doctor at the one in Philadelphia. I am just uncertain about when would be appropriate to contact them. Everything I've read so far points more to having surgery done there. We are not there yet. Would they do just a consultation?

Thanks again for your help!

[braceyourself]

I just sent you a PM.

Also, I have friends whose nephew just had surgery for his scoliosis at the Shriners hospital in Philadelphia. They were extremely happy with the outcome and everything went very well. As for my experience at the one in Chicago, I wouldn't have wanted to go anywhere else. So whether she has surgery or not, I think it's definitely worth looking into. (But I do also know that there are other wonderful doctors/surgeons out there too.) : )

[leahdragonfly]

Hi there,

I am sorry to hear of your daughter's scoliosis and progression. My daughter was diagnosed at age 6 so I certainly understand your concerns and questions. I definitely agree you need an outside opinion from a pediatric orthopedist who sees lots of juvenile scoliosis patients.

I would like to second the recommendation for Shriners Philadelphia. We took Leah there for a consult with Dr Betz when she was first diagnosed at age 6. I think you have gotten the wrong impression that they just focus on surgery. That is not the case at all. While they do perform spinal surgeries for many young and adolescent scoliosis pts, they are actually quite conservative and always try bracing first unless there is some contraindication. We pursued fusionless VBS (vertebral stapling) surgery (and ended up having it in St Louis due to scheduling delays) as a choice, an alternative to bracing, because my daughter did not take well to bracing, and since I was unhappily braced myself as a teenager, I had great difficulty forcing her into 9-10 years of bracing. But the choice was always ours. No pressure whatsoever towards surgery. I think at your daughter's age and current curve her chance of surgery at some point are extremely high, but I am sure that if you want to continue with bracing at this point you would not meet resistance to that plan in Philadelphia, unless there was some pressing reason to do surgery now.

I would strongly encourage you to contact the PA for the pediatric spine program in Philadelphia, Janet Cerrone, and inquire about a consultation. Janet is an extremely nice person, wonderful with kids and parents alike, and she will be able to answer some of your questions and facilitate a consultation if you desire one. She usually replies to e-mails within a few days. Here is her e-mail: janetcerrone@comcast.net

BTW, has you daughter had a full-spine MRI? If not I would push for one to rule out intraspinal causes of her scoliosis. Scoliosis in a child in her age group is not common, especially since you noted her rib hump a few years ago.

Good luck, and please let us know how things are going.

[Pooka1]

(snip) We pursued surgery (and ended up having it in St Louis due to scheduling delays) as a choice because my daughter did not take well to bracing, and since I was unhappily braced myself as a teenager, I had great difficulty forcing her into 9-10 years of bracing. (snip)

Mom to PJ,

Just to be clear, Gayle's daughter had fusionless surgery - vertebral body stapling (VBS).

No pediatric surgeon, whether at Shriners or elsewhere, only does surgery. Many, if not most, will watch and wait for smaller curves or brace moderate curves and a growing number do various types of fusionless surgery like VBS. They have to know all treatments, conservative and surgical. They are the only ones with all the training necessary to treat kids so there is actually no other place to go but to a surgeon.

Good luck,
Sharon

[mariaf]

Linda - Thanks for the suggestion of Shriners. I've read several posts containing information about them and I read on one of them that there is a very good doctor at the one in Philadelphia. I am just uncertain about when would be appropriate to contact them. Everything I've read so far points more to having surgery done there. We are not there yet. Would they do just a consultation?

Mom to PJ,

First of all, I just wanted to welcome you and offer my support.

You've received some great information so far. As you can see from my signature, my son has been under the care of the doctors at Shriners in Philly for over 7 years. I cannot say enough good things about the EXCELLENT care he has received. (We live in NY city and have decent insurance - and yet we still choose to travel to Philly for his care - speaks volumes). And, yes, they would DEFINITELY just do a consultation. I urge you to take Gayle's advice and contact Janet Cerrone - her contact info is also in my signature.

Best of luck and please keep us posted!

P.S. I totally agree with Sharon's post above. I know the title 'surgeon' understandably confuses parents, especially when their child is first diagnosed, but pediatric orthopedic surgeons are the only doctors who should be treating a child with scoliosis - and they have a whole arsenal of weapons at their disposal. In fact, in addition to bracing, fusionless surgical techniques like VBS and vertebral tethering (which is a new procedure that I believe was pioneered by Dr. Newton on the West Coast and is also being used at Shriners in Philly) show a lot of promise and are just a few of such weapons. As you can tell, guys like Dr. Newton and Dr. Betz (at Shriners) are not satisfied with just bracing or fusion. They want kids - particularly those diagnosed with juvenile scoliosis - to have better alternatives to choose from.

[Pooka1]

As you can tell, guys like Dr. Newton and Dr. Betz (at Shriners) are not satisfied with just bracing or fusion. They want kids - particularly those diagnosed with juvenile scoliosis - to have better alternatives to choose from.

Which is not to say that aren't satisfied with watch and wait which is quite effective for most smaller curves. That is to say, most small curves will not become larger curves. That coupled with the uncertain efficacy of bracing makes wait and wait the most ethical choice for smaller curves.

That is true of AIS for sure but JIS may have different trigger angles for going from watch and wait to brace or fusionless surgery.

Good luck.

[mariaf]

Which is not to say that aren't satisfied with watch and wait which is quite effective for most smaller curves. That is to say, most small curves will not become larger curves. That coupled with the uncertain efficacy of bracing makes wait and wait the most ethical choice for smaller curves.

Exactly.

It's a different ballgame for smaller curves. I was referring to curves that are at a level where some action needs to be taken - I probably should have been clearer on that :-)

[Pooka1]

Hey Maria,

I knew that your knew that.

It wasn't very clear but my remarks were directled out to others who may not have known that.

[kennedy]

i whould stongy get your daughter in the shriners hospitals system. i heard really good thinds about Dr betz from maria when we sent pms to each orther.

[mariaf]

Hey Maria,

I knew that your knew that.

It wasn't very clear but my remarks were directled out to others who may not have known that.

No problem, Sharon. Your post made me realize that my statements could have been read or taken different ways - so I, too, wanted to clarify for others who may not have known what I meant.

[mom to PJ]

Thank you! I will definitely be contacting Janet at Shriners. After looking it up it's only 5 1/2 hours away!

Leah - she did have an MRI last year and they ruled out any spinal issues thank goodness.

Pooka - both doctors that she has seen are orthopedic surgeons. I am pretty sure Shriners will suggest the same treatment she is receiving right now - bracing unless something changes dramatically. I am trying to prepare for where I believe we are headed. I am hopeful that the bracing will be effective but am anxious that she has progressed from 31 to 42 within 18 months. I know that sometimes they change much faster but she turned 10 this month and has so much more growing to do. I am mostly trying to educate myself on what options will be available should she need surgery and this forum has been very informative and has given me some direction - which is what I was lacking from the doctors.

Any suggestions on books?

Thanks to everyone for the great advice =)

[Resilience]

Mom to PJ,

I'm jumping in late due to being super busy with back to school chaos...

Sorry to hear about your daughter but she is fortunate to have a motivated mom like yourself looking into the best treatments available to her!

Of course I agree on the option of a consult at Shriners Phila. Although prior to your daughter's Scoli diagnosis you may never have imagined traveling for hours for medical care for her or anyone else in your family, it is very reasonable and common. Juvenile Scoli is uncommon. You want to have your daughter seen by someone who treats it daily, not just once in a while. We traveled from California to Phila for a consult with Dr Betz and are happy that we made the trip.

That said, we are equally pleased with our specialist in San Diego, Dr Newton (but he does not perform VBS which is why we consulted in Phila...) If it helps to know, our plan is to see Dr Betz annually or until VBS and Dr Newton for the other every 3 to 4 month appts in between.

Also, BTW, the military health system in SD refers to Dr Newton, so I am told.

You had asked about books.... for back stretches etc I really like "Curves, Twists and Bends" avail on Amazon.

I did check out some kid Scoli books from the library when my daughter was first diagnosed but after reading them myself, I didn't let her read them.

Other Scoli books are written by and for teens really. I read them for insight, but they didn't apply for my child either.

I went for novels or short books which had female characters with strength in overcoming difficulties, as recommended by teacher friends: Esparanza Rising by Pam Munoz-Ryan is a wonderful novel that I read aloud to my girls.

The other book that I read with my daughter when she was first diagnosed was about an olympic athlete who was the first negro female to win a gold medal in track, i believe. She was had polio as a child and wore leg braces, and it was a heart wrentching story of the mom believing in her and riding the bus with her for hours to take her to see doctors etc. It was a picture book, but the first that the school librarian recommended to me when I told her about my daughter's diagnosis.

Hope that helps...

[mom to PJ]

Just to update - we are headed to Philly for a Friday appointment :) We will be seeing Dr. Samdani. Janet and the staff have been as wonderful as everyone said they would be. I am trying to read up as much as possible before we head out on Thursday. We are just praying that her curve has not progressed further since her last ortho visit. I cannot describe how much I am looking forward to speaking with a doctor who can offer insight into treatment options and is willing to have a discussion.

I am not often on the boards but will try to post about our experiences there as I have found those threads with ongoing stories to be the most helpful. Thanks again to everyone for your direction :)

[mariaf]

Good luck on Friday!! You won't be disappointed -- and I can guarantee you the doctors in Philly are very willing not only to have a discussion with you, the parent, but to actually take into consideration what you have to say! (This was a stark contrast from our former ortho).

Please keep us posted - I will be thinking of you guys on Friday.

[rohrer01]

I hope all goes well for you and your daughter. Everyone on this forum seems to speak very highly of Dr. Samdani.

[mom to PJ]

WOW! You all were right on the money with Shriner's. They are unbelievably AWESOME! They do indeed take into consideration what you have to say! Janet, Dr. Samdani and all who were there were gracious, informative and inclusive. This is what I was looking for from a doctor - someone who wants to offer the information and let our family make the decisions. I got more info from them in those few hours than I have since we started this journey. Our visit was everything I had hoped for and more =)

Though we are too far along with DD curves for VBS, she is a candidate for tethering. There are several questions we have come up with since leaving that we will address on our next visit. So for now we'll continue with the brace and see how things go for the next few months :)

[Pooka1]

Glad you had a productive visit. Shriners probably has the largest knowledge bank for JIS of any organization.


There are several questions we have come up with since leaving that we will address on our next visit.

Our surgeon always answered questions that I emailed him. Maybe Samdani will do likewise.

Good luck.

[mom to PJ]

Good luck on Friday!! You won't be disappointed -- and I can guarantee you the doctors in Philly are very willing not only to have a discussion with you, the parent, but to actually take into consideration what you have to say! (This was a stark contrast from our former ortho).

Please keep us posted - I will be thinking of you guys on Friday.

Thanks Maria! I see that your son had the VBS and is doing well! I am impressed with the information on tethering but am nervous about the newness of the procedure. DD is very nervous about the possibility of surgery so we are gathering info now and we'll sit down with her again before making any decisions.


I hope all goes well for you and your daughter. Everyone on this forum seems to speak very highly of Dr. Samdani.

Thank you! I was very impressed with Dr. Samdani and his team. And I very much look forward to working with them in the future =)

[mom to PJ]

Glad you had a productive visit. Shriners probably has the largest knowledge bank for JIS of any organization.



Our surgeon always answered questions that I emailed him. Maybe Samdani will do likewise.

Good luck.

Thank you Sharon! I intend to do just that =)

[mariaf]

Hi Tracey,

I'm glad (but not surprised) that they took such good care of you in Philly!

A few thoughts -

Yes, Dr. Samdani definitely answers e-mails from parents (if you don't have his email address, please send me a PM and I'll provide it).

While tethering is very new, the results with curves that are too large for VBS have, thus far, been very impressive. I wanted to mention that if you haven't checked it out already, the VBS site (www.vertebralstapling.com) might be another good place for you. Althought it was started as a site to basically share information and support to parents seeking info on VBS (since, at the time, there was so little out there), it is for anyone with a child with scoliosis. We have several members whose children either have had tethering or are considerig it, as well as members whose children are being treated with other methods (bracing, etc.). Also, because a large number of VBS surgeries are performed at Shriners in Philly, we also have many parents with personal experience with Dr. Samdani.

Please feel free to e-mail me if you'd like more info - and again, I'm so glad your visit last week went well.

[mariaf]

Shriners probably has the largest knowledge bank for JIS of any organization.



I absolutely agree, Sharon.

[mom to PJ]

Thank you Maria =) I have visited the VBS site and am glad to see all the info. I will be looking at it more in depth hopefully today.

We have a list of questions and I think I am going to just email them to him before our next visit which is in only 3 months. We are not going to make the decision before then anyways. My daughter is starting to allow some of the info to sink in and I want to give her time to come up with her own questions for him as well. They were so good about including her in looking at her xrays and explaining what is happening. I want her to be as much a part of this decision as possible. The thought of at least 4 more years in a brace with a curve that continues to progress is not very attractive to her so she is opening up to the idea of surgery a little more.