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Resilience
11-04-2010, 11:58 PM
I am heartbroken and wonder how other moms have survived this?

My daughter inherited Scoliosis from me. It is disrupting her life at a much younger age than mine did. Clearly she has a long road ahead of her, we both do. She currently has a two 27 degree curves in an S shape. She is very flexible and athletic and has been prescribed a TLSO to be worn 18 hours a day.

My scoliosis was diagnosed when I was 13 and I wore a Milwaukee brace for 3 years full time and have horrible memories of it.

I am usually a strong person but currently I feel like I am living a horrible nightmare. I'd appreciate any advice from parents who have "been there."

Thanks,
Resilience

jrnyc
11-05-2010, 12:59 AM
hi resilience
welcome to the forum...there are many caring, kind people here, with stories & experiences to share, recommendations based on their own difficulties with this condition and related problems...and shoulders to lean on...people of all ages and walks of life...

i sent you a private message...

best of luck...
jess

mariaf
11-05-2010, 01:37 PM
Hi Resilience,

I have 'been there' and my heart goes out to you. You will see from my signature that my son was braced for a few years when he was very young and that he had VBS (stapling) in 2004. Like your daughter, he is very athletic (plays basketball and baseball, his true passion).

The good news is that there are new breakthroughs in scoliosis treatment all the time -- even juvenile cases, which for a long time did not get the attention that adolescent cases did.

Hang in there. No matter how strong we are, it's never easy to see our babies go through something like this.

Feel free to e-mail me any time.

Hugs,

Resilience
11-05-2010, 02:05 PM
Thank you. I will.

jillw
11-05-2010, 04:20 PM
Resilience,

Your "name" says it all - that is how you all will get through this. I empathize with your heartbreak - I was there 3 years ago (see my signature below). I noticed the time you posted this message which makes me guess that you are having trouble sleeping because of what is happening to your daughter. (I never pulled an "all nighter" while studying in college...it wasn't until my daughter was diagnosed with scoliosis that i spent the entire night awake trying to find all the information on it that I could; i couldn't sleep anyway so i thought i'd be productive). For me it was like the 7 stages of grief (shock and denial/pain & guilt/anger, sorrow - mostly sorrow). I can't say that I'm totally at acceptance, but things are definitely way way better!

How much does your daughter know so far? My daughter was almost 7 when she was diagnosed and I was heartbroken because i knew she had such a long road ahead of her but also because i couldn't even begin to imagine how i was going to convey the whole concept of bracing to her.

I broke it to her in bits and pieces. She knew she'd be wearing a brace...a few months later she asked for how long. I told her that the doctors would tell us that (but that we were next going to the doctor in 5 months) , then as she asked more sophisticated questions she got more detailed answers (eventually i told her she'd be wearing it as long as she would be growing so it would be for a while and as she got older she came to the conclusion that it will probably be at least until she is 15 or so...but it took her a couple years to get there and by then she had adjusted to life in the brace).

I had a friend who wore a Milwaukee brace like you did. The brace was awful - like a torture device (albeit a needed device). I believe the TLSOs are so much better than what you had to wear so hopefullyit won't be as hard for your daughter. Also, since she "only" has to wear it 18 hours (I know, 18 hours is a lot, but its better than 23 hours) it gives her a good 6 hours for her activities. The downside is that it doesn't give her enough out of brace time for both school and whatever physical activities she does after so she'd probably have to wear it to school to free out of brace time for whatever athletic activities she is in. You will quickly find out the best way to manage that out of brace time.

I know every child is different, but the cosmetic aspect of wearing a brace didn't bother my daughter at first (it is starting to now that she is getting older and it will only get worse, but when she was 8 she still didn't care). Is your daughter in 3rd grade? I think the kids at school are still very accepting then. With my daughter I came in to the school with her when she first got the brace and the teacher arranged for a Q&A session with her classmates. That way EVERYONE knew what it was for, that she was still the same girl, that it wasn't contagious, etc. The kids were curious and enthusiastic and I felt so relieved after that. (I realize we'll have a new set of challenges when she hits middle school where there will be a large new group of children who don't know about my daughter's scoliosis-but one day at a time, right?)

Finally, as Maria stated, there are beginning to be more options for scoliosis treatment. If a TLSO doesn't work for your daughter (physically or emotionally) there may be other options - it's good to know there are options other than 22 hours in a milwaukee brace. There's lots of info on these boards and elsewhere. Good Luck! Let us know how its all going.

Resilience
11-08-2010, 08:26 AM
Jill,

Thanks for your support and words of encouragement. I am trying to be resilient, although this is one of the most difficult challenges I have ever had. That said, I believe that life is 10% what happens to you and 90% how you handle it. Our goal as a family is for this to not define who she is, just be part of it, and for her to reach skeletal maturity with her confidence intact.

How much does my daughter know? She knows that we'll be picking up her brace sometime this week, then the follow up apts before Thanksgiving, the wean in period, and then the plan for routine follow ups every 3 months which will guide the route from there. I was honest but didn't feel the need to discuss all of the if this then that options in detail. We don't know, and she would worry about the unknown.

Thanks, also for your insight in addressing my daughter's class. I'll do that on Wednesday and I'm nervous about it. (I want to be strong but fear that I will cry.) It's good to hear that you felt better after addressing your child's class.

Thanks so much for the support. I truly appreciate it.

mamandcrm
11-08-2010, 05:19 PM
G also did a "show and tell" when she got her full time brace in 1st grade. I did not go with her but I had a lot of trust in her teacher. It was very uneventful. The kids asked some questions which G described as "some were stupid and some were fine". None made her feel self-conscious. It was her 5 minutes of fame, and then it was done. No one ever mentioned her brace again. At this age, kids don't focus on the cosmetics.

Resilience
11-11-2010, 10:01 AM
My daughter and i shared her XRays with her class yesterday and it went really well. I think it was helpful for the kids to see the curves on the films since to look at my daughter, she looks balanced and perfect! They had great questions and we talked about their experiences with braces and XRays.

I brought home the point that my daughter wants to be treated "just the same" once she starts to wear the brace to school. The teacher and class commented that they plan to treat her with respect. My daughter and I both feel a relief after addressing her class.

More tough times to come, but today we feel good!

jillw
11-11-2010, 05:29 PM
Good! Glad it went well. Was she wearing the brace or do you still need to pick it up? Good luck!!!

Resilience
11-12-2010, 11:32 PM
We pick the brace up on Monday afternoon and we have her first in brace X-Ray the day before Thanksgiving.

Resilience
11-18-2010, 02:14 PM
So we've had the brace since Monday and despite a few tears when the orthotist first put it on her, she's been amazing! We are weaning in by 2 hours per day so today we are up to 8 hours and she wore it to school for the first time today: her choice, I was thinking the first day to wear it to school would be tomorrow, but I followed her lead.

michael1960
11-21-2010, 03:43 AM
Hi Resilience

Congratulations on your daughter wearing it to school. You must be very proud of her. I know in the beginning with my daughter we had to have a lot of discussions around why it is so important to wear the brace.

Just a few thoughts/comments based on my daughter starting with our first brace around 8yrs old.

1. Do you know the in-brace correction? Have you had a chance to get that measurement yet? The reason I mention it is that out of brace correction is very dependent on in-brace correction. I have read that it is important to get at least 40% or more to get any curve reduction (out of brace). I will need to find that % again. But it is very important. My daughter went from 30 degrees out of brace to about 20 degrees when she was first fitted. They felt that was not good enough so they made some adjustments and got it down to about 13 deg. Today she is closer to about 5 deg. It is not comfortable, but she has grown to deal with it. My daughter wears two different braces so the hard brace she only wears about 8-10 hours per day.

2. Are you meeting with a VBS doctor? I apologize if you have mentioned it already. Your daughter is in the VBS range. If she was to reach 35 deg she would move out of the VBS range into the VBS with hybrid rod. It is so important to manage it and keep it below 30-35 degrees. Initially we missed the opportunity for VBS only (staples only).

My daughter's curve progressed from 23 to 36 in 3 months when she was not wearing a brace and it made her a VBS with hybrid rod candidate because she was over 35 degrees. Fortunately you have your daughter in a brace much sooner than my daughter.

I with both of you the best. Good luck.

Mike

Resilience
11-25-2010, 12:09 AM
Mike,

Thanks so much for sharing your experience. Greatly appreciated.

My daughter just had her follow up yesterday. The orthotist added more foam inside the TLSO and tightened the brace so tight that my daughter was very uncomfortable. They then took the in brace X Rays which look virtually straight and Dr. Newton was very pleased. My husband took her to the appointment this time and said they didn't give an in brace curve measurement, just that the in brace correction was great. Honestly, I expected great in brace correction because my daughter is very limber and I am happy to see the in brace X Ray, but she is quite uncomfortable now with the brace modifications. She's slept through the night but today was the first day she was not wanting to wear it and when we took it off she has redness where the extra foam was added inside the brace. I'll see how it goes over the Thanksgiving weekend and we may have to follow up with the orthotist next week.

I am curious about the in brace correction measurement too and will get the radiologist's report next week after it's dictated etc. I am compiling a file to send to Shriner's in Philadelphia for review of her case re VBS. If they indicate that she may be a candidate for VBS we could make a trip to PA sometime in the future.

After her discomfort in the brace today I am more interested in your style of management with SpineCor during the day and TLSO at night. Nobody in San Diego prescribes SpineCor, we'd have to go to LA and most likely to a chiropractor. I'll have to research it further.

Again, thanks so much for sharing your experience and advice!

michael1960
11-25-2010, 09:11 AM
Hi Resilience

I am happy to hear about the in-brace correction. In brace correction is very important to get the curve to reduce over time. The greater the in-brace correction the greater the potential reduction (but no guarantees).

The brace on my daughter is very tight. She has been in it for 8 months so she is very used to it now. In the beginning, early months, she would toss and turn all night, sometimes wake up crying. I used to sleep with her so that I could be there for her, and sometimes loosen the brace if necessary. But in the morning she would never remember it. Over time she became better and now sleeps all night. Every morning I would inspect it and look for red spots. They can get bad, especially if wearing the brace 23 hours per day. Needs to be monitored very closely. The brace itself is uncomfortable, but the red sores can really hurt. I always talked to my daughter about "uncomfortable" vs "pain". I expect her to endure some level of being uncomfortable. But she should not have to endure pain.

And some places where the brace hurt her, like in the chest area, we added a little bit of foam, and it helps her. It does not impact the brace, but takes away some of the pain.

The advantage of the SpineCor is that my daughter wears it during the day, so any redness that develops overnight is gone by the time she goes to bed again and puts on the hard brace. So it has never been an issue. My daughter loves the SpineCor, in comparison to the Boston brace. I would prefer that she wear the Boston brace more. Right now she is doing it only at night, so about 8-10 hours at most. The rest of the time she is in the SpineCor brace. I look at her back almost daily when she removes her brace. I like to look at the spine to see how straight it is. Surprisingly, it looks straighter when she takes off the SpineCor, not sure why. But I am investigating that. But I do know that she gets much more correction in the Boston brace.

I like the SpineCor for these reasons:

1. She gets good correction (but not as good as the Boston brace)

2. She can wear it to school, play sports, after school with friends, etc.

3. While it can be a bit inconvenient going to the bathroom, my daughter just removes it completely and puts it back on all by herself. It has never been an issue.

4. And there is no issue or problems with people at school saying anything to her about wearing a brace. Probably not a big deal at 8 or 9, but when they get older it could be an issue.

5. I am a supporter of the theory that the SpineCor allows the spine to be straighter AND it allows the muscles to continue to develop. Also, it allows the rest of the body to continue to grow normally. Need to be careful with a hard brace, especially very tight, impacting the growth of other parts of the body, like the development of the ribs.

I like the combination, not only for the results, but for my daughter to have no issues with wearing the brace. Yes, uncomfortable at night, but other than that, she lives a very normal life. She puts the SpineCor brace on in the morning as if it is just part of getting dressed: under clothes, SpineCor brace, outer clothes. Just one more layer to put on. We had to buy some new clothes to make sure the straps were hidden by her neck.

She started off to school one day, crying, and I asked her why, and she said people could see the strap. So we grabbed another shirt that hid it, and the tears were gone.

But, I do believe she should be in the Boston brace (hard brace) more. I would prefer that she was in it from about 5 or 6 PM to about 8 AM. So, more hard brace.

It is great news you are getting very good correction. You want over 50% at least, and more if you can get it. At our last x-ray (June 2010) she was probably about 18-20 deg out of brace (down from 36 deg October 2009), and 3-5 deg in the brace (when it is very tight). I assume she is closer to 10-12 in the SpineCor brace.

I hope this is helpful. There are almost no studies on the effectiveness of any type of bracing for juveniles (6-9) and there is absolutely no studies for a juvenile wearing two braces. I would assume every doctor, chiropractor, and orthotist will tell you that it will not work. But, The hard brace providers will tell you why SpineCor does not work, and the SpineCor providers will tell you why a hard brace does not work.

Please feel free to ask any questions. Your daughter is probably safest in a hard brace, at least with respect to stopping and reversing curve progression. However, we have to allow them to enjoy school, time with their friends, and play sports. The hard brace can sometimes make this a challenge.

One very good point is that my daughter is in a brace no less than 23 hours per day, with no complaints.

Good luck. Ping me anytime. If you want to chat through email or on the phone just send me a private PM. I know what you are going through. We are about one year ahead of you.

Mike

leahdragonfly
11-25-2010, 10:11 AM
Hi there,

I have been following your daughter's story but haven't had a chance to post yet (I am recovering from recent scoli surgery myself). Welcome to the group, and I am so sorry to hear of your daughter's diagnosis. I think is somehow harder for us who had scoli during childhood to see it crop up in our beautiful children. It was certainly a huge heartbreak for me, and I cried literally every day for a month when my daughter was diagnosed at 6 y/o.

It sounds like you are true to your name, and so is your daughter! She is doing so well with early bracing, which is great, although not always easy.

We chose to fly to Philadelphia (from Oregon) for a consult with Dr Betz, and it was well worth the trip. If you are interested in this option, I would suggest sending an e-mail to Janet Cerrone, the spine program PA. She is extremely knowledgeable as well as genuinely nice, and usually responds within a few days. Her e-mail is janetcerrone@comcast.net. You can tell her about your daughter and tell her you'd like to come for a consult, and she can help facilitate the process.

We were interested in VBS but my daughter was too young at age 6, so we braced her. When she was 8 the time was right for VBS, but at that point Shriners had a long wait list in Philly, so we were able to get transferred to Shriners St Louis. My daughter had VBS in May with Dr Luhmann, who is absolutely wonderful. He has done over 40 VBS surgeries which is probably the largest number outside of Philly. My daughter did great, and her curve is now in the mid-teens (down from 30) at 6 months post-op. She is thrilled to be brace-free.

I don't know if you've had a chance to check it out, but there is a website www.vertebralstapling.com which contains lots of VBS info, as well as a discussion forum you can join to learn more. There are a lot of parents of children there who have had VBS as well as many who are considering it.

Good luck, and please let us know how things are going. Your daughter should adapt to the new tightness of brace over the next few weeks, but it's never a bad idea to check with the orthotist to verify the fit.

Resilience
11-29-2010, 11:35 AM
Mike and Gayle,

Thank you both for your voices of experience. Discussing the differences between tight, uncomfortable and pain with my daughter has been helpful.

I am compiling info to send to Shriners in Philadelphia for review. I'd like to read more about long term data on VBS. It certainly sounds appealing.

Right now I am drained with where my family and I are at in this process. My daughter is having her ups and downs. We've found that she has less redness on her anterior rib area if she sleeps on her back in the brace compared to trying to sleep on her tummy, which she would prefer. This has led to disrupted sleep for the whole family as we support her through this. Since the brace adjustment my daughter has been able to resume her love of monkey bars in brace so she is very happy about that and I am thrilled that she can participate in this activity with her friends again at recess.

My older daughter is having some hurt feelings as so much attention is given to her sister, so I am making special time for her.

I always felt that my life was busy enough as a working mom. Now I feel like I have another huge commitment to add to my list; it's taken top priority actually. Thanks for listening. I appreciate having found this forum and people going through this process with their children.

Resilience
01-03-2011, 05:44 PM
update for the new year:

We have compiled my daughter's xrays and doctor's notes and have sent them to Shriners in Philadelphia for review re VBS. Waiting to hear back.

Day to day is ok with the brace, some skin irritation and some negotiating on my daughter's part to have time out of it. expected. We are using the special undershirts, Hydrocortisone Cream, Aveeno bath wash and baby powder. Any other advice? We have an appointment with the Orthotist this week to see if he can create some air holes.

She continues to do swim team and we've incorporated an exercise routine based upon core strengthening, torso rotation and stretching.

She asked me the other day about how long she will need to wear it, I cowered out of it by saying we don't know, will have to see what the doctor says at the next visit and go from there. I don't want to keep the full truth from her, yet so many unknowns, and she's so young, how can she wrap her head around "until she reaches skeletal maturity unless she requires surgery prior to that?" Or we elect to go the VBS route if she qualifies.

Looking for guidance in how you've dealt with your children through all of this, being so young, how much information should I share with my daughter?

Thanks NSF for having this forum. Very helpful.

mamandcrm
01-03-2011, 06:55 PM
Hi Resilience,

Every kid is different and you know your child best. For us, we told our daughter the full truth from the get-go and she dealt with it fine. When we didn't know, we said we didn't know, what we did know, we told her, if she asked. The only tears she had was over the prospect of having VBS which we considered, and rejected for a couple different reasons. We felt what was best for her was to know she could trust us, no matter what--to tell her the truth, to always do our best for and protect her, to support her, and that it was going to be OK, whatever happened. She was 7. That was what she needed. Good luck with your VBS appointment. If rashing is a problem, we found in the beginning that spray-on hydrocortisone worked well (let it dry before putting the brace back on). Lotions can create additional moisture and irritation. Our orthotist advised us to use corn starch, no baby powder, though we've not needed it. With the RC brace, my daughter could have tons of ventilation holes in her brace with no adverse consequences. I don't know about the Boston brace.

mariaf
01-04-2011, 08:34 AM
Hi Resilience,

I’m glad you’ve sent everything off to Shriners. I know that Janet was out on vacation last week, yesterday was her first day back, so you might want to follow up with an e-mail or phone call to make sure she received everything. I also know that she isn’t bothered by ‘reminders’ from parents.

I’m not sure about whether or not the air holes would compromise the integrity of the brace or not (sorry) – at least the weather is cooler now. I found that bracing and summers are not a very good fit. David was always so hot that we tried to keep him indoors in air conditioning as much as possible. Luckily, he was braced when he was younger so it was MUCH easier than it would be for him today being an active 12 year old who is constantly outside riding his bike, shooting hoops, playing baseball, etc. I know all too well, from my experience and that of others, that most kids will definitely try to negotiate for time out of their brace.

As for surgery, David was 5 when we looked into VBS and from what little he could understand, he was not at all fearful of having it - and looked forward to freedom from his brace. I tried to be honest, while keeping things on a level a 5 year old could understand. I told him to expect to feel crummy for a few days after surgery (like when he’s home with the flu, etc.) but that mommy would be with him the entire time and they’d take very good care of him. If you seem calm and confident about things, your daughter will follow your lead and be more relaxed. He did great with the surgery and recovery – and after a few weeks there was no keeping him down and he had put it all behind him pretty quickly. He does happen to be an easy-going, roll-with-the-punches kind of kid :-)

Best of luck and please keep us posted. If there is anything I can do, or if there are any more specific questions I can answer please feel free to ask – and feel free to email me any time as well.

leahdragonfly
01-04-2011, 10:16 AM
Hi resilience,

Like Chris above told you, you know your child best and know how much to tell her. In my personal opinion, I always try to tell my kids the truth in a way that they can understand and is age-appropriate for them. Kids always know when their parents are trying to keep information from them, and really it scares them. They think, If this is so scary that Mom and Dad can't tell me about it, it must be terrible. I think this can allow sensitive children in particular to have their minds run away with them.

I was completely truthful with my daughter when she was diagnosed at 6. I tried to explain everything to her in a way she could understand, which is definitely tough at these young ages. I told her she had a choice of wearing her brace for 8-9 years, or that if she wanted there was a surgery (VBS) that might allow her to be out of the brace. I think it is a big mistake to use the possibility of surgery as a threat to force brace compliance, because if you make surgery out as a negative thing, what do you tell her later if it becomes necessary? This is especially true with JIS kids who have such a high likelihood of surgery. My daughter truly hated her brace from the beginning, and so for her she always knew she wanted VBS, which she had very successfully this past May. She did amazingly well with surgery and returned to school 10 days after her surgery, no problem. Peace has returned to our home because there is no more arguing or tears about the brace. It was a good choice for us.

Like Chris said, each child and family are different, and I am sure you will find a way to answer your daughter's questions. For my two cents worth, I would really try to find a way to give your daughter the information she wants and deserves to know. It will make things easier later.

Good luck, it sounds like you are doing a great job so far. I think it is extra hard on us mothers who also underwent scoliosis treatments, to now have to see our children enduring them. I know this has been the case for me, definitely.

Gayle

mamandcrm
01-04-2011, 11:26 AM
I didn't mean to make VBS sound like a bad choice. I don't think it is. We actually had a VBS surgery date for a for a period of time. It just wasn't the right choice for G--her curve* was at the very outer edge, and we just didn't have the confidence that we would get the result that we were looking for. And she wanted to try full-time bracing first--the idea of surgery just really scared her (which I did not expect but she likely would have gotten over). We also were very encouraged after talking to other parents with children in the RC brace, and, in the end, felt very sure that was the best choice for her. I think doing your research and then following your gut instinct is the right thing do. That leads people in different directions. I don't rule out considering VBS again if things go south.

jrnyc
01-04-2011, 12:32 PM
i think a key word is age appropriate, as Maria and Gayle said!
parents know their kids best, and know how much they can handle at one time...
overloading a child doesn't help...it usually instills fear...

keep it age appropriate, and add info as the child can handle it..or when they ask for more...

that is just my advice, from 25+ years with kids, including as a counselor...

but mama usually knows best!

jess

mariaf
01-04-2011, 02:59 PM
Hi Jess,

While mama may sometimes know best, I'm sure I'm not the only one who appreciates the benefit of your experience with children :-)

Thanks for confirming my gut instincts about how to deal with talking to kids about this stuff!

jillw
01-04-2011, 07:14 PM
Resiliance,

Like you, I didn't think my daughter could possibly grasp (at the onset) that she would wearing a brace for several more years than her entire life had lasted up to that point. I gave her the truthful, albeit limited information, that the doctor would tell us how long. If she had asked more questions at that time we would have gone into more detail, but she was satisfied with the answer so we left it at that. (kind of like when they start asking about the birds and the bees. When they first ask about where babies come from they might not be ready to hear about STDs and the kama sutra haha) When she started asking again some time had passed and she had adjusted to brace wearing a bit better. She seemed to want to know a little more so i gave another truthful, yet limited , answer that the doctor would tell us,but usually people have to wear braces until they stop growing which means it would be for many years. She was satisfied with the answer at the time. A year later she asked again and followed up with the question of how long people grow. That's when I went into more detailed information and while it was a lot for her to digest, she understood it better. Not to mention its less scary for a 9 year old to hear that they may have another 6-7 years in brace than it is for a 7 year old to hear it will be close to a decade. I don't know if my daughter will ever be a candidate for VBS (right now her curve is too small and since the window is somewhat narrow we face the possibility that if her curve progresses it might end up being too big for VBS); however, when we talked about time in brace, I did also talk about VBS so she realized there is a chance that if wearing a brace became too much there could possibly be options. She was totally ANTI surgery (just scared, which was fine because her curve was too small at the time), but recently she mentioned that she wouldn't mind getting VBS if she qualified. If brace wearing gets to be too difficult for her, I might allow her more out of brace time and see what happens with the hope that any progression would still be within VBS levels (and that by then the backlog at Shriners Philly would be gone :) ) . Good luck

Resilience
01-05-2011, 12:07 AM
Thank you all for your support and wisdom!

I am truly moved by the kindness of strangers.

I am taking notes, literally.

mariaf
01-05-2011, 07:20 AM
Resiliance,

Like you, I didn't think my daughter could possibly grasp (at the onset) that she would wearing a brace for several more years than her entire life had lasted up to that point. I gave her the truthful, albeit limited information, that the doctor would tell us how long. If she had asked more questions at that time we would have gone into more detail, but she was satisfied with the answer so we left it at that. (kind of like when they start asking about the birds and the bees. When they first ask about where babies come from they might not be ready to hear about STDs and the kama sutra haha) When she started asking again some time had passed and she had adjusted to brace wearing a bit better. She seemed to want to know a little more so i gave another truthful, yet limited , answer that the doctor would tell us,but usually people have to wear braces until they stop growing which means it would be for many years. She was satisfied with the answer at the time. A year later she asked again and followed up with the question of how long people grow. That's when I went into more detailed information and while it was a lot for her to digest, she understood it better. Not to mention its less scary for a 9 year old to hear that they may have another 6-7 years in brace than it is for a 7 year old to hear it will be close to a decade. I don't know if my daughter will ever be a candidate for VBS (right now her curve is too small and since the window is somewhat narrow we face the possibility that if her curve progresses it might end up being too big for VBS); however, when we talked about time in brace, I did also talk about VBS so she realized there is a chance that if wearing a brace became too much there could possibly be options. She was totally ANTI surgery (just scared, which was fine because her curve was too small at the time), but recently she mentioned that she wouldn't mind getting VBS if she qualified. If brace wearing gets to be too difficult for her, I might allow her more out of brace time and see what happens with the hope that any progression would still be within VBS levels (and that by then the backlog at Shriners Philly would be gone :) ) . Good luck

Great post, Jill.

And I happen to think your approach was a very wise one. Kids, depending on their age, can't really gauge time anyway. And while you were never dishonest with your daughter, you gave her the information a bit at a time, based on what she needed to know at that moment. Even for adults, sometimes too much information about what MIGHT happen isn't good.

Again, the bottom line that I think we all agree on is that, as parents, one should go with their gut about their child because mom usually knows them better than anyone.

Resilience
02-09-2011, 11:14 PM
Update on my amazing daughter:

Day to day life with the brace is going as well as can be expected. We have the clothes pretty much figured out. The air holes have helped the skin irrigations. She's sleeping well. The orthotist spilled the beans about length of time, years, and my daughter processes it in a very matter of fact way, considering what color her next one will be.

Meanwhile, I've been in contact with Janet at Shriners in PA and we have a consult scheduled there in April. From reviewing her records Janet feels she will be a candidate for VBS if we decide to go that route. I've discussed VBS with our specialist here and he does not perform this procedure, he's doing studies on tethering in animals and humans in other countries and feels that will be the next thing better than stapling but the time frame will not work out for us. He is friends with Dr Betz though, and would be happy to co-treat my daughter.

Thanks again for all of your support. I'll let you know how our trip to Philly goes!

Bigbluefrog
02-10-2011, 11:54 AM
Update on my amazing daughter:

Meanwhile, I've been in contact with Janet at Shriners in PA and we have a consult scheduled there in April. From reviewing her records Janet feels she will be a candidate for VBS if we decide to go that route. I've discussed VBS with our specialist here and he does not perform this procedure, he's doing studies on tethering in animals and humans in other countries and feels that will be the next thing better than stapling but the time frame will not work out for us. He is friends with Dr Betz though, and would be happy to co-treat my daughter.

Thanks again for all of your support. I'll let you know how our trip to Philly goes!

Our children are amazing! The inner strength and acceptance of the hand dealt to them....is always amazing to me.

I have not heard of tethering...do you know more about it?

I wish you the best in your decision. I have read many good points on VBS, but we were beyond puberty point.

Wonder how the staples work with growth? Or any surgery for that matter. My dd grew quite a bit in the brace. We use a combination of therapies with success.
Yes, we have a team of specialists from orthitist, orthopedic surgeon, pediatrician, PT therapists, massage therapists, and a chiropractor.

As parents, we will do whatever it takes to help them be healthy.

If you do the VBS, I believe there is a forum website that has many who have participated with success.

mariaf
02-11-2011, 08:30 AM
Hi Resilience,

Your daughter does indeed sound amazing!! I have often said that these kids could sometimes teach us adults a thing or two :-)

Glad to hear you have contacted Janet - and good luck at your appt. in April. I'm also happy to hear that your local doc and Dr. Betz already know each other. Dr. Betz does seem to have an excellent relationship with a lot of orthos, perhaps because he is so well respected.

Thanks for the update - please keep us posted.

Resilience
02-11-2011, 09:33 AM
I have not heard of tethering...do you know more about it?


My understanding about tethering is that where the staple is hard on 3 sides the tether has 2 hard anchors and a softer material in between to allow more flexibility and space for the disc. Janet at Shriners said that they are starting to do tethering already. Sounds like Dr. Newton has patten for a specific tethering device which he wants to use in the near future. (To his credit he was fully open with me about this) and of course it's easy to find on line.

Thanks everyone for your support and best wishes to you and your families!

Resilience
04-11-2011, 11:30 PM
We're back in San Diego after a very worthwhile trip to Philadelphia to see Dr. Betz and Janet.

X Ray Improvement! Down to 24 degrees thoracic and 22 degrees lumbar. YES!!

Dr. Betz recommended waiting list for VBS for one year out and in the meantime continue with her TLSO 20 hours a day and recheck with Dr. Newton with 24 hour out of brace X Rays again in 3 months.

I feel some relief for the first time in months: that we have a plan and a back up plan.

Thanks for the support on this site!

mariaf
04-12-2011, 09:24 PM
Great news!!

Yes, it feels good to have a plan in place :-)

Please continue to keep us posted.

Ballet Mom
04-13-2011, 03:06 PM
Hooray, no progression is always good news!

Resilience
01-19-2012, 08:50 AM
Hi all,

Just thought I'd update and seek some support as we are in a cross road again.

My daughter now has flattening of her left side of her rib cage on X Ray. "moderate" Hopefully her new TLSO will prevent further squeezing of her rib cage.

Her Cobb numbers are stable at 27 degrees. Her rotation has increased from 7 to 10. In light of the above and her age her doctor discussed tethering as an option for her. We had a long discussion and he said we had a year or two to decide. Since we'd already been seen at Shriners Phila I have sent the CD of the X Rays to Janet and am waiting to hear their opinion. Last April when we were there we were placed on the VBS waiting list. Their plan then was VBS up to 35 degrees and Tethering if more than 35.

I am anxious to hear where we are on the list.

Another thing that I'm nervous about and am trying to keep in check is an incidental finding on my daughter's X Ray: an unrelated spot on her right 8th rib. Is it just a bone cyst? or a tumor? Investigate with a CT Scan? or keep an eye on it? I am waiting to hear back from all of the doctors and their Radiologists and we'll go from there.

rohrer01
01-19-2012, 09:10 AM
I'm hoping you get good news for your daughter. I don't even know what the tethering procedure is. I've seen it mentioned several times on the board. As far as the growth on her 8th rib, I would suspect if it is anything that looks suspicious, they will want to take a biopsy. I hope it's just an anomoly and nothing serious. Best wishes.

Rohrer01

Pooka1
01-19-2012, 09:11 AM
Another thing that I'm nervous about and am trying to keep in check is an incidental finding on my daughter's X Ray: an unrelated spot on her right 8th rib. Is it just a bone cyst? or a tumor? Investigate with a CT Scan? or keep an eye on it? I am waiting to hear back from all of the doctors and their Radiologists and we'll go from there.

HI.

I just wanted to comment on this... my daughter has two incidental findings on an MRI in her case, not radiograph, one in a kidney and one under her tongue. I was told it is not unusual to have incidental findings. We chased both down with other imaging, determined that they were not a problem, and moved on. But I recall at the time thinking that if it was something serious then it was caught earlier than otherwise. In fact the scoliosis diagnosis itself alerted us to have aortic monitoring for my daughters, something that might actually save their lives if they indeed have a connective tissue disorder with that finding.

Knowledge is power. You can never have too much information.

leahdragonfly
01-19-2012, 09:31 AM
Hi there,

sorry to hear of the rib problems from the brace. These young kids in braces are so pliable that I think it is really easy to have them inadvertently in a brace that is way too tight. Soon before Leah's VBS surgery she developed a hard, painful lump on her lower rib, right where the brace was pressing. It was x-rayed but didn't show up as anything, and the word biopsy was briefly mentioned. Turned out to be some sort of bone irritation from the brace, which quickly disappeared after being out of the brace for about two weeks. Dr Luhmann's nurse told me they've had this happen occasionally with kids in braces.

Good luck with getting your date, and please do keep us updated.

Resilience
01-25-2012, 12:05 AM
I heard back from our doctor's wonderful RN. She said upon review with the radiologist the current thought is that the spot in question on her rib is a healing fracture, that does not look like a typical healing fracture, due to the ???

We have an appt in 2 days for in brace X Rays (new brace) and I'll get some more specific info then. Still waiting to hear back from Shriners re their opinion on "the spot"

Has anyone heard of a child in a brace having a fracture of a rib from the brace? There was no other trauma.

sigh......

leahdragonfly
01-25-2012, 11:33 AM
Hi,

This sounds so much like the spot on Leah's rib--except her x-ray of the bump was entirely clear. Prior to the x-ray the pediatrician said the bump felt so much like a broken rib that was healing. Turned out that basically the brace was pressing so hard on the periosteum (tissue covering the rib) and causing irritation, that it caused the rib to grow a bump. I felt terrible about this of course. Once we stopped the brace the bump quickly went away and it is completely gone now.

This happened to at least two other kids on the VBS website. You can PM me if you want me to point you to their old posts.

Have you been back to the orthotist to discuss this? They should shave away an area inside the brace to relieve pressure off the rib. I know for us, this really helped to affirm our decision for surgery.

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

Resilience
01-26-2012, 12:06 AM
Thanks Gayle, especially for weighing in just a few days prior to your revision. Hope you are doing alright.

This all came up just as we were ordering a new brace anyway. I will certainly speak with our doctor tomorrow at our follow up and new in brace X Ray. It is also really leaning us toward VBS. I keep thinking, "First do no harm" Also, last night she had a lot of pain in the area after swim team practice. We let her sleep without her brace as it hurt too much to wear it, and some Advil. Today she wore it to school no problem.

We are waiting to hear from Dr. Betz, he's been out of town. I'd really like it if you could link me to the older posts with a similar problem. I'll PM you. Our orthotist said he's never seen anything like this.

leahdragonfly
01-26-2012, 08:37 AM
Hi there,

I found the two threads that talked all about the bumps caused by bracing on other kids, as well as Leah. They are bumped up to the top in the "Discussions" area of the VBS list. Let me know if you can't view them and I will find another way to link them to you.

Good luck,

Ballet Mom
01-28-2012, 03:50 PM
Thanks Gayle, especially for weighing in just a few days prior to your revision. Hope you are doing alright.

This all came up just as we were ordering a new brace anyway. I will certainly speak with our doctor tomorrow at our follow up and new in brace X Ray. It is also really leaning us toward VBS. I keep thinking, "First do no harm" Also, last night she had a lot of pain in the area after swim team practice. We let her sleep without her brace as it hurt too much to wear it, and some Advil. Today she wore it to school no problem.

We are waiting to hear from Dr. Betz, he's been out of town. I'd really like it if you could link me to the older posts with a similar problem. I'll PM you. Our orthotist said he's never seen anything like this.

Hi,

Wow, the brace you have your daughter in gets the correction of a nighttime brace and it's worn all day? That's very unusual. Is it extremely tight or do your daughter's bones just reshape easily to the brace? It seems crazy to have a brace with that kind of correction for all day wear.

Anyhow, good luck with your new brace. Hopefully you've received the answers to your questions at this point.

Just something to think about when you're considering the VBS surgery. Double major curves do not seem to have achieved the success that single curves have in VBS. This might be something you wish to discuss with Dr. Betz to make sure you're satisfied before you decide to have that surgery.

Also, there was a physician on this board whose daughter had double major curves VBS and they were somewhat disappointed that her daughter had lost some flexibility due to the number of staples that had been placed. Unfortunately, those threads no longer exist. Just something to consider while you're asking questions and making decisions. I'm certainly not trying to convince anyone one way or the other.

Good luck.

leahdragonfly
01-28-2012, 04:36 PM
Hi,

Wow, the brace you have your daughter in gets the correction of a nighttime brace and it's worn all day? That's very unusual. Is it extremely tight or do your daughter's bones just reshape easily to the brace? It seems crazy to have a brace with that kind of correction for all day wear.

Just something to think about when you're considering the VBS surgery. Double major curves do not seem to have achieved the success that single curves have in VBS. This might be something you wish to discuss with Dr. Betz to make sure you're satisfied before you decide to have that surgery.

Also, there was a physician on this board whose daughter had double major curves VBS and they were somewhat disappointed that her daughter had lost some flexibility due to the number of staples that had been placed. Unfortunately, those threads no longer exist. Just something to consider while you're asking questions and making decisions. I'm certainly not trying to convince anyone one way or the other.

BalletMom,

I think it is not uncommon to see larger in-brace corrections in these younger JIS kids than regular AIS kids/teens. The young ones are just so pliable.

I have every confidence that Resilience will have all the pros and cons of VBS explained to her by the expert, Dr Betz. I'm really not sure why you would feel the need to even make these comments, since you have no personal experience with VBS, while Dr Betz, well, he's the one who pioneered and refined it. Your comments come across as some type of scare tactic or sour grapes. And really, to mention the old posts from Nina, whose child allegedly had a VBS experience far different than ANY other child we've heard of, made claims about her child's alleged outcome that were very hard to believe at face value, who then suddenly disappeared and pulled all the posts down, why would you even give ANY credibility to her at all? I thought you had better judgement than that. Seems like you should stick to advising parents about things you have personal knowledge of. Just saying.

mariaf
01-29-2012, 11:47 AM
Well said, Gayle.

Thankfully, I can assure you that Resilience is smart enough to have had a thorough conversation with Dr. Betz about all of this. And even had she not brought up the subject, I can tell you from personal experience (and I think those without any should withhold giving any advice - the same way I would not advise about things on the adult surgery threads that I know nothing about) that Dr. Betz would be the first to advise against VBS if he felt the patient didn't have an excellent chance of success.

In fact, that is the reason that he and his staff: (a) have refined the criteria for VBS so that, for example, patients with curves over 35 degrees are no longer advised to have the surgery; and (b) have begun using vertebral tethering, in place of VBS, for larger curves (which has also been used by Dr. Newton in CA and I believe a few others) with very good success so far.

Dr. Betz felt that even though some patients (my son for example) did have success with VBS even when they started out at over 35 degrees, that the success rate was not high enough for him that he would continue to recommend it for this set of patients. This was after he and his staff compiled and reviewed the data over the past decade on VBS/outcomes.

As you know, Resiliance is also a member of the VBS forum, where she has access to dozens of parents with personal experience with VBS and where we continue to update the information on the site with the most current data and articles obtained directly from not only Dr. Betz but other prominent orthopedic surgeons who have a particular interest in JIS and who are highly regarded in that field (i.e., Dr. Vitale, Dr. Hresko, etc.).

Regarding loss of flexibility, I don't know a single child (regardless of whether they've had one or two curves stapled) who has lost any flexiblity whatsoever. I don't even think it's possible given the nature of the procedure (in fact, one of the main advantages of VBS vs. fusion is precisely that the former does not limit flexibility in any way).

Cara and I, who co-moderate the VBS group, have probably kept in touch with more VBS parents than just about anyone (and 2 of our 3 founding members have children with double curves). In fact, sometimes parents are referred to us not only by the docs in Philly, but by other surgeons including the ones mentioned above, so that we and other parents in our group can share our personal experience and offer our support them. In all the years we've been doing this, virtually every child we know has maintained full flexibility post-VBS (including our own sons). These children participate fully in baseball, basketball, hockey, gymnastics, horseback riding, etc. with no loss in range of motion or flexibility whatsoever. It just doesn't seem to happen.

As for anything posted by that former member (who took down all her posts and whose child's surgery, for the record, wasn't even performed at Shriners in Philadelphia by the way), I would give more credibility to what is in my next fortune cookie. To bring those unsubstantiated claims up, and unduly scare new members considering VBS, is nothing short of unconscienable.

Resilience
02-04-2012, 06:46 PM
As always, I appreciate the insights from others on this forum. Thank you.

My daughter is doing well in her new brace and has correction to 15 degrees. Dr. Newton had reviewed the December out of brace X Rays with the radiologist, and they went back through all the X Rays over the past year and came to the conclusion that it is either a bone cyst or a slight fracture healing, possibly with a glob of fat in it. The radiologist had missed the spot all together on his initial read of the film. I feel satisfied and since I was told not to worry about it I am not worrying any more about that darn spot!

That said, I've been in communication with Shriners and have a tentative time frame of late April for VBS with Dr Samdani. I should clarify that the top curve is 28 degrees and the compensatory lumbar curve is 24 degrees. I believe that Dr. Betz mentioned VBS just for the thoracic area but I will clarify this with Dr. Samdani.

I feel good about the direction we are headed.

mariaf
02-04-2012, 08:43 PM
I feel good about the direction we are headed.

As well you should :-)

You have scoured the country, literally from coast to coast, to get your daughter the best care! And since she seems to be an excellent candidate for VBS, you have every reason to be optimistic for a successful outcome.

Please keep us posted.

mom to PJ
02-10-2012, 04:32 PM
Hi Resilience! It sounds like you and I are on a very similar journey with our daughters. I have been reading your thread and just have not had the time to sit down with thoughtful reply =)

I am so happy to hear that the bump is nothing to worry about. Funny that you mention a bone cyst as I had never heard of one until recently. But they are quite common from what I understand.

We are curently trying to decide whether to have the tethering procedure done as PJ's major thoracic curve is too big for VBS. She was also diagnosed in 2010 at age 8.

We hope all goes well with your daughter's procedure. Please keep us posted.

@Gayle - It looks like you have had your revision done by now. I hope you are feeling well and that all went well with the surgery =)

mariaf
02-10-2012, 09:50 PM
Tracey,

There is another thread about Gayle's surgery. She had to deal with quite a bit of pain, etc. but came home from the hospital and is hopefully now on the road to recovery. The doc said her surgery went well and he does not expect any future problems.

Resilience
02-24-2012, 05:45 PM
Mom to PJ,

Best wishes for your daughter! Do you go to Shriner's Philadelphia too?

Yes, we are on similar paths.

We will be at Shriners on 3/29 for an office visit and then check in on 4/24 for VBS on the 25th.

mom to PJ
03-05-2012, 08:33 AM
Yes! We did make it to Shriner's and are currently on the waiting list for tethering while we consider our decision. It is amazing to me how many people are dealing with this disease with so little information out there about it. I have met so many adults who suffer from scoliosis since I started talking to people about what is happening with our family. I am a very private person and it is difficult for me to discuss something so personal but I am so glad that I have started. I am so glad that I found this forum. I don't understand why our doctors never even mentioned that there may be alternatives to bracing for so long, especially when the bracing became ineffective, or at least non-preventative. It may have been much worse without the bracing, but her curves continue to worsen even with it.

Best of luck to you and your family for the surgery. I hope the outcome is everything that you are hoping for and please keep us updated on your daughter's progress after the surgery :)

mariaf
03-06-2012, 08:55 AM
I don't understand why our doctors never even mentioned that there may be alternatives to bracing for so long, especially when the bracing became ineffective, or at least non-preventative.

This was true in my son's case as well. We found out about alternatives (in his case, VBS) on our own, almost by accident. Sad that things don't seem to have changed much in the past 8 years.

In any event, I'm glad you were fortunate enough to find these alternatives on your own as well. It's actually the main reason we started www.vertebralstapling.com - to make sure people DID know what all their options are and could then make their own informed decision.

Resilience
03-07-2012, 12:21 AM
Thank you Maria and your friends who pioneered the VBS site.

Please know that you have made the difference in many children's lives by getting the word out!

Thank you all for paying it forward!

mariaf
03-07-2012, 08:21 AM
Thanks for the kind words - I will pass them along to the others involved in running the site.

I also wish to point out that the website could not work or function without all of the wonderful parents who came after us, and who continue to pay it forward as well.

Resilience
04-05-2012, 03:17 PM
My daughter had her appointment with Dr. Samdani last week and all went well. As others have said, he was sincere and informative and had a calm presence. We discussed the rib cage changes which have developed as a result of her brace and while he said these side effects do not contraindicate the brace, the VBS option is even more appealing in her situation. What I really appreciated was that he was in no way "selling" VBS. He wanted to make sure that we understood all of the options available. We are very much ready for VBS but I appreciated his candor. He said that if it were his daughter he would also want the VBS for her and that was, of course, reassuring to hear.