Other options after fusion??

[MATJESNIC]

Emma12,

I am so sorry to hear the news about your daughter's curve. Many times our kids have curves that start off as compensatory and end up being a full-blown curve. That is what happened to Nicole. Some surgeons would have chosen to include the lumbar in the initial fusion because they would have wanted to avoid a second surgery. But if her curve didn't increase, then of course she would be better off only having the top of her spine fused. Nobody has a crystal ball. I am curious as to how much more growth your daughter has.

I wish you all the best in all of your decisions. Please, keep us posted.

[mariaf]

Emma12,

Just wondering if you ever got an appt. with Dr. Betz and if so what he had to say about your daughter's options at this point.

Laurieg6,

Did Dr. Betz do Alex's surgery as well? Just curious

[emma12]

Mariaf,

Our appointment with Dr. Betz is on May 20th, so we'll see what he has to say then. Right now I am worrying over everything again, it just seems to never stop, lol. She's grown over 3 inches since surgery in August, her risser then was 0, probably is not still at that level. Her lumbar still looks very flexible, much more so now that she's been doing the physical therapy.

Our local Shriner's have offered to fly us over to Philadelphia on a private plane-- (we're in mid-Ohio) I'm fretting somewhat over that. The day I was looking at booking flights, I got a call from them. My daughter thinks this will be awesome (although, she isn't a good "flyer" in the first place). I told her it was her choice, and we'll go however she wants to go. It will certainly be more convenient (as we're an hour away from a big airport), and this plane will land at our local airfield. And, you don't have the added stress of checking bags... I do have to submit the EXACT weights of all of us--that will be bad enough on its own, ha!! I'd like to lose about 15 pounds before I have to do that. But, I guess we're going to make an adventure out of this and go for it. It will certainly make this trip more exciting, and not just another visit to a doctor for her. It will definitely be memorable!!

She's been continuing with the pt, and, the pt thinks she sees some improvement. It will be interesting to see a new xray to confirm this, hopefully, we are getting some results. It's been painful to get her to do her exercises regularly, so we are struggling somewhat with that. Some days I think she looks better, other days not so much. She got shoe orthotics yesterday, because on top of everything else, she has collapsing feet (there is a technical term for this, but at the moment, I can't think of it). She says they feel great, and went off to school with them this morning. I cautioned her on overdoing it right now, the orthotist said she needs 2 weeks to really wear them all day. I hope she'll take them out after a few hours!

This orthotist also says she has an oblique hip, and thinks that she should have a lift. We've decided to hold off on that right now, to give the pt a chance on its own. We can always go back to a lift if it is needed. I think I posted somewhere else about this?

So, that's about it. Thanks for your support, and I will keep you all informed. Wish us luck on the private plane, I will probably need some valium or something---lol !!!

[mariaf]

Hi Emma,

Thanks for the quick reply. WOW - a private plane!!! I thought I knew just about everything when it came to Shriners, but I didn't realize they had access to private planes!! It does sound exciting and different for sure! (You do know that if you chose to fly commercial they will assist with the cost - not sure on all the details, whether or not it is 100%, what the procedure is, etc. - but, hey, if you're game then I say "go for it" with the private plane!)

I'm glad the PT seems to be helping - it surely can't hurt - and please let me know what Dr. Betz has to say.

Feel free to e-mail me as well if you like.

Best of luck!

[emma12]

I believe the plane is through Angel Flight. Haven't heard the exact details yet, but, it will be a small private plane. I am going to send you an email on this, as I see you have some info on the vetebral stapling web site, maybe you have additional info on them. Thanks again!

[mariaf]

Emma,

Thanks - that would be GREAT! We've compiled a lot of information on the VBS site but are always happy to add more!

BTW, there is some good info on the VBS site for anyone travelling to the Philadelphia area for medical reasons - not just for VBS or to Shriners - there is information on hotels that give discounts to patients and their families, as well as info on the local Ronald McDonald Houses (there are three), and other area information (restaurants, getting around town, etc.).

I know there are several other hospitals in Philly as well so perhaps this info can help others. Again the site is:

www.vertebralstapling.com

and look under "Philadelphia Travel Info".

[emma12]

Just a quick post on the Angel Flight we were going to take, found out the other day that they only fly 1 parent and the patient, they use very small private planes. While it sounded great and much more convenient for us, after deliberating on this, we booked commercial flights, as this is our first consult and my husband tends to hear things that I don't hear...so, it was important that he was also there for the first appointment due to the nature of our consult. It is great though that Shriners provides such a means for everyone to be able to receive medical help that they may not otherwise have been able to obtain.

I will keep you all posted, our appointment is next Tuesday. I am sure it will be interesting!!

[mariaf]

Best of luck and we'll be waiting to hear how it goes!!

[laurieg6]

Maria,

I just saw your question to me about whether or not Dr. Betz did Alexander's surgery. No he didn't because we cancelled the appt. After 4 similar opinions from surgeons in Seattle, all indicating a need for fusion in the near future, we picked a local spine surgeon at our Children's Hospital. We just figured that Alexander wasn't a candidate for VBS (because his scoliosis is congenital) and everything else (I'm not sure what) was probably too experimental.

Emma12,

Good luck with your appointment next week. I hope you get the really positive and hopeful answers you're seeking and that your daughter can avoid further fusion.

[mariaf]

Thanks for the response, Laurie.

Yes it makes sense that if VBS was not an option that you would choose a local surgeon that you were comfortable with.

Hope your son continues to do well.

[emma12]

Well, we are back from our whirlwind trip to Philadelphia (flew out Monday evening and returned last night). Really yucky weather there yesterday, cool and rainy all day, 2 hour delay with our flight out of there due to the weather. Sorry for the long post,

We didn't hear what we were hoping to hear--Dr. Betz is recommending further fusion to L4 (possbly, there is some concern that L4 is partially fused with sacrum, so this needs further investigation), and thoracoplasty to reduce rib hump. He says any of this surgery is purely cosmetic at this point (since she has no pain, and lumbar curve is not worsening-it actually was slightly lower than in Feb, but, rotation may be increasing) and would be until she reaches middle age, when he predicts she will likely have significant back issues with lower spine if we don't fuse further down now.

Much more aggressive surgery than what I had previously discussed with her surgeon that did the initial fusion (he just wants to fuse to L2, saying that kids lose too much mobility to go further down). The thoracoplasty I had discussed with several surgeons prior to initial fusion, and they all said they would not recommend or do that. Dr. Betz thinks if we are going to do any further surgery, we should also do this because it would make her back look perfect. He made it sound easy, but from what little I've read here this morning, it sounds pretty invasive. I need to do more research on this before I think I would put her through that. From what I have read, it is significant surgery in itself and how do you make the decision to put your child through those risks purely for a cosmetic purpose? At this point, my daughter doesn't seem to be bothered by her back's appearance, and to be honest, some days it isn't very noticeable to me (who watches constantly for change).

Also, Betz thinks it should be done as soon as possible, while she still has growth left, so that the lowest vertabrae can stabilize properly on the pelvis, and grow normally. Which is contrary to what I've read and been told before, that it is better to let as much growth occur before doing fusion. He showed us on xray what he meant about the lower vertabrae, and how he would expect them to grow if nothing further is done, and why this would cause a problem for her years from now. They graded her skeletal growth as a stage 6, that she has a good amount of growth left. (is this out of 10? didn't get a risser, which I understand, and didn't ask what this meant exactly).

VBS is not an option for her as she has rotation going on, and her spine isn't stable enough for this. He has some other experimental type surgeries going on, but again, she is not the ideal candidate for these at this time.

So, alot of research to do, again, and decisions to make. More opinions to make sense of and consider.

[mariaf]

I'm so sorry you did not get the news you were hoping for in Philadelphia.

I have heard that Dr. Betz sometimes proposes a slightly longer fusion than other docs and I guess this is part of the reason. He feels that perhaps a shorter fusion (or one not as long as it needs to be) will create the need for further surgery/other problems later on.

It seems he was very honest with you - as he always is - about it being purely cosmetic "at this point". I, too, would be very hesitant to put my child through major surgery for purely cosmetic reasons.

However, it sounds like the real issue you will be weighing is Dr. Betz's statement that she will "likely have significant back issues with the lower spine" later on in life - which is very different than surgery for cosmetic reasons so I don't envy you having to make that decision.

All I can say is we are here for you - do your research - I know Dr. Betz said it should be done sooner rather than later but it's not an emergency situation - they are probably booked for the next few months in the OR anyway I would think, so even if you schedule her surgery now, you'd have some time to do your homework.

Also, as I'm sure you know, Dr. Betz is tops in his field and, perhaps equally important, he always tries to do what he truly feels will be in the child's best interest long-term.

Best of luck to you.

[Carmell]

Thanks for the update. It sounds like Dr. Betz did a good job of explaining, in detail, what his thought process for her is. What he described makes sense. If the lower spine and pelvis have an abnormal growth pattern now (not his words, but that's kinda the impression I got) it's not going to get better on its own. Stabilizing the spine now, while she's healthy, not in pain, etc. is a recommendation many orthos make. Many adult patients wish they would have had these kinds of options when they were younger.

If you are not 100% confident in Dr. Betz's suggestions about how the future looks for her spine, ask more questions. Keep asking questions until you have that peace of mind you need to make the right/most informed decision. It won't be an easy one, but knowing as much as you possibly can is very important.

Many parents have been in similar shoes - meaning many parents have handed their seemingly healthy child over for major/invasive surgery not knowing if they are doing the right thing. However, looking at the big picture (including years of post-surgery growing and overall health) they are glad they made those decisions. It's never an easy decision to make.

We are at a point where we are considering thoracoplasty for Braydon. His rib hump is significant. It is uncomfortable to lay on the floor, sit in a chair with a hard back, etc. In Braydon's case, his pulmonary function is already compromised so we have to think about the potential of reducing lung function further by reducing the space for the left (good) lung. Is it worth it? I don't know yet. Lots of pros and cons to weigh. UGH.

Dr. Betz is also correct that timing of surgery can be important. Having surgery in her youth will generally result in a smoother and quicker recovery. She will also have time for her body to get used to the new position without having to fight the surgical correction (which can be very tough on adults).

Good luck with this. Let us know what you decide and if you will be getting more opinions about this.

[emma12]

Thanks for the support and input. At this time, I feel like I need some other opinions on this (especially the thoracoplasty). Also, Dr. Betz said there definitely needs to be more thorough investigation on whether the lower spine is somewhat fused to sacrum already before the call could be made on how low to fuse. My daughter's physical therapist has already noticed reduced movement in that area, and has been working the past couple weeks specifically on this area. She'll be interested in knowing that there could be something going on there physically preventing that.

He did explain clearly the effect on the lower vertebrae he believes would occur through the years. He spent a great deal of time with us (even though there were about 70 people in the waiting area when we left!!!--busy, busy place). He and Janet were wonderful in answering the questions we had, but, as we hadn't expected this, I didn't have questions that I do now after sleeping on this.

Maria, I believe your statement about Dr. Betz recommending longer fusions than others may be correct. He thinks there would be a chance that if she were only fused to L2, that a third surgery might be needed down the road, and then we would be dealing with a big mess and that chance isn't worth taking (although, as I said before, there is some question whether there is already a fusion down there that would preclude him from fusing that low). He is very firm in his belief about his past research, and certain "predictors" that he bases his opinions on. I definitely felt like he'd rather be more aggressive in the initial approach to avoid possible further complications than taking a milder approach and having to revise. He may very well be correct, he's very straight forward, and I respect his opinions. Also, they are booking into the fall now for surgeries, so, it would be a ways off. I am a little concerned for my daughter about travel home after surgery there, so that's something else I'd have to consider.

Carmell, can you tell me where to find more information on the thoracoplasty? Right now I can't fathom making that decision (knowing there is reduced lung capacity, along with other major concerns... when my daughter has absolutely no complaint of her back or rib hump), and honestly, I don't think it looks that bad most days either. It is noticeable when she bends over, but, only slight shoulder blade sticking out when she is standing. The uneven waist line is more noticeable to me. I'm sorry to hear that you are contemplating this surgery, too.

The good news (I don't think I mentioned above), is that the lumbar curve appears slightly better than in Feb, however, in no way does he think that indicates it is correcting itself. He believes that 6 months after fusion the compensating curve is done doing what it's gonna do. I don't get the impression that he thinks it will worsen either, just that over the years the vertabrae will compress on one side and cause issues there. And, he thinks the fused portion of spine looks good--

I will keep asking questions until I am confident and have that peace of mind. I just wish that I weren't in this place again--- I went through this before!!! LOL, I wish there were a crystal ball that could be used to see into the future. Why isn't there some standard of treatment that everyone agrees on? It is extremely frustrating!!!

[Carmell]

Carmell, can you tell me where to find more information on the thoracoplasty? Right now I can't fathom making that decision (knowing there is reduced lung capacity, along with other major concerns... when my daughter has absolutely no complaint of her back or rib hump), and honestly, I don't think it looks that bad most days either.

Me again...

I'll look again about sites discussing thoracoplasty, other than this one. You can do a search for thoracoplasty and find several threads, mostly from adults who have gone through the procedure. I slightly misstated myself. There *may* be reduced lung function after thoracoplasty. Not everyone has reduced lung function. It is one of those "risks" they discuss, but not all patients experience that. For Braydon, it is a higher possibility because of his chestwall structure and congenital scoliosis issues. Not a typical patient. I think you have strong arguments NOT to have a thoracoplasty. I would imagine if she has pain/discomfort when sitting in a hard chair, laying on the floor or even if she doesn't like the cosmetic look of it, then you may want to discuss this surgery. But, none of that applies (it seems) so I'm not sure its necessary. Like they mentioned already - more cosmetic than anything. Again, I think Dr. Betz was looking to the future and trying to predict if she would be unhappy about it years down the road. If so, fix it now while they were operating - saves a future MAJOR surgery.

Why isn't there some standard of treatment that everyone agrees on?

Because no two patients are alike! Your daughter has unique issues that are not common or typical in most scoli patients. You wouldn't want her treated as a textbook patient because that's not the right option for her unique condition. It is frustrating, but again, research and know as much as you can learn about her specific issues. That will help, mostly. As you already know, it is very frustrating and heartbreaking for us parents. You are doing great. Keep up the good work.