Chiropactic and Scoliosis

[txmarinemom]

I can only comment on my daughter's experience with spinal fusion. They told us that the recovery is one full year.

That sums it up pretty well, Melissa, and I think that's why everyone is so strongly encouraging it ONLY as a last resort.

As I've said, I would have jumped at VBS if that had been an option vs. this.

Out of curiousity, did they use BMP with your daughter's graft? Hanson "spackled" me with allograft/BMP (you can see it in the photos), and from what he estimates, I *should* be fully fused in 3 months.

I hope, I hope ...

Best of luck on your daughter and returning to dance ;-).

[Pooka1]

Pooka,
Even if you did have to travel to Philly for surgery, it is possible to go in a couple days before surgery and have all the pre-op testing done the day before surgery (they often do this for those who travel in from out of town). Many people fly home a day or two after release from the hospital from regular fusion surgery, so as long as W gets the okay from the docs in Philly, the return trip home should not be a problem either.
She might have to make a couple return trips for follow-ups, but after a period of time you could probably arrange to have x-rays taken locally and send them to Philly to have them checked out, this way you minimize time she misses school and only have to go if they need to see her or something comes up.
Shriners will help pay for travel if money is an issue, and there is a non-profit organization called angel flights that helps transport patients to-from doctors appts, etc. that might be able to take you to/from philly as well.
I would talk to Janet about how much time W would actually need to miss school and how much time would need to be spent in Philly after her surgery if she is a candidate. Ask what follow ups are required and if it is possible to have x-rays sent in lieu of a formal visit at any point, etc.

Thanks for this.

As mentioned previously, it is a consolation that money is not an issue.

I will write to Janet about this.

Until I get further answers from the surgeon and some answers from Janet, I remain skeptical as to the actual time lost from school for kids having to travel for VBS surgery versus spinal fusion surgery in town.

Thanks again.

[Pooka1]

(snip)
She has two rods and 26 screws permanently in her back. She will never have a normal use of her spine like her peers who didn't have spinal fusion. She will forever have limited motion because her fuse is from T-2-L-3. I have no idea how that will play out when she goes back to her passion--dance.

I would ask you how many curves your daughter had and where except I would have no idea how to interpret that information! So I won't.

From what little I know so far, because S has a single curve where she has it, her bending will not be affected noticeably, or even at all. That is from both the orthopod and the surgeon. And if her bending is not affected, I am assuming nothing will be affected and she can do anything pretty much after the fusion takes. Is that incorrect?

Thanks for your post.

[MATJESNIC]

Pam,

It is interesting you should ask me that question because that is one question I have been wondering about myself. I really don't remember if that was something I had asked him about among my list of questions. I know I had asked that of the previous surgeon. By the time we had decided on Dr. Dormans at Children's Hospital, I guess I just put my trust in him that he knew what he was doing. I mostly wanted to know about the hardware and the specific fusion. But I have been curious about the bone. I am definitely going to aske him about that next month. I hope to learn that she is fused at our 6-month check-up on March 13th.

Thank you for your well wishes for Nicole and I wish you a successful recovery, as well.

[txmarinemom]

Pooka,

I'm throwing in the towel.

You seem to already have your mind made up, regardless of whether you have the facts. You don't want to hear the facts from the fused group here OR successful VBS cases.

In answer to your question, I personallly know more 13 year olds with single right thoracic curvatures (FYI, the most common) fused in the last 2-3 years than I care to, and every single time, it breaks my heart. It IS THE ABSOLUTE last resort, and yes, it mostly works, but I just can't fathom blowing off another procedure that causes less pain (mentally and physically) - and is proven to work on carefully selected candidates.

You apparently haven't seen my photos or the youtube link, and what's left afterwards. You certainly couldn't have and truly believe there's little or no pain.

Best of luck to you. I'm sure many parents on here only *wish* they'd had your options.

Pam

[Pooka1]

TXMARINEMOM wrote:

"I can assure you W will FEEL like returning to school MUCH sooner if you elect VBS vs. fusion. Fusion surgery is SO much more invasive than VBS. I can't stress that enough. Aside from MY recent surgery photos, there's a video on youtube of a pediatric posterior fusion. You can't *possibly* watch it - and watch them cranking the torso around by the rods - and compare it in *any* way to VBS."

I don't know how you meant this but to my eye, you seem to be appealing to "yuck" factor.

I am a scientist though not in a medical field. I watched more than half the video before I had to go to bed last night. I look forward to seeing the rest.

I was impressed with the skill and confidence of the surgeon who was able to conduct a Q&A session while the surgery was going on. Did you catch the very low morbidity statistics he mentioned?

There is NO CORRELATION between how much "cranking" you perceive as a non-surgeon is done and whether or not is not more efficacious in the long term than other surgical options. Either the principle of the surgical approach is sound or it isn't. I just don't see the point of considering any "yuck" factor when discussing this. I had a ruptured ectopic wherein I lost almost half my blood volume into my belly. When they opened me up, it must have been a very high "yuck" factor situation. Still they managed to pull me through.

If you meant something other than "yuck" factor then I missed it.

[MATJESNIC]

Pooka,

Her main curve was thoracolumbar. If your daughter only has an upper curve in the top part of her back, then there is a good chance she won't notice much difference in flexibility after her fusion because it is the lower back that is doing so much of the bending.

Children are usually cleared to go back to "normalcy" after 6 months to one year. But there are still certain activities that some doctors advise against. Most include activities where there could be a great fall, such as horse back riding. However, some go back to that nonetheless. Some tell their patients that they should never go on a trampoline again. In other words, there will still be a fusion and hardware in your daughter's back no matter where her curve is. Because of that, I think there will always need to be a little more caution exercised where she is concerned. I don't speak from experience. Because we are still new at this. We are only 5 months post-op. Maybe others can shed some more light in this area.

[Pooka1]

Pooka,

I'm throwing in the towel.

You seem to already have your mind made up, regardless of whether you have the facts. You don't want to hear the facts from the fused group here OR successful VBS cases.

No I have not made up my mind. I mentioned twice I will be emailing Janet at the Philly Shriners.

Maybe the pointedness of my questions made it seem like I made up my mind.

Maybe the fact that what you are relating doesn't seem to agree with what the orthopod and the surgeon tell me.

Who knows.

Thanks for your input. I'll report back what the surgeon says in response to some more pointed questions.

[Susie*Bee]

I would ask you how many curves your daughter had and where except I would have no idea how to interpret that information! So I won't.

Pooka-- I'm not sure what you meant by that, but if you're not sure of the location of the vertebrae, here is a link to view them. You can click on the levels to see-- I thought this diagram was kind of good because it shows a woman's form... So, for instance, if you click on T2 and see where that is, then click on L4 and see where that is, you can see how long my fusion is-- or whatever fusions other people mention. I don't know if this helps you out or not, but thought I'd try...

http://www.thegoodchiropractor.com/i...ive_spine.html

Your daughter must have her curve in the thoracic area, and fusion in that area would cause very little change in flexibility because the ribs already hold that area from flexing much.
__________________

[Pooka1]

Pooka-- I'm not sure what you meant by that, but if you're not sure of the location of the vertebrae, here is a link to view them. You can click on the levels to see-- I thought this diagram was kind of good because it shows a woman's form... So, for instance, if you click on T2 and see where that is, then click on L4 and see where that is, you can see how long my fusion is-- or whatever fusions other people mention. I don't know if this helps you out or not, but thought I'd try...

http://www.thegoodchiropractor.com/...tive_spine.html

Your daughter must have her curve in the thoracic area, and fusion in that area would cause very little change in flexibility because the ribs already hold that area from flexing much.
__________________

Thanks for this.

I meant that I don't know what having one curve in location X VERSUS two curves in locations Y and Z VERSUS having three curves in locations A, B, and C translate into in terms of recovery time, time back to school, etc.

I can only tell you that both the orthopod and surgeon say her bending won't be affected.

Thanks to you and everyone for your posts. And best of luck to all patients.

[nate03]

Hi

I can completely relate that the thought of our children needing ANY surgery is scary. I did decide to have my son go the VBS route - I did not feel confident that he would comply with wearing his brace until he was 19 (which is when he likely would have finished growing) and the fusion surgery "scared" me into feeling like we needed to TRY something else.

Every child is different - but several children I know have returned to school 1 Week Post-op - this just happened this month.........He flew to Philly Sunday, had surgery Mon & was back to school the following Monday...........This is NOT the case for most of the kids - my son missed 12 days of school total including Pre-Op. Also, perhaps your daughter could have the surgery over the summer, or the week before or after a school vacation. The doctors are very understanding & just so long as you can find a local ortho to work with them, I am sure your trips back to Philly could be very limited.

I am not trying to talk you into vbs - I completely respect every parent's reasons for choosing various treatment options, I just wanted to share some info from my recent experience.

Here are some links that offer more info about VBS

Boston Children's Hospital:
http://www.childrenshospital.org/cli...0Flevel17.html

Vertebral Stapling Support Group
http://www.vertebralstapling.com/

A New Video about VBS - Parent's Perspective
http://www.youtube.com/watch?v=n6GmX3K7FIs

I wish you the best of luck with your decision.

-Cara

_________Mom to Nathan Age 11_____________
Diagnosed 24 deg. in July 2007, progressed to 38 deg. by August 2007
Boston Back Brace 8/07 – 12/07
VBS 12/10/07 Boston Children's Hospital
Dr. Betz/Dr. Hresko
40 Degrees before VBS
25 Degrees After VBS

[Pooka1]

Cara,

Thanks for those links.

Can I ask if the correction from 40 to 25 is about average for VBS? Apologies if this is in one of the links which I will certainly read.

What is the upper end for long-term stability and very low incidence of progression after growth is finished?

I don't know what the fusion correction for S will be (she's at ~48 now) but I thought it was going to be very near zero. Is that correct for single curves of that magnitude in the thoracic region? (another question for the surgeon but just in case anyone knows.)

Thanks for your post.

Sharon (I'm going to start using my name)

[txmarinemom]

I certainly didn't intend the "yuck" you into "compliance", however, the fact you suggest so - and that's all you carried away from those photos (not the pain, not the big block of fused vertebra, not the risks associated with the surgery) - certainly exemplifies why I am DONE with input on this topic.

Best of luck.

Pam

[nate03]

The rate of correction really varies - but correction is actually an "added bonus." The real goal of the staples is to hold the spine from getting any worse to the point of them needing fusion (50 degrees or so)..............But most kids get some correction - sometimes immediately after the surgery, and sometimes the correction occurs during a growth spurt - when the staples are stabilizing that side of the spine.

I would definitely encourage you to get in touch with Janet/Dr.Betz - even if VBS doesn't turn out to be the right treatment for your daughter (because of her medical status or it just isn't something you think is right for her) at least you will always know that you tried your best, and didn't leave any stone unturned - that is all any of us can do

Also if you are interested - these 2 articles are about my son Nathan:

BEFORE:
http://www.capecodonline.com/apps/pb...0301/-1/LIFE03

AFTER:
http://www.capecodonline.com/apps/pb...0301/-1/LIFE03

-Cara

_________Mom to Nathan Age 11_____________
Diagnosed 24 deg. in July 2007, progressed to 38 deg. by August 2007
Boston Back Brace 8/07 – 12/07
VBS 12/10/07 Boston Children's Hospital
Dr. Betz/Dr. Hresko
40 Degrees before VBS
25 Degrees After VBS

[MATJESNIC]

Cara,

I just read the article about Nathan. He's adorable. I wish him and your family all the success in the world. I am so happy he can be a kid without that added burden. You must feel so relieved.