Help?

[Esa]

I'm freaking out a little at this point, so please forgive me if I ramble. My daughter Jasmine (9) was diagnosed when she was 1. We've been bracing and casting since. Recently I learned more about VBS and was looking into that for her. Unfortunately she wasn't a candidate for that. But today her doctor recommended growing rods. Her upper curve is at 47 and lower is 33 currently, and he said that more then likely if we continue to brace she will need to be fused in the next 2 years. If we do surgery it might put it off for another year after that. I'm freaking out that we're so close to her needing to be fused and I'm freaking out over the growth rods. He said he wouldn't recommend VEPTR due to a lot of complications that have errupted over the last few weeks for other kids. Plus Jas is so small (3'9" and 42 lbs) that he's worried about how the VEPTR would effect her ribs. Does anyone have any insight into growth rods? Recovery time after surgery? I have a million questions and can't get them to come out in coherent sentences, maybe if anyone can just tell me what they've been through that would help.

Thanks!

[rtremb]

I thought VEPTR is the same as growing rods. Here is a VEPTR website another forum member posted which I was able to find.

http://www.veptr.com/wiki/Home.ashx

I don't know much about this but thought this website might help?

Ruth

[Susie*Bee]

I don't know much about this at all, but do remember there was a mother who posted a couple of months ago about her little girl's surgery, and I'm sure it was with growth rods... I remember how pleased they were, and that the little girl did so well. The mom had put together a scrapbook/powerpoint type thing, with a link to it, chronicling the whole time at the hospital, etc. They are from England, I'm pretty sure. Anyone know who I'm talking about? If so, Esa could try to connect up with them to find out more... Plus seeing the pictures, how small and sweet the little girl was, and all that might help. Best wishes for finding the information you need-- and for your daughter's surgery.

I just searched and found the post I was thinking of -- and the link to you tube... the little girl's name is Naomi. :)

http://www.scoliosis.org/forum/showthread.php?p=55278#post55278

Hope this helps a little.

[Nutty]

Hola

Please try not to panic, although I do understand why you would!

I have information about the Veptr rods on my website and I found the following link for you.

In recent years, the VEPTR device has gained further recognition in the orthopedic field. Rather than approaching the conditions of respiratory insufficiency at the spinal level or through ventilator support, the VEPTR device seeks to expand and support a deformed chest wall cavity through the use of telescoping titanium rods. These rods hook directly on to the rib cage or pelvis and help to separate and support the chest, giving the lungs room to operate and grow.

In the case of scoliosis, and to a lesser degree kyphosis, the unattractive option of a spinal fusion is avoided, the leverage is instead placed upon the rib cage. In the other instances of collapsing or constricted chest walls, and spinal growth complications such as seen in Jarcho-Levin, the rods serve to help expand the chest to allow for the child to continue to grow and breathe. In many instances, these children's symptoms and conditions can be slowed, halted, or even reversed!

As miraculous as the procedure may seem, the device is not suitable for every case. For example, older children and adults would not experience the same level of benefits, as the VEPTR implementation is designed to target the orthopedic challenges involved in treating these conditions on a growing body over time.

Additionally, and as with any surgery, a patient should be medically stable enough to withstand the rigors of invasive surgery. Furthermore, various levels of complications often arise after the surgery, due to the nature of the implementation. All these factors must be carefully weighed before the decision to undergo VEPTR installation is made.

In this spirit, we feel it is best for the dialogue between parent and physician to be as bilateral as possible. While you aren't likely to gain a medical degree in order to speak with your child's doctors on equal footing, it is important to arm yourself with as much information as possible. With knowledge comes understanding, and with understanding often comes hope. Please keep in mind that this material has been prepared with the help of other parents faced with similar situations, we do not possess professional medical credentials, and under no circumstances should any information presented here be considered medical fact-- rather it is the operation as viewed by us. Every situation is unique and consultation with your child's physician is required.

http://www.or-live.com/NYP/1778/index.cfm?source=rss

I hope that helps and my thoughts and well wishes are with you :)

[flowerpower]

A good person to talk to would be Carmell, she is a wealth of information on this stuff. She is on here periodically. If you look around I'm sure you can find a post from her with her email info. Good luck to you-

Renee

[Carmell]

Hi Esa,

Don't panic. There are many differences between growing rods and VEPTR rods. Knowing which one to use for a specific child (they are all unique with unique issues) is critically important. The recent information about rib damage is *ONLY* if the surgeon does a thoracotomy incision. This creates scar tissue. MOST VEPTR patients do not require thoracotomy incisions. The ONLY hospital doing thoracotomy on all VEPTR patients (idiopathic and congenital, both) is Santa Rosa in San Antonio, where the VEPTR was invented. The other surgeons (including Dr. Smith at PCMC in SLC) do not do open thoracotomy incisions unless absolutely necessary. When the VEPTRs are placed - with no thoracotomy - there is no potential damage to the chest/lung function. There is potential BENEFIT because the devices stabilize the scoliosis and support the spine and chest.

Growing rods are placed directly along the spine, attached (fused into place) at the top and the bottom ribs just beyond the curve of the spine. Both growing rods and VEPTRs need to be surgically lengthened every 6-8 months as the child grows. Jasmine is a small statured kid, but, most VEPTR/very young scoliosis patients are.

VEPTR rods are placed away from the spine, allowing the spine to grow as normally as possible (given the curve and natural makeup of the spine). Growing rods have been known to promote premature natural fusion of the spine between the rods, because of the friction/movement of the bone against the rods. Any stimulation of the bones cause bone growth to occur, which can lead to fusion before you want fusion done. VEPTRs do not do this.

Have you had a consultation with Dr. Smith at PCMC? If not, I suggest you do, before agreeing to growing rods. I'm assuming you have this recommendation from Shriners in SLC. Dr. Smith has done more VEPTR implants than any surgeon, except San Antonio (again, where the device was originated). Dr. Smith can discuss with you the pros and cons of both growing rods and VEPTRs in Jasmine's case because of his extensive experience. He has done both growing rods and VEPTRs - again depending on the child's need.

Good luck. Email me if you want. boulderfam@hotmail.com

[mariaf]

Hi Esa,

Everything Carmell said makes perfect sense (no surprise there).

I did want to ask/mention one other thing. I know that the doctors at Shriners in Philly recently started performing VBS and VEPTR together in cases where they felt VBS along would not work (generally in larger curves such as Jasmine's). There are apparently benefits to having the staples in addition to the VEPTR in these cases.

There was also one child recently who did not qualify for the VEPTR (I believe because she did not have any compromise of the chest cavity?) - so they did a growth rod together with VBS. This child also has only a couple of years of growth left so she will only need maybe two "lengthenings" and then they plan to most likely remove the rod and have the staples remain for extra stabilization of the curve.

When and where was your evaluation for VBS and was this option mentioned to you? (As I said, it only started to become part of their program over the past couple of months).

Please post or email me if you have any questions about this or if you want to find out more about it.

[Esa]

I can't begin to express just how grateful I am to have all of you to talk to, I'm doing a bit better now. We have scheduled a consult with Dr. Smith up at PCMC. It's set for May 20th. They squeezed us in since he was booked out till the end of June, and that was when we were possibly looking into doing the surgery. Dr. D'Astous (Shriners SLC) has been Jas's doctor since she was diagnosed at 1 year old. Back in January I started looking into VBS and had xrays and her records sent back to Dr. Betz in Philly to see if she would be a candidate, which unfortunately she wasn't, Janet said it was due to her curve being so severe and also it looked from the xrays like she might have soft bones. We went to Shriners here in Salt Lake earlier this week to get an adjustment made to Jasmine's brace (she was having a hard time sitting for long periods) and Dr. D'Astous recommended she have the growth rods placed. At this appointment his care coordinator Angie said something about them having a lot of problems with kids who have had VEPTR over the past couple of weeks and that was why he wasn't recommending it. Also because Jasmine is so tiny and the possibility of her having other bone issues. I just don't know what to do, I don't know what decision to make. Jasmine is also getting reverse pull head gear this summer to help correct a severe under bite that she's developed as a result of her cleft palette. I'm just so frustrated since she's already been through so much. I wish that I could wave my magic wand and make all of it go away. She's already been through so much and is such an amazing child, I just don't want to put her through any more crap. But I know we have to do something or else she's going to have to be fused by the time she's 11. I just hope we make the right decision of what's going to be best for her. Right now I'm waiting to see what Dr. Smith recommends (I have a good feeling, call it mothers instinct, about going to see him) I had not heard nor was the combination of VBS or VEPTR mentioned when I spoke with Janet. I think it might not work for Jas, her spine seems to be getting more and more stiff. Even in the bending xrays her top curve only went down to a 38. (this was mentioned as part of the reason why she doesn't qualify for VBS)

[mariaf]

I had not heard nor was the combination of VBS or VEPTR mentioned when I spoke with Janet. I think it might not work for Jas, her spine seems to be getting more and more stiff. Even in the bending xrays her top curve only went down to a 38. (this was mentioned as part of the reason why she doesn't qualify for VBS)

Hi Esa,

I'm glad you are feeling better about things and I think it's a very good thing that you are seeing Dr. Smith soon.

I just wanted to mention that if you spoke with Janet more than two months ago, that might explain why the VEPTR/VBS combination wasn't mentioned. If I am correct, they only started doing it recently - in the past few months. If you spoke to her more recently, then I guess there was some other reason why she did not suggest it for your daughter.

My son, too, will be getting headgear to wear at night soon for his teeth. My dentist mentioned something interesting when I brought up the fact that David DEFINITELY needs orthodontic work as his teeth are all crowded, in the wrong places, etc. She said that sometimes she sees this (meaning kids whose spines perhaps don't develop properly also have problems with the development of their teeth). Anyone else find this to be true??

Esa - good luck and let us know what Dr. Smith says!

[Esa]

Maria,

I hadn't heard of the scolio and teeth combo problem before either. With jas, they have always supposed it was only due to her cleft palette since teeth problems are so common with kids with clefts. Maybe the combination has to do with the fact that they both have to do with bones?

Jasmine has already had 6 teeth pulled (last June, the tooth fairy took a big hit on that one!) And will have to get more pulled in the future, she'll also definitely be doing braces eventually, but that seems small compared to everything else!

As for the VBS and VEPTR combo, maybe I'll email Janet again, and also bring it up with Dr. Smith to see what everybody has to say.

Thank you for all of your help and support!

Melissa

[mariaf]

Hi Melissa,

David may need to have a few baby teeth pulled also. BUT, his older brother had to have some pulled as well so I'm not sure if it's related to David's scoliosis or not. In fact, as I said, I hadn't thought about the connection between scoli and teeth until our dentist brought it up - and yes, the fact that they are both bones makes sense that there could be a connection.

Also, I know they measure how much growth is left by looking at bones (Risser) - I also read recently that kids who lose their teeth late (David falls in this category) will have their growth spurt late - David is kind of small for his age but his brother and dad are tall so I'm guessing he has a LOT of growing left to do but that he'll just be a "late bloomer".

Take care,

[emma12]

Interesting to hear the comments about the teeth related to scoliosis possibility, I had never heard that before. But, my daughter lost her baby teeth late (4 had to be pulled because the adult teeth were coming down and out around them, and they would not loosen on their own). Needless to say, she's in braces now (at 12 1/2), this is actually phase 2 of the braces. She had them first at about age 7 for a year, just on the top. We always just thought (and were told) that her teeth were too big for her jaw, excessive crowding... For those that may not have seen my other posts here and there, she had fusion last August. So I wonder if there is some connection???

[mariaf]

Emma,

David's teeth, I'm told, are also too big for his jaw and he has excessive crowing.

Hmmmmmm

[Nutty]

How very interesting about the teeth and scoliosis, I have never heard of a connection before and reading through these posts I am learning so much!

A search on PubMed may show results of some papers that were carried out looking at the connections.

All the best to your family :)

[CHRIS WBS]

I too experienced the crowding teeth problem. However, it’s not that the teeth are too big for the jaw. The jaw just never fully develops to accommodate all those teeth. After wearing braces on and off over a 20-year period because my teeth kept re-shifting to their original position, I found a fabulous dentist who did a lot of restorative work on my teeth when I was in my late 30s. He told me that my jaw was to blame. It just never fully developed. So after restoring my teeth, I had one of two choices. I could have surgery on my jaw to extend it or wear a retainer; otherwise, my restored teeth, crowns and all, would shift again. I decided to wear a retainer which I still do a few nights a week and it has kept my teeth aligned.

[Singer]

This is soooo interesting about the teeth! I was missing two permanent teeth on my top jaw and even after having two permanent teeth pulled on my bottom jaw (and tons of dental work) I still have major overcrowding on the lower jaw. My dentist told me last year I'd probably need braces again at some point and I just laughed at him (it was right before my surgery).

Makes sense that our whole infrastructure would be off.

[ARN010]

My daughter (10yo, 50 deg rt thor curve; post fusion scheduled for 5/21/08) also has a dental nightmare. She has been in braces top and bottom for a couple years, her palate was widened (3 turns a night something like that) and now she has a gold chain surgically implanted around a tooth that is growing at a 90 deg. angle under her 4 front lower teeth. They are pulling it into position and it may require 1-3 more surgeries before it's done. I have often wondered if the two were related. She does, however, have a gorgeous set of teeth even with the braces and after many thousands$$$. I hope her back will be equally as gorgeous (well it's already cute) I mean equally straight all parts in their places.

[Nutty]

Hola

Sorry to hear about your daughter and her teeth troubles, she sounds like a proper little trooper. I feel for her as I cannot stand going to the dentist, I am such a girl when it comes to all that!

I am currently having Bowen therapy to help treat my Scoliosis (had surgery in 1989 for harrington rod) as I have been getting increased pain over the past few months, anyway, I asked her about the jaw and teeth and she said that she thinks they are related and that she always checks the jaws on her scoliosis patients, fortunately I have a good jaw line and it appears to be very good, I have not had a history of bad teeth problems (got enough going on already ;) but I do find all these connections interesting.

Best wishes to your daughter and her up-coming treatment :)

[terri watkins]

My son was born with a cleft palate, severe crowding of the teeth (2 surgeries to remove numerous teeth in the past. He is on his 2nd set of braces now trying to move two teeth from the center of the roof of his mouth to spaces made available during surgery. He wears a appliance to continue to stretch the roof of his mouth. He has had teeth grow inside his lip and even one had to be removed from his nose. The Dr said that it was due to twisting the roots of his baby teeth during his cleft palate repair at 1 yr old. And lets not forget the scoliosis diagnosed at 7. Been bracing for 7 yrs now with surgery scheduled next Tuesday.
Esa it's a long rough road having a child with numerous issues. My heart breaks for my son and any child that has to endure this. I am told it's all for a purpose, one I am sure I wouldn't be able to understand.
I wish you all the best and pray that you will be lead to the answers you need. I know Maria and Carmell have been a anchor in this storm for me. Thanks Ladies!

[terri watkins]

I ran across this poem in a book the other day. It reflected my situation and the comfort I have found through the folks on this forum.

Lend me your hope for awhile, I seem to have mislaid mine.
Lost and hopeless feelings accompany me daily, pain and confusion are
my companions.
I know not where to turn; looking ahead to future times does not bring
forth images of renewed hope.
I see troubled times, pain filled days, and more tragedy.

Lend me your hope for awhile, I seem to have mislaid mine.
Hold my hand and hug me; listen to my ramblings, recovery seems so far
distant. The road to healing seems like a long and lonely one.

Lend me your hope for awhile, I seem to have mislaid mine.
Stand by me, offer me your presence, your heart and your love.
Acknowledge my pain, it is real and ever present.
I am overwhelmed with sad and conflicting thoughts.

Lend me your hope for awhile; a time will come when I will heal,
and I will share my renewal, hope and love with others.

[txmarinemom]

Interesting to hear the comments about the teeth related to scoliosis possibility, I had never heard that before. But, my daughter lost her baby teeth late (4 had to be pulled because the adult teeth were coming down and out around them, and they would not loosen on their own).

How funny ... my bottom, middle four baby teeth were extracted at about age 6-7 because I had two permanent teeth erupted behind them (shark alert!), and the other two were visible - apparently about to erupt - on x-ray.

The middle two came in fine ... the side two took their time moving up and forward, so of course I had fangs (they came up in front of all the "normal" teeth) and required braces.

Then again, one of THE cutest guys I knew from high school wore braces for 6 years - until he was close to 21. His baby teeth just refused to fall out. As far as I know, there were no other health issues.

Baby teeth that hang on aren't really all that uncommon.

[mariaf]

Hi Pam,

Sounds like you and David have a lot in common "teethwise" - he has two permanent teeth (on top) coming in behind some baby teeth that REFUSE to come out (the orthodontist didn't want to pull them just yet because she is hoping his jaw will grow (if I understood her correctly - I think I did) and the more teeth he keeps in his mouth, for now, the better.

I also laughed at what ARNO10 said about her daughter being a "dental nightmare" - reminded me of David!

Terry,

David's top teeth are also coming through the roof of his mouth, behind his other teeth. The orthodontist said she did not think any surgery would be necessary, that they could bring them forward with braces, rubberbands, etc. AFTER they make room (I know it will be a long road). He will also start at some point to wear night headgear to bring his jaw forward, etc. I am so happy that we have an excellent orthodontist who my two older kids also went to, although their teeth weren't nearly as bad. They've been watching David for some time and have a plan. It breaks my heart that he has to go through MORE, but other than getting him a good orthodontist and being there for him, I guess there's not much more I can do.

We actually have our next visit with the orthodontist tomorrow - If I learn anything of interest I will post :-)

[jillw]

At 7 Katie is also already an orthodentist patient! Her jaw isn't big enough so she has been wearing a palate expander for almost a year (although we aren't currently doing adjustments, its acting more as a retainer for the expansions we did over the first 3 months).

She's lost 4 teeth so far and in every case her permanent teeth were already well on their way before the baby teeth came out and it looks like a couple more permanent teeth are about to erupt even though the corresponding baby teeth don't yet look like they are going anywhere....I never got to see my daughter "missing a tooth" because the replacement was always almost fully in! Needless to say, her teeth are growing in much more crooked than her classmates who actually lose a baby tooth first (or at least very shortly after the permanent tooth starts to erupt). hmmm....