My sweet 8 yr old daughter is about to get her first brace

[Resilience]

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]

Great news!!

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

Please continue to keep us posted.

[Ballet Mom]

Hooray, no progression is always good news!

[Resilience]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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.