Scoliosis Boot Camp

[hdugger]

That's an odd request. Although I occasionally see a parent "show off" their kid's results, I don't think that I've ever seen someone asked to post before and after radiographs. I think Pooka sometimes just goes all research scientist on us and wants to start pouring over xrays.

Anyway, congratulations again, thanks for sharing your story, and welcome to the forum.

[Pooka1]

That's an odd request. Although I occasionally see a parent "show off" their kid's results, I don't think that I've ever seen someone asked to post before and after radiographs. I think Pooka sometimes just goes all research scientist on us and wants to start pouring over xrays.

Anyway, congratulations again, thanks for sharing your story, and welcome to the forum.

Why wouldn't she want to show off the results of her daughter's efforts at PT? Maybe others could use the results to decide if they want to try PT.

Certainly this is voluntary but if it turns out there is a trend with mainly surgical people posting before and after radiographs then that is a result in itself.

[hdugger]

So, I haven't been to North Carolina, but in Oregon, that sort of question right off the bat is considered . . . oh . . . odd . . and intrusive. It's kind of like meeting someone for the first time and you suddenly blurt out asking them how much money they make. Again, maybe this is how it's done in North Carolina, but it's not how we do it where I come from.

sorry again for disturbing the thread. Apparently I haven't traveled the US enough and I'm always learning new customs.

[Pooka1]

So, I haven't been to North Carolina, but in Oregon, that sort of question right off the bat is considered . . . oh . . . odd . . and intrusive. It's kind of like meeting someone for the first time and you suddenly blurt out asking them how much money they make. Again, maybe this is how it's done in North Carolina, I don't know, but we consider it rude up where I come from.

sorry again for disturbing the thread. Apparently I haven't traveled the US enough and I'm always learning new customs.

As we have been told over and over again lately, this forum is to help people with treatment choices. How are people going to be helped if they don't see evidence of efficacy for the various treatments that claim to reduce curves? Clairvoyance?

Is there any reason to suggest radiographs are NOT necessary in helping people decide? Are you suggesting people are trying to hide something???

By the way, I am in no way, shape, or form a spokesmodel for NC. If nominated I will not run; If elected I will not serve.

[hdugger]

Dropping off from the side topic.

Again, my apologies to our newcomer. I can only say that I am happy to hear that you've had success with CLEAR. We don't get many patients here from there, and that I'd love to hear more or just share stories.

We're using conservative treatment to manage my son's scoliosis. He's 24 and rapidly advanced after he was deemed to have reached maturity. He's holding steady now, and saw significant improve in his overall appearance and just general comfort with himself using a combination of massage, stretching, and exercise.

Can I also point you to some related threads? There's a poster named Tamztom who's doing really great things with exercise with his daughter. His thread is here - http://www.scoliosis.org/forum/showt...race-mentality

Please, feel free to drop by there.

[mariaf]

Why wouldn't she want to show off the results of her daughter's efforts at PT? Maybe others could use the results to decide if they want to try PT.

Certainly this is voluntary but if it turns out there is a trend with mainly surgical people posting before and after radiographs then that is a result in itself.

I don't think asking for before and after radiographs is an odd request at all, when you consider:

There are before and after radiographs in the surgical threads here;

There are before and after radiographs on the VBS site; and

There are literally dozens of before and after radiographs on the infantile/casting site.

I believe this is, as you say, to encourage others to try something that has proven to work for the children of those parents at least. I wish to also point out that the infantile/casting site promotes NON SURGICAL treatment of progressive infantile scoliosis.

I would actually think it more odd that someone DIDN'T want to show us how well a particular method (in this case CLEAR) worked for them if in fact that is the case. I'm not saying this person is lying, only that it's odd they would not want to share the results so that we could all see for ourselves how well it worked.

I am not aware of any pediatric orthopedic surgeons having seen such proof either, although I know of at least a few who asked for same. If this proof exist, why then would the folks at CLEAR want to keep it such a secret. It just doesn't make any sense.

[Pooka1]

I would actually think it more odd that someone DIDN'T want to show us how well a particular method (in this case CLEAR) worked for them if in fact that is the case. I'm not saying this person is lying, only that it's odd they would not want to share the results so that we could all see for ourselves how well it worked.

I am not aware of any pediatric orthopedic surgeons having seen such proof either, although I know of at least a few who asked for same. If this proof exist, why then would the folks at CLEAR want to keep it such a secret. It just doesn't make any sense.

Well stated.

I apologize if this new parent feels blindsided by the request to see the radiographs. Maybe Hdugger is correct that it is brusque. It just never crossed my mind that the parent would not want to post them if she has them to show off the results of her daughters hard work. I think the parent is repeating what she was told about the measurements. That of course is never the issue.

I would like to hear what CLEAR told her about how permanent the results are and if she needs to do PT the rest of her life.

Also, several years ago, CLEAR was trying to publish their results. The lead author came on here and it was obvious he could wright cogently and concisely and was capable of writing a research article. The guy was so reasonable that I offered to help in any way I could to help publish the paper. But I don't know if they ever published that or any papers showing their method is effective. And CLEAR has been out there for over ten years as far as I know.

[Pooka1]

We personally know many people who have had the rods put in their backs only to regret it. I have never talked to anyone who said they would do it again. We have had two people we have known that died from complications. One an eleven year old boy and the other a nineteen year old boy. The seriousness of the complications has driven us to non-surgical methods. I really would like you to consider the information I am posting. Blessing to you and your family and prayers for your son.

I previously wrote:

Here's another interesting thing... the article you posted is 40 cases from 1990-1992. One of the articles in that thread I posted considered 108,419 cases from 2004 to 2007. This is my point about not just relevance but representativeness. You will get the best picture from the most recent articles using the most number of cases. The history of surgery instrumentation is interesting but not relevant to treatment of your child. I mean why go back only to 1990? Why not to 1950 and only consider 5 cases?

Here's an abstract from the upcoming SRS meeting in France...

8:00-8:04am Paper #1: Recent Trends in Surgical Management of Adolescent Idiopathic Scoliosis: A Review of 17,412 Cases
from the Scoliosis Research Society Database 2001-2008
Samuel K. Cho, MD; Lawrence G. Lenke, MD; Keith H. Bridwell, MD; Abigail Allen, MD: Yongjung J. Kim, MD

Over 17,000 cases from the 2000's. These are the types of things to read to understand broad trends that are relevant.

[jrnyc]

i do not understand believing NO ONE is happy about their surgery...
this forum is proof that there are lots of patients who state they
would do the same surgery again...and are glad they did it...

i have no stake in this, as i have not had surgery...and surgery has been
recommended to me by several TOP SRS member surgeons...
my lumbar curve has gotten relatively large....thoracic curve is still under
50 degrees....
i have alot of pain...and other issues (DDD, stenosis, hypokyphosis, listhesis, etc)
but i have NOT had any spinal surgery, and have no stake in anyone's decision...

i just think it very misleading to let people think NO ONE is happy with
their surgical results...

jess

[Pooka1]

Jess that's a good point. Sometimes I just want to ask these people why they think surgery still goes on if every single outcome is bad or even most outcomes are bad. And I have to wonder if they ever have been to a surgeon who would quickly disabuse them of this notions.

I think that parent is scared of surgery which is not irrational. But that then is not a license to only look at completely irrelevant articles. It is not a license to form their fear-based conclusion and then find research articles to support that conclusion, even if they have to go back many years and even if they have to consider only a few cases with outdated instrumentation.

Surgery for kids is not like surgery for adults in that the case for surgery, especially for thoracic curves, is pretty clear in kids. Adults seem to be in a grey area much of the time. But that is not what that parent is dealing with.

[Pooka1]

The fact is I personally know two people who died from complications and I am so glad they were neither one my child.

How do you know they wouldn't have died sooner without the surgery?

[LindaRacine]

To the person who PM'd me that it appears that at least one poster on this thread is probably a plant from CLEAR, I have to agree.

Knowing two people who died from scoliosis surgery? ("The fact is I personally know two people who died from complications") I only know of one (though I never actually met her), and I know thousands of people who have had scoliosis surgery. If this poster knows so many people that have had scoliosis surgery, and has really never heard from one of them who would do it again, I would have to worry that there's someone out there doing scoliosis surgery in their area, who should not be. While not everyone I know who has had scoliosis surgery would do it again, the vast majority would. All you have to do is look at the surgical forums on this site.

[LindaRacine]

Hdugger, Thank you very much for the well wishes for our family. I have found that intensive research trumps fear. When it is my child's life that is at stake I will research every corner of the world for facts. We personally know many people who have had the rods put in their backs only to regret it. I have never talked to anyone who said they would do it again. We have had two people we have known that died from complications. One an eleven year old boy and the other a nineteen year old boy. The seriousness of the complications has driven us to non-surgical methods. I really would like you to consider the information I am posting. Blessing to you and your family and prayers for your son.

New scoliosis surgery long-term follow up paper indicates that the Harrington rod replacer, the Cotrel-Dubousset had unexpectedly high revision rate and complications are common. All proponents for scoliosis surgery were hoping that the new spinal implants would have fewer issues than Harrington rods. Unfortunately that doesn’t seem to be the case.
Link to the online abstract...... http://www.scoliosisjournal.com/content/7/1/13/abstract
There was no direct or indirect operative mortality. Furthermore, there was no permanent
neurological complication. In one case, surgical correction was stopped incompletely because
of massive bleeding, and then the correction was successfully concluded 14 days later.

According to the medical files, 21 out of 40 patients (52.5%) received one or more operative
revisions, for a total of 23 surgical revisions:

Within the first 30 days post surgery, 3 out of 40 patients (7.5%) received early operative
revision for the dislocation of hooks or rods.

At an average of 45.7 months (range 11 to 142 months), 19 out of 40 patients (47.5%;
including 2 patients with early revision) received late operative revisions.

At this occasion, we documented the revision rate of the highest significance (9 out of 16
procedures; 56%), not in the first year of introduction but rather for 1992, the third and last
year of application. Despite thorough data analysis, we could not find any explanations for
this.

The reasons were late infection (10 out of 40 patients; 25%) with the development of fistulae
(7 cases) or putrid secretion (3 cases), which was resolved with the complete removal of
instrumentation after all. We documented 5 out of 7 fistulae at the distal end of the
instrumentation. The average time until revision was 35.5 months (range 14 to 56 months)
after CD instrumentation. There were no bacteriological findings of any pathogens after a
maximum time of cultivation of 48 hours.

Furthermore, complete implant removal was necessary in 8 out of 40 patients (20%) for late
operate site pain (LOSP). No infections or non-unions were detected intraoperatively, but
there was a partial implant loosening in the caudal section of the implant in 6 cases, including
corrosion in 2 out of 6 cases and broken cranial transverse connectors in 2 other cases. The
average time until removal of instrumentation was 62.7 months (range 18 to 146 months)
postoperatively.

Moreover, one more patient received partial device removal for prominent instrumentation 11
months postoperatively.

Therefore, only 22 out of 40 CD instrumentations (55%) were still in situ.

The statistical analysis showed only tendency but no significant influence for the distal end of
the instrumentation: 8 out of 16 patients (50%) with instrumentation including lumbar level 4
or 5 received implant removal for infection or LOSP. On the other side, 10 out of 24 patients
(41.7%) with distal end of instrumentation until lumbar level 1, 2 or 3 received implant
removal. This difference was not statistically significant (p > 0.05). Moreover, the statistical
analysis showed no significant influences for the removal of instrumentation compared to
patients with instrumentation still in situ (18 versus 22 patients) for e.g. sex, type of curve
(right thoracic, double or other curves), or other demographic parameters.
Rather scary that in 45% of patients the implants had to be removed. And that most revision surgeries had to be done after 1 to almost 5 years because of late infections.

One really has to wonder about the skill of the surgeon who placed those CD rods. One surgeon does not an industry make.

[Pooka1]

Ironic if HDugger was apologizing to a CLEAR plant for my posts. LOL.

[mariaf]

i do not understand believing NO ONE is happy about their surgery...
this forum is proof that there are lots of patients who state they
would do the same surgery again...and are glad they did it...

i have no stake in this, as i have not had surgery...and surgery has been
recommended to me by several TOP SRS member surgeons...
my lumbar curve has gotten relatively large....thoracic curve is still under
50 degrees....
i have alot of pain...and other issues (DDD, stenosis, hypokyphosis, listhesis, etc)
but i have NOT had any spinal surgery, and have no stake in anyone's decision...

i just think it very misleading to let people think NO ONE is happy with
their surgical results...

jess

And if we are talking about teenagers/adolescents, I also know many, many parents who are very happy with the results of their child's surgery and who are doing quite well months and years later. The scare tactics used in the previous posts regarding CLEAR really turned me off. Even if those statements were true (which they aren't), why post them knowing that folks with kids facing surgery in the near future will read them?? In the days and weeks leading up to David's surgery I was such a basket case, that I think reading something like that would have put me over the edge. Now THAT is mean. Sharon has been mercilessly chastised for much less (in fact, for doing nothing wrong in many of our views) - but for those who took issue with Sharon, I have to ask where is the outrage over this??? What about those parents (of kids facing surgery) who might have been scared off of the forum?? Or don't they matter?