Scoliosis Boot Camp

[mariaf]

Mariaf, thank you so much. I had read about teathering but was under the impression that he was outside of the range where that could be considered. I will check into it.

tkare,

Your son may or may not be a candidate for tethering, but if you want to find out for sure, I would fire off an e-mail to Janet Cerrone (see her contact info in my signature). Feel free to say I suggested that you conact her. She may even be able to speak to the docs and give you a preliminary recommendation this way. Of course, if she feels it's worthwhile, she will suggest that you bring your son in for a thorough eval.

How much growth do you suppose he has remaining?

[Pooka1]

Maria, thanks for mentioning the tethering. I had forgotten to mention that.

[flerc]

Flerc, very interesting article, I had read about that wedgeing being invsetigated by some Shriners docs but I am not sure which ones. I just wish science would catch up faster, the one thing we dont want to do is wait to long and risk him having to be fused further into the lumbar area. I know many adults have this surgery, but it seems there is a time window where the recovery is much easier and the correction better as well as the ability to fuse less is better in kids.

Tkare, is good for me to know this article may be useful for you. We need information!.
The external fixator was used to achieve the incredible reduction of that girl. I didn't find yet anything about it used in scoliosis.

Certainly is a very difficult decision.. I believe you should to know his Riser, so you may have some estimation about how much might he grow. I suppose it would say you about how many vertebras more would be needed to be fixed if progression not stop. I believe (maybe I'm wrong) this is the only crucial issue vanishing the time needed to decide.

If not so many vertebras need to be fused now, the irreversible (at least up to now) rigidity may be not a big problem.
You should to consider the other negative issues, but certainly if this is the case (few vertebras now, probably many more in a short time), taking this kind of surgery now, may be considered a reasonable option and probably the best. Of course is only my thought.

[flerc]

Hi Tkare, do you think I'm wrong or the 'external fixator' is a method by their own.. and also a non surgical one? I know about one based in dynamic loading and bones remodeling as this article talk, but I'm sure is other different.

[jlp1]

One Story

During an appointment to check on back pain two years ago, my daughter, then 15, was diagnosed by an orthopedic surgeon with Thoracolumbar Scoliosis. The curvature was measured at 42 degrees. I felt shock and guilt. Bracing was immediately recommended with a good chance of surgery should curve progression continue. We made an appointment to have a brace made. The first available time was about 4 weeks in the future. During those 4 weeks, our family dealt with the emotional consequences, and I decided to learn everything I could about the condition. Meanwhile, her pain was becoming severe enough that it was becoming increasingly difficult for her to play basketball, her favorite sport since age 8.

In the course of my search on the web, I came across information on the Clear process. I was skeptical considering the lack of long term history and no recognition whatsoever from the medical community. But as I learned more about the prospect of success with bracing and perhaps surgery, I came to feel that pursuing alternatives was worthwhile. There was a danger of progression if these alternatives had no positive effect, but the upside of bracing and surgery was somewhat murky at best, and would still be there if nothing else helped. I canceled the appointment to make the brace.

Her first few treatments using the Clear process at a local practice offered hope, but after a few weeks, not much in the way of results. We were given an honest evaluation and no information was withheld. Since we were within driving distance, I decided to take her to Dr. Stitzel. Since he was a pioneer of the process, I felt if there was any result to be gained, she would get it there. After an evaluation of her condition, she went through the two week boot camp in December, 2011.

At the end of the two weeks of therapy, we looked at the before and after x-rays side by side, and her curve had been reduced to 28 degrees. She was pain free and we were very excited, but were also apprehensive regarding whether she could maintain it. She went on a daily program of 15 minutes of morning PT and 35 minutes in the evening and has done it every day. We made an appointment for a 6 month checkup. We returned in April 2012 and found the changes had held at 28 degrees. We were very happy and she continued to do the daily PT work. We made another appointment for a check in another 6 months. This time, the curve had progressed to 33 degrees. Perhaps that was due to all the contact from tournament basketball. Perhaps it wasn't. Still pain free and a lot better than at the time of diagnosis, but going the wrong direction.

Dr. Stitzel recommended the one week boot camp program. So we recently took her for that program, and at the end, again comparing before and after x-rays, her curve has been reduced to 23 degrees. She is continuing the daily PT program and we are going again in 6 months for another status check.

I don't know what the future holds. The treatments and equipment were expensive and insurance paid for very little of it. It did put a financial strain on our family. Of course, we hope she can hold the gains. She is very dedicated about doing the daily program, which I feel is exceptional for a 15 -17 YO kid. Since she wanted to play ball, I felt like we had to at least try to find a resolution that would allow her to do that. Bracing and surgery could not provide that. Even if she ultimately ends up with that option, it will have been worth it for her to pursue her dream of playing college basketball. Now it looks like that is going to happen. This treatment is not a panacea (it's work), but it has eliminated her pain and demonstrates measurable progress. The process is constantly being improved. She is done growing now, so we are hopeful that she can maintain her gains and have a normal pain-free adult life without surgery. If things change, we'll respond to it. All I know is we have no plans for bracing or surgery and she is pain free, playing AAU basketball, and living the life of a normal 17 year old. This wouldn't be the case without Dr. Stitzel and the Clear process.

I'm not selling anything and have nothing to gain from sharing our story. I hope it is useful.

[hdugger]

Thank you so much for posting - that's tremendously helpful. I'd been put off CLEAR because they fell into the rut of spending a lot of time unfairly slamming surgery. So, their marketing methods put me off their therapeutic methods. It's great to hear that you've had substantial success.

I know that different people read xray's differently. My son had one xray taken by his surgeon where the Radiographer (or, whatever their title is) had measured the curve at 45, but when his doctor came in, he measured it at 65. Because you mention having xrays taken by (I think) the CLEAR center, I just want to clarify that a single orthopedic surgeon/scoliosis specialist has confirmed those measurements. I don't at all mean this as a slam towards the CLEAR folk - I just wanted to confirm that someone with specialist training was seeing the same thing.

Again, congratulations on getting such a great result for your daughter and helping her pursue her dreams. Parents - they're just the best thing since sliced bread

[tampamom]

This sounds like a great solution, glad you shared it with us. I did read up on Clear also, but have never been a big fan of Chiro. I would love to see that PT/exercise work. It just make sense to me that it would, at least for my son with AIS. And being a committed basketball player, your daughter must have already be quite strong and fit getting her first Scolio curves, and still.... Not like my son who has just sat at the computer all day and withered away, so dad seems to think

I too was curious who Xrayed her the 2 or 3 time or better yet, WHO remeasured her curves? It seems like some folks on the board mention curves using a different system. Have you gone back to the Ortho/Scoilo specialist for a followup? If so, were they supportive and happy for her curve improvement/arrest, giving credit to Clear? Probably just thought is was coincidence.

Keep working at it and being proactive, all the best!

-C

[Accina57]

Fighting Scoliosis With Courage!

Our daughter Caitlyn was10 when she twisted her ankle. We took her to the Podiatrist and we found out after an extensive visit that she had a very serious case of scoliosis. She was referred to an orthopedic doctor at Akron Children’s Hospital. At the initial exam it was determined that her thoracic curve was 54 degrees and the lumbar curve was 32. She was in two different provident back braces at night for almost 5 years. Her curves continued to worsen. She was then scheduled for back surgery at Akron Children’s Hospital and three different times the surgery was cancelled due to asthma weakening her body. We were told she would have to wait until her body was healthy enough to be able to schedule the surgery again. She struggled with poor health for the next 5 years.

In July 2011 Caitlyn had a severe asthma attack that left her heart and lungs in a weakened condition. After two weeks of medication and asthma treatment we were told we would have to consider the back surgery again because the curves had worsened to 78 thoracic and 54 lumbar. Not knowing what to do because of the extreme high risk of surgery, we turned to our family chiropractor. He said he never recommends surgery but this case looked like it would warrant it. We were at a loss and did not feel surgery was the answer. After days spent in prayer for guidance we searched the internet for non-surgical methods of scoliosis treatment. We found many but few made sense. We found a video of a girl on youtube that was treated with the C.L.E.A.R. Method with very astonishing results. I took the video into our Chiropractor who advised us that there were many methods out. Many were really bogus and were there to take your money. He said he would take a look at the video for us. At the very next visit he told us that the C.L.E.A.R. Method was the real deal and we should get her to the nearest treatment center as soon as possible.

The closest center to us was Lancaster Spinal Health Center in Lititz PA with Dr. Clayton Stitzel. We called the center and scheduled a phone consultation with our doctor and Dr. Stitzel. We were very impressed with the conversation and were given the opportunity to talk to two of Dr. Stitzel's current patients. We felt very comfortable with the information that was shared and the results they were seeing. We then made our appointment for a two week intensive treatment.

We travelled for 6 ½ hours to get to Lititz. Upon arrival we found the staff and Dr. Stitzel very professional and welcoming! The first week we saw amazing results. The very first night in the hotel Caitlyn experienced no pain in her back and head. This was awesome since she had been in extreme pain over the last few years to the point she rarely went to bed without a headache or back pain. She had discomfort but no real pain. We were truly praising God! By the end of the week I could feel her shoulder blade which had been pressed so tight to her back you could not see it let alone feel it.

We continued on through the next week just to receive more improvement. Her thoracic curve was reduced to 54 and her lumbar to 32. That wasn't the best news; her head tilt was almost gone. Her self-esteem was greatly improved. When we got home after the second week our daughter-in-law noticed something we hadn’t. She said Caitlyn looked taller and straighter. We wanted to confirm what we were seeing so we measured her, not once but several times. She was indeed 2 inches taller. When we returned to church that week we were stopped by so many people who could not believe the physical difference in Caitlyn. She was walking so straight and no head tilt.
She continued her treatment at home with a traction chair, specialized exercises and equipment. She was very faithful at her daily routine and returned to the Lancaster Spinal Clinic in March of 2012 and had retained the progress she had made. In September of 2012 she returned to the clinic for the third time only to see some slight regression. We attributed the loss to the fact she had a few setbacks in her health that made doing her treatment at home very difficult. She was due back at the clinic in March 2013 and we are working to make that happen.

We have talked to many different parents of patients over the three visits to constantly hear the same thing. They were very satisfied and everyone has seen results.

I can’t say enough about Dr. Stitzel, his staff and the C.L.E.A.R. Method. Our family Chiropractor told us he felt Dr. Stitzel literally saved Caitlyn’s life. Her neck was near collapse which would have led to paralysis or death. If anyone would like to see her x-rays or medical results please see contact me and I will share her caringbridge page. We would love to share with you. If we can keep any person from having an unnecessary surgery it would truly be a blessing. What do you have to lose trying the method? Surgery is PERMANENT, irreversible, costly, and limiting. Most surgeries end up with another surgery and possibly more.

Some people are looking for medical proof. What more do you need when you see physical progress like that. I would say the medical proof is in the x-rays. When our doctor x-rayed Caitlyn again and saw the same results as the clinic showed I need no more proof.

We will continue with Dr. Stitzel and his clinic and look forward to the progress she makes over the years. We highly recommend the clinic because of the cutting edge methods and the very caring people. The attention to detail and personal care you get with each visit has more than convinced us we were doing the right thing.

Trusting In Christ,
NLH

[hdugger]

It's so hard watching things go wrong for our kids. I have a son with scoliosis. I can't imagine how hard it would be if he had other serious conditions on top of that. I'm so glad to hear that your daughter is doing better and more comfortable.

I wanted to respond to one thing, and I think I said the same thing to Dr. Stitzel when he was on the forum. This statement "Most surgeries end up with another surgery and possibly more." is simply not true, and I think is overall very frightening to a parent considering surgery. The majority of surgeries in teenagers do not require a second surgery, and many, many teenagers just have a single operation and don't spend much time ever thinking about scoliosis again.

I'm really glad you found something that worked for your daughter, and I wish she and you the best.

[hdugger]

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.

I am sorry to hear that your friends have had such bad experiences, but I have to admit that I'm not going to read the quoted study before responding. In four years on two scoliosis forum, I have heard of exactly one case of someone dying of complications. Again, I am so sorry to hear about your friends, but I must emphasize that this is not a usual outcome. It is also very uncommon to hear someone say that they regret having the surgery - we're just talking about that in another thread. Not at all that some people do not have complications, because some certainly do. But, I have only very rarely in four years hear someone say that they regretted the surgery.

It would be more persuasive, for me, if you just talked about your own outcome with conservative treatment instead of saying frightening things about (again, I'm sure, very sad cases for you) some things that almost never happen during surgery.

[mariaf]

In four years on two scoliosis forum, I have heard of exactly one case of someone dying of complications.

Similarly, in my 6-7 years on three different forums, I have heard of one case as well. Fortunately, the majority of adolescent surgeries I have heard of haven't had any major, long-term complcation. Still, I find fusion surgery something to take VERY seriously and some recoveries have been longer and more difficult than others. But in the end, the vast majority of these teenage patients have come through with flying colors.

Accina57 - I am very sorry to hear about your friends. I would ask, though, that you be mindful and considerate of other readers. Think about the parent whose child is scheduled for surgery in the coming weeks and how they would feel after reading your post.

I would also disagree strongly with your statement:

"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."

I think most people would agree that we have come a long way since the Harrington rod days and I don't believe any of us would want to go back to them.

I wish you and your child the best.

[Pooka1]

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

Hi. Very good that you are trying to come up to speed on these issues.

That article is about surgeries for AIS plus spondylodesis and instrumentation that was new in 1990-1992. I am not sure that instrumentation is still used. I think I recall this article. It is about how two surgeons are trying to learn this surgery over two decades ago. These were the first 40 cases they did or something close to it. It is relevant to documenting the of history of scoliosis surgery but I am not sure it is relevant to anything going on today with surgeons who have done many many more procedures than those guys had at that point.

Here's a thread with some other articles on present day complication and revision rates which are relevant to surgery now. Can you give us your opinion about those please?

http://www.scoliosis.org/forum/showt...ht=cornerthree

[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.

[hdugger]

Sorry, I think it may feel like we're piling on a little bit, but I think we just want to make sure that someone new coming through has a clear picture of what we've seen on these forums in general.

I wanted to say one other thing. I also have a child (well, a young adult) with a largish curve. His is somewhere around 50 or 60 degrees. Once a curve gets that big, gravity or some bone restructuring starts to take over and it's sadly common for people to get to maturity with a curve that doesn't need surgery only to have their curve progress during adulthood enough that they end up needing surgery down the road.

I only mention this because I want you to know that, if that happens, if, down the road, your daughter ends up needing surgery, that she's very unlikely to have anything terrible to happen to her because of it. No matter what happens, surgery or not, she'll be fine. I just didn't want you to worry needlessly about that.

[Pooka1]

and her curve had been reduced to 28 degrees.

her curve has been reduced to 23 degrees.

Hi. Do you have these radiographs? Have you had an orthopedic surgeon measure them?

Might it help to have your orthopedic surgeon measure these also since you are paying CLEAR so much money?

There is a before an after thread for results of surgery but I think there should be one for results of conservative and alternative treatments also. It would be a contribution if you posted your daughters before and after radiographs to that if you were okay with that. Thanks.

http://www.scoliosis.org/forum/showt...Pictures-Xrays

For example, I have posted my daughters' before and after radiographs.