Dr. Woggon - Clear Institute treatment [Archive] - National Scoliosis Foundation Forums

The Professor

04-13-2006, 06:25 PM

I've never heard of the "asymmetrical loading" being reversed. When one's vertebrae are wedge shaped, nature isn't going to reshape them.

--Linda

Actually, bone is constantly being remodeled. For instance, people who do repetitive motions day in and day out (manual labor or bodybuilding) will undergo bone growth at the attachment points for the muscles that are being developed in tandem with the repetitive movement. A larger muscle needs a larger insertion to pull on. Granted, the growth will be nowhere near as substantial as you would see in someone who's not yet reached skeletal maturity, but there is some remodeling and reshaping of bone that does occur, just as it does occur when a bone is broken and reset.

I don't think this force would be substantial enough to reshape a wedged vertebra, though. My point from the earlier post is that while physical manipulation may temporarily "correct" the curvature, until the forces that drive the spine into that shape (wedged vertebrae, unequal muscle strength, etc.) are addressed, any correction that's seen will revert back to the original state.

gerbo

04-14-2006, 10:08 AM

until the forces that drive the spine into that shape (wedged vertebrae, unequal muscle strength, etc.) are addressed, any correction that's seen will revert back to the original state.

so, how do you think inequal musclestrength drive the spine into a curve and what could one do to address this??

katblack

04-14-2006, 11:05 AM

Professor,
Thank you very much for answering my question. I have a better understanding of this now.

The Professor

04-14-2006, 06:41 PM

so, how do you think inequal musclestrength drive the spine into a curve and what could one do to address this??

Nobody's really sure whether asymmetrical musculature can cause spinal deformity, or if it's a secondary effect of whatever's driving the curvature.

Once the curve is set in place (especially in an adult), your musculature has developed more or less to compensate for the curvature in your posture. We all know about those little "postural adaptations" we all have that are unique. Those muscular adaptations will likely want to "fight" any correction made by physical manipulation to the spine and pull the spine back into the scoliotic curvature. But, as body building can develop your biceps, I'm sure that the back and spinal muscles can be "retrained" with enough effort, but this is something that would have to be done constantly.

Karen Ocker

04-15-2006, 04:34 PM

What are you a professor of????

livingit

05-23-2006, 11:08 PM

gerbo

05-24-2006, 07:01 AM

I will keep you posted of my results, and would like to hear from anyone who has undergone this treatment.

please do so,

why do you feel their method makes sense?

gerbo

markymark

05-29-2006, 02:51 PM

The Professor

05-30-2006, 09:35 PM

I was impressed by the theory and was shown before/after x-rays of results. I was also x-rayed. I have a typical S-curve (not sure the degrees), my head thrusts forward and my neck does not curve normally. I was x-rayed with weights on my head. The weights forced my head into a normal position to compensate for the weight, and the x-ray showed that they caused my head to sit back and my neck to curve normally.
I'm still unconvinced that chiropractic treatment gives any more than minor, temporary correction. A chiro tried all the head-weighting and shoulder weighting treatments on me, even had me don the weights (heaviest he had) and took another spinal x-ray to see how much correction he thought was possible.

Total correction possible, according to the x-rays? 0 and 0 degrees.

markymark

05-31-2006, 02:03 PM

Professor,

I understand your skepticism. I learned of the treatment from reading the post by denverbackchic. I went to several chiropractors over the years with no success. I wasn’t really looking to correct the curve since it really isn’t that bad; I was hoping to get rid of the pain. There was one Osteopathic doctor that seamed to temporarily help my pain a little but it would just come right back. I’ve spent thousands on back care. I have two inversion tables (one is just from the waist down) that do give me temporary relief. I have yoga dvds and books. Most of it is out of desperation which leads a lot of us to anyone who has a plan.

I’ve done the x-rays that you lean side to side. My curves do improve when I lean or bend forward. I’ve also been x-rayed with weights. My curves improved with the weights also. I think that was one of the ways that my chiropractor determined if the treatment would help. He was right. My curves improved after 6 weeks of exercises and adjustments. One morning I came in and I said that my back hurt after I slept on my stomach. He told me not to sleep on my stomach. That seemed to help also. All I can say is that to date, my pain has improved, and my latest x-rays have improved. The improvement is noticeable when looking at the before and after x-rays. I don’t know if it will last, but I’m hopeful. It probably doesn’t work for everyone since we are all different. My chiropractor said to hope for continued gradual improvement of a few degrees over the next few months and that such an improvement is a little unusual for 6 weeks. My visits have also reduced from three times a week to twice a week.

Good luck to you and to everyone! I’ll keep posting my results.

The Professor

05-31-2006, 09:05 PM

How similar is the clear institute method to the Schroth method?

markymark

06-01-2006, 05:33 PM

I’ve never heard of the Schroth method until now. Information on the Clear Institute can be found at www.clear-institute.com which I’m sure you already know. I couldn’t find any detailed information on the Schroth method. Is there a good web site for it? The clear institute and ASCO claims rely some on vibration. Not sure if that is different from Schroth.

tmom

06-01-2006, 06:36 PM

Somebody already posted this reference somewhere:
http://www.erikamaude.com/article.pdf

There are some more:
http://www.sosort.org/documents/tpdr100218.pdf

There are pretty good books, but unfortunately only in German.

And there are other discussions about Schroth, just search forum.
But if you have any specific questions… we went to Schorth clinic (Germany) in February this year.

LATigner

06-02-2006, 10:05 AM

If you search on Schroth on the forum there should be posts about a Schroth clinic that opened this year in the US - I think it was Minnesota or Wisconsin.

The Professor

06-02-2006, 09:17 PM

And there are other discussions about Schroth, just search forum.
But if you have any specific questions… we went to Schorth clinic (Germany) in February this year.
From what little I've read on the subject, the Schroth method involves traction combined with exercises to strenthen the back and abdominal muscles, which is supposed to "hold" the correction achieved through traction, correct?

Do they make any claims as to whether or not this is effective in adult patients?

Karen Ocker

06-03-2006, 06:56 PM

I've read many of the English abstracts/studies in the National Library of Medicine
on-line:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15457752&query_hl=5&itool=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15457754&query_hl=4&itool=pubmed_ExternalLink

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12745892&query_hl=5&itool=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=9689236&query_hl=5&itool=pubmed_docsum

Their treatment is primarily adolescents-though I've heard of adult trials.It consists of simultaneous: IN-PATIENT intensive rehab/physiotherapy, chiro and BRACING followed by at-home continuation. The published results are better than just bracing as seen here--HOWEVER--some patients STILL need surgery. In other words, their patients need surgery less often. They DO have a long follow-up of their results as opposed to say-Clear Institute which published a small study and short follow-up.

What gives(Schroth) credibility in my eyes is the continuing follow-up OVER MANY YEARS of their patients. Also they compare their results to untreated patients in another country-Ireland in one study. Their treatment is VERY intensive and time consuming and part of it is INPATIENT.

What burns me up about Clear Institute and other "promising" alternatives here is: small number of patients over a few weeks with "great" results and NO long term studies/comparisons using a scientific method.

The Professor

06-05-2006, 08:34 PM

What burns me up about Clear Institute and other "promising" alternatives here is: small number of patients over a few weeks with "great" results and NO long term studies/comparisons using a scientific method.
This I concur with wholeheartedly. Yes, I've seen a few peer-reviewed studies regarding chiropractic and other "alternative" treatments for scoliosis, but seldom any follow-up or long-term studies. The only real long-term follow-up study I saw regarding chiropractic care showed that there was no measureable improvement maintained over the extended period.

Christophe

09-04-2006, 04:00 PM

I just got a reply from Dr. Woggon of the Clear Institute saying he could fix my curve in 1-2 weeks in Minnisota 30%-50%. Does anyone know anything about this doctor or Clear Institute? The treatment is rather expensive and seems very brief for the amount they claim they can fix.

I've been to Dr. Woggon's clinic in St. Cloud, MN for 3 separate week-long intensive treatment sessions. My initial X-ray showed a 66 degree cobb angle. After 4 days of intensive treatments (about 3 hours in the morning and 3 in the afternoon), my cobb angle as measured from x-ray was 43 degrees, a 35 percent improvement. I bought the scoliosis traction chair and faithfully did the various exercises. I returned for a followup visit 40 days later, and my gains from the previous visit had largely held -- my cobb angle measured 44 degrees before treatment commenced. After another 4 days of treatment my angle had improved to 40 degrees. This rather small improvement was disappointing, but to put things in perspective my Cobb angle was measured at 47 degrees as a teenager, and now I am 36 years old with a 40-degree angle. I was told that it is common to hit plateaus during treatment. I experienced a marked absence of back pain in the months subsequent to my first visit.

I did not return for another 10 months. I kept up with my exercises for a couple of months until the winter, at which time I stopped using the scoliosis traction chair which was installed in our concrete-floored garage (note if you get one it vibrates the whole house unless on a concrete slab). It was too cold in my garage to exercise, and it became easy to slack off on the other exercises as well. Various familiar back pains came back after many months of discontinued exercise, and eventually I went back to Dr. Woggon's clinic.

My curvature had reverted back to 60 degrees. After 4 days of treatment we got back to 41 degrees, and I have a renewed committment to keep up with the program (and get a space heater for my garage).

For someone of my advanced curvature, a 2-3 year course of treatment along with a daily exercise regime is what it is expected to take. Dr. woggon told me of one example of a reduction in curve from 60+ degrees to 13 degrees over 3 years. It is not a quick-fix, though the initial changes can be quite dramatic.

I build statistical software for a living and understand people's concerns about the lack of long term outcome studies. The problem is these methods have really only been used over the past 2-3 year. My 40 days of holding my improvements with exercise are encouraging but certainly not definitive. Ideally one would live near to a treatment center where more regular care and measurements can be done. Dr. Woggon does not want to work with people who don't do the exercises as it is a key component of rehabilitation.

In my last visit a woman in her mid-forties had a correction from 53 degrees down to 35 degrees over the same week that I was there. She was overjoyed. The reduction in rib hump for both her and me was also noticable in before and after photographs.

What I appreciate about this treatment is that it is quantitative -- you can measure your improvement or lack thereof. My biggest problem is not having a local chiropractor who has the training in these techniques. A week of treatment there costs $1500, plus travel expenses and some one-time expenses of buying equipment. I read some statistic that scoliosis patients live an average of 14 years less than the rest of the population. The costs seem to be a decent value if I can get back even some of those years.

I have tried many other treatment modalities for my scoliosis (including the watch and wait technique of my orthopaedic surgeon who just watched as my curve moved from 10 degrees to 47 degrees). There is only one other modality that has given me any postural improvement -- spinal touch, but that is a different story.

Check out the article showing before and after x-rays of scoliosis patients that were treated by Dr. Woggon and colleagues at:
http://www.biomedcentral.com/1471-2474/5/32

Dr. Woggon and his other colleagues at the Clear Insitute continually refine and improve their methods. The results they are getting in a week used to take six weeks for them. It is a lot of work, and takes ongoing committment and dedication, but your health is worth it.

Christophe

LindaRacine

09-04-2006, 05:46 PM

Hi Christophe...

This is a really valuable post. Thanks. I hope you'll keep us updated.

It has long been my opinion that one can temporarily reduce one's curve through aggressive exercise, but that the curve(s) will return when the exercise ceases. So, if one is the type who will stick with a treatment for the rest of their life, it may make a lot of sense. Unfortunately, most of us are unwilling to spend the time. I personally do 3 PT exercises every day. They take me less than 5 minutes. If it were more time, I'm almost certain that I wouldn't stick with it in the long term.

Regards,
Linda

Sherie

09-04-2006, 11:24 PM

Hi Christophe,

This is very exciting news for me, my daughter is scheduled to see Dr. Woggon in a few weeks. She's 14 now so my goal is to hopefully get her curves(which measure 33/52) down and keep them under control at least until she reaches maturity. I think a girl her age is still flexible and will benefit from this sort of treatment. Of course, I am concerned about keeping up with the regimen on a daily basis, that's going to be the tough part. We are seeing a chiro 3 times a week now who is willing to go along with any treatment that Dr. Woggon suggests. Dr. Woggon also told me approx. 2 years on the program. She is also wearing the Spinecor brace which I'm hoping will at least help hold any correction we get.

It may be, she does all this, reaches maturity and her curve still progresses or regresses to where it was originally, but not doing anything at all? That's not an option. I will at least know that I did the best that I could for her and surgery is always there, it's not going away. And if the plan works, that would be the best possible outcome of all.

By the way, any tips on how to keep a 14 year old motivated???
She's a really good, sweet girl, but still a teenager. I'll have to withhold food or something I guess. :rolleyes:

Keep up the good work,
Sherie

gerbo

09-05-2006, 09:46 AM

It has long been my opinion that one can temporarily reduce one's curve through aggressive exercise

I think (for what it is worth) that in the mature spine exercise works by improvement of posture, and as long as you are able to "hold yourself straighter" the spine will look better on x-ray, and I suppose, in effect, your scoliosis is less. Maintaining this straighter spine might have some benefit in reducing deterioration.

The key to improvement in the immature spine has to be the correction achieved by the brace, as long as worn most of the day/ night. It is tempting to think (hope) that there are forms of physical therapy/ exercise "out there" which can contribute to this, but any improvement achieved must be maintained by the brace for it to have any chance of becoming permanent.

My feeling is that not enough effort is made to achieve more substantial reductions of the curves through bracing and little seems to be known about how to build a brace which produces the maximum possible reduction. Brace building is considered an "art" rather than a skill

The following link http://skoliose-info-forum.de/viewtopic.php?t=957 brings you to a table which I found on a German Scoliosis forum, and shows what kind of initial correction is being achieved there by a certain orthotist.(Rahmouni)

Note that where in younger teenagers 100% correction is often achieved, even in relative "older people" significant improvement seems possible.

Key question obviously are how difficult and painful these braces are, and how cosmetically acceptable, and wouldn't it be lovely to see some outcomes as well, to confirm that aggressive bracing achieves better results!

Sherie

09-05-2006, 01:59 PM

I have looked at the Rahmouni website and seen the results, I also wondered how comfortable is a brace than can achieve that kind of correction. Bzebra is the German lady who had significant correction through the Schroth method as a teenager and has maintained it through her 30's by wearing a Rahmouni-made brace only at night. I'm not sure we have anything comparable in the States, but there is an orthotist who makes Cheneau braces, I don't know much about them, couldn't find a whole lot on the internet except for pictures. Our best chance is continuing with the Spinecor and getting adjustments as necessary, at least I know she'll wear it!

Christophe

09-06-2006, 12:16 PM

By the way, any tips on how to keep a 14 year old motivated???
She's a really good, sweet girl, but still a teenager. I'll have to withhold food or something I guess. :rolleyes:

Hi Sherie,

I would think that the best motivation for your daughter is self-motivation. The more she adultly takes ownership of her own health the better. This is not like going to music lessons because your mom tells you so. If minimizing the amount of pain and future health problems she is likely to suffer is not motivation enough, I remember as a teenager the misery of having a poor self-image. I don't recall ever talking to my parents about it as a teenager, and perhaps your daughter hasn't said anything, but chances are that deep down there is plenty of unexpressed (and unexpressable) negative feelings about her body. That she can personally do something about it should be empowering and motivating.

As a side note, I did do some therapy with an osteopath as a teenager, which in retrospect was totally wrong for my condition. I was completely dedicated to following the program, only to see my condition worsen dramatically. I felt angry and betrayed and completely demotivated. The dramatic early results your daughter is likely to see with Dr. Woggon should be heartening, but it would be good to set expectations that there will be setbacks and plateaus where progress will not be so noticeable.

Most importantly, in those awkward teenage years where gym class is an agony your daughter needs unconditional love and acceptance about her body. Self-criticism, body-shame and absence of self-worth may be the most insidious aspects of scoliosis to overcome over a lifetime. The loving parenting she imprints from her father and mother now will be the loving parents she carries inside of her the rest of her life.

I wish I could turn back the clock to when I was 14 and get this therapy. I hope it works out for your daughter.

Take care,
Christophe

macky

09-08-2006, 04:40 AM

Oh my goodness. I am still trying to come to grips that I will die 14 years earlier because of my scoliosis. Great way to end the week.

Macky

dizzymom

09-11-2006, 10:32 AM

Sherie,

New to site. How long has your daughter worn the Spinecor? Has it helped. I have a 14 yr that I am looking at it for. Will also ask on the spinecor forum.

Motivation..... No hope, they are slugs ;)
But we are looking at surg, so looking @everything else.

neva

Sherie

09-11-2006, 10:33 PM

Hi Neva,

I'm sorry to say that no, it hasn't helped so far. I think it has a lot to do as to how large the curve is when you start and the age of the patient. Sheena has an s-curve, it's now 40T/52L. She started wearing it in April this year and her curves were 34T/45L. As you can see, she's still progressing. She just turned 14 in Aug. The pattern I've seen on the Spinecor thread, the younger they start and the smaller the curve, the more successful they've been. I will say this, when she wears her brace, her posture is nearly perfect, you can hardly tell anything is wrong. My advice to you is if you can afford it, go to Montreal for the initial fitting, I wish I had so I wouldn't be wondering if it was done properly from the beginning. We will probably still go later this year, but I think it's too late for the brace to help. What are your daugher's curves?

Yes, slug pretty much sums it up, motivation is probably going to involve whips and chains. :D

jsully

09-17-2006, 08:37 PM

I did similar techniques with my chiropracter. It did significantly help the pain but I did not notice much difference in the curve and it does require significant commitment that I unfortunately do not have time for (full-time job and 2 small children). Also, I did not exercise as much as those in the study. I do think the wedges help with streching out your muscles but I did not like wearing a wieght on my head it killed my sinuses!
Jan

LATigner

09-18-2006, 03:46 PM

When reading the last few posts on the Clear Institute and then Sherie's posts about taking her 14-year old there (currently wearing SpineCor) I had an idea I'd like to share. I wonder if there would be some way to "jump start" the correction for our kids by having them do the Clear Institue program for a week or so and get their curves down and then put them in the SpineCor brace? Most of our kids would probably not have the committment to do all the exercises (on a permanent basis) that are necessary to hold the correction but I'm wondering if the SpineCor brace would hold it along with maybe doing a few key exercises. I don't know what all the program involves so maybe the two treatments are mutually exclusive but it would be great to get a dialog going betweent the doctors/experts for each treatment.

meagain

09-24-2006, 09:45 PM

LATigner: I've been wondering the same thing. Great minds think alike. Meagain

cristine

08-07-2007, 01:31 PM

Hi Sara, I don't know if anyone has replied to you yet since you posted last November. We just got back from the Clear Institute and had good results. What I like most about the clinic is that they do try to correct some of the possible causes of our scoliosis since most people with scoliosis have a straight neck. Over the week, the curve was put back into our necks and our spines were 'straightened' using vibration, weights and manipulation. My scoliosis which was at a 25 degree curve in my upper back was reduced to 16 degrees. My daughter who had a 30 degree upper curve was reduced to 20 degrees, and her lower curve of 45 degrees was reduced to 37 degrees. Nothing is permanent. It is up to us to maintain the progress that was made through specific exercises and using a vibration chair. There is no procedure that I know of that will "fix" scoliosis. It is an ongoing condition of the spine that may be improved through alternate methods to surgery. Dr. Woggon is genuine and has dedicated his life to understanding and treating scoliosis. For $3000 we received over 25 hours of treatment, scads of x-rays, a specific plan for exercises for our scoliosis, vitamins, and tons of exercise equipment. The follow-up report was professional and well documented. If we had the time, I would have stayed for two weeks instead of the one. But do your research and that way you will feel well-informed when making your decision.

scoliomom

08-12-2007, 07:09 AM

BETall

08-14-2007, 12:11 AM

Sherri
you may want to look into the Cheneau brace.... Several on this site are using it, along with Schroth methods of exercise.. My daughter is wearing it, and doing great... her curves started at 39'and 40' cuurrent IN BRACE xray show curves at 30'and 25'. we will have an out of brace xray in 3 months.
Thanks Scoliomom for encouraging other children and their parents to be ahead of the curve by investing their time in the combination of the Schroth Method and the Chaneau brace . I am impress .Tx for your courage on investigating and practicing another options.

Sherie

08-15-2007, 09:52 PM

Scoliomom

I appreciate the advise but we're already scheduled for surgery, she's at 65 in her lumbar (mayber higher by now). I just don't think it's prudent at this point to wait or hope for a miracle. I wish you the best, it sounds like you're getting good results.

rtremb

08-29-2007, 04:05 PM

We are seriously considering taking our 13 year old daughter - who has a severe idiopathic scoliosis - to Dr. Lawrence (Pettibon treatment) in Minnesota for a three week intensive treatment. Her curves are T50 and L48. We are wondering if anyone has had any success with the Pettibon treatment with a child this age?
(Dr. Lawrence worked with Dr. Woggon and Dr. Morningstar on a research project)

rtremb

08-31-2007, 12:55 AM

Our daughter started her Pettibon treatments today with her chiropractor here in Ottawa. Waiting to get more details for the trip to the U.S. for an intensive treatment. Really hoping this works since her curves are T50 and L48 which probably means surgery if it doesn't since she is a Risser 0.

Sherie

08-31-2007, 09:43 AM

Hello RTREMB

We went to Dr. Woggon last year in Sept. for the Clear Institute treatment. It was a one week intensive treatment that involved many different things including the pettibon weights. What they don't tell you upfront is that they don't know if this will result in a permanent correction or not. When we were finished, he gave us a 4 year plan, to a kid, that's an eternity. It was not a 15 minute ordeal either, it was a 1 1/2 hour regimen, initially 2x/day then 1x/day after 4 months. I was very discouraged to hear that, especially not knowing what the outcome would be after 4 years. I'm convinced now that there would not be permanent correction because of the severity of her curve, I believe at this point there are forces involved that can't be stopped by bracing or therapy.

I don't want to discourage you, I too was trying to do anything to prevent surgery, but before committing to anything, ask for hard evidence. See if they have xrays of patients who show definite, lasting improvement several years after stopping therapy unless you're daughter is committed to a lifelong ordeal. Ask upfront how long do they expect treatment to last. It was very costly for us and we have nothing to show except that I feel we exhausted all of our options and I can be at peace with myself that we did what we could.

She was also in the Spinecor brace, another very expensive treatment. Her lumbar curve was already about 42 when she was initially fitted. She did not get any correction, in fact, her curves increased over a 6 month time. I spoke with Dr. Couillard in Montreal, she said a lumbar curve over 40 is very stiff and difficult to treat. I really think you should consult with her or Dr. Rivard and have them fit her for the brace if they think it will help.

I truly wish your daughter the best, again, I don't want to discourage you, just wanted to share our experience.

Good luck

rtremb

08-31-2007, 08:31 PM

Sherie:

Thank you for sharing your experience with the Clear Institute. Perhaps we are clutching at straws hoping for an improvement in Esme's curves but we are sooooooo reluctant to have the surgery - no going back once that is done. If we don't try the Clear Institute we will always wonder if it would have helped. We would be happy just to stabilize her curves until she has stopped growing. We are planning to go to Dr. Lawrence for the three week intensive program. Esme is very determined not to have the surgery so doing the exercises should be okay even if it is a long time each day - maybe put on some music she likes and try to make it fun! She will be seeing the chiro here in Ottawa three times a week too.

We think we can get the Spinecor brace paid for by the Ontario Health Insurance Plan (which would be nice since we have already paid $2,800 for the night brace which didn't work for her because it was way too uncomfortable to sleep in). If she actually wears this brace it might do some good - better than nothing we think. We are close to Montreal so could go to Dr. Rivard for the fitting (my husband already spoke with him). Also there is a chiro in Gatineau, Quebec which is very close to us who has the computer equipment to do the fitting and would be able to do adjustments if needed.

It is really good to have your comments on the Clear Institute and I will share them with my husband. It is good to be able to talk to another parent who is going through the same issues as us. Thank you.

rtremb

08-31-2007, 08:52 PM

Sherie:

We have a question - did Dr. Woggon's intensive treatment actually reduce your daughter's curves? We are thinking if the curves can be reduced we will use the Spinecor brace to hold the reduction in place.

Bish

09-01-2007, 11:22 AM

Hi there. I also went to the clear institute this year in March. I understand your train of thought, as my attitude was also that if I did not try it I would always wonder later if it may have worked. My case is different because i am an adult so the likelyhood of a reduction is much less. I suppose it can't hurt to try. My only thoughts for you might be this. I think the chiro will tell you that you have had positive results and will show you an Xray demonstrating this. If I was you I would schedule an xray through the medical system as soon as you possibly can to verify the results given. The sooner the better. If you have reason to suspect that the positive results provided by the chiro were bogus, then you may not want to put your child through years of crazy treatment methods that have no validity. I am not saying they ARE invalid but it would make me a little suspect if I had exciting positive results of curve reduction from the chiro, only to have these results invalidated by an unbiased doctor the same day/week, however quickly you can get additional Xrays.
I hope you can prove my theory wrong. I wish you success. All the best, Bish

Sherie

09-01-2007, 04:16 PM

Rtremb:

I totally understand how you feel, we know surgery is the last result, but here we are. I didn't want to put her through surgery only to later wonder if there was something else we could have done. Deciding on surgery has been the most difficult thing I've ever had to do because it will affect her life in some way forever.

We did see some improvement in the thoracic region, it was clearly visible on the xrays, on the other hand, although he claimed a 20 deg. reduction in the lumbar curve, I couldn't tell at all by looking at the xray. I'm still very skeptical about that. Bish also pointed out something very interesting in another post, he said when he took his before and after xrays, he was told to hold his breath on one of them, to let it out on the other. Since I wasn't in the room at the time they took the xrays, I couldn't verify that with my daughter. The other problem was that there were no local chiro. that we could go to for the same therapy, so the home regimen is an abbreviated version of what they do in the office. They also didn't have any long term documented cases of permanent correction. From what I've read, temporary correction can be achieved by any number of ways, but holding that correction is where the problem lies. The 4 year time he gave me was a guess, he didn't really know himself, in fact, he was trying some new things out as we went and even said so. It's definitely not very scientific.

One more thing I would like to point out, an out of brace xray that's taken minutes after they take off the brace isn't a true representation of the curves. My daughter was out of the brace for one week and had xrays taken before and after, there was a significant increase in her curves. Even though they appeared to be holding, that wasn't the case at all. I believe someone else on here said Dr. Couillard even said they had to be out of brace for one week in order to get the true numbers. If I had to do it all again, I would be more skeptical of everything I was told.

Good luck with your decisions, I hope something works for your daughter.

rtremb

09-01-2007, 08:57 PM

Sherie:

Thanks for the information. We will make sure the x-rays are taken in the same way each time. So far the x-rays taken by our Ottawa chiropractor show beginning of treatment curves lower than the x-rays done at the Children's Hospital (Chiro: T45, L43, Hospital: T52, L48). We are waiting for the official radiology report from the hospital which is delayed since they made a mistake on the first report. Hopefully we will receive this next week.

We are lucky I guess to have a chiropractor here in Ottawa who is able to follow-up on the intensive treatment. Esme will have to go to her three times a week and at $19.00 per treatment it is affordable for us. My daughter's chiro in Ottawa has scoliosis herself and has had her spine fused. She has had a lot of problems with her fusion and became a chiropractor to help others avoid the surgery. She is very committed to the Pettibon system and believes strongly she can help. She has helped some other teenagers here in Ottawa to avoid surgery so we feel pretty good about working with her. She has all the equipment in her office (wobble chair, traction units, special massage beds, etc.) and we have some equipment at home too now.

rtremb

09-02-2007, 01:52 PM

Bish:
I have read a lot of your previous posts and we are feeling very unsure about taking our daughter to Minnesota to see Dr. Lawrence. It seems from your posts and those of others on this forum that the treatments don't work. This will be very expensive for us to go ($8 - 10,000) and while we would pay anything to fix our daughter's back (or even hold it where it is) we are very concerned about being taken by anyone who would take advantage of us in our current fragile state. We are interested in your opinion (and others on this forum) as to whether this Clear Institute is worth pursuing or not.

Since doing nothing is not an option we will definitely get a Spinecor brace for our daughter - she has not tolerated the hard braces at all so far.

Sherie

09-03-2007, 11:10 PM

Hi Rtremb

It's good that you have local support and the price if very reasonable. It sounds like your chiro. has very honorable intentions too, at least you feel like she willl be understanding and is not just after your money. I hope you'll keep us posted, maybe others can benefit from your experience. Let me know if you have any other questions about the treatment.

clarexp

09-06-2007, 12:25 AM

As a mother, I understand and fully support what you did. By reading many posts from different patients, I feel that everyone's body is different and react differently even to the same treatment. I guess it is because the cause is different.

I will encourage my daughter to try some non-surgical treatments. She is not 12 and still growing. We have consulted several surgeons and only one said surgery within next 3 months. Other said, 50 or 70 degrees does not make too much difference to the outcome of the surgery. So we are going to give non-surgical a try.

One thing bothers me about the surgery is, all surgeons told us that, no implications, minimum... I found it is hard to believe. With 2 steel rods in your back, no problem for the rest of your life? or the next 20 yrs - my duaghter wil only be 31 then!

Sherie

09-06-2007, 11:09 AM

Clarexp,

Dr. Lenke told us right off the bat that this will NOT be my daughter's last surgery. He mostly deals with revision surgeries so he's speaking from experience. He said there will be wear and tear on the remaining unfused areas, what he can't predict is when this will occur. It may be 10 years or 40 years, hopefully with the advances in surgery technique, it will be many, many years from now. My daughter would have a very uncomfortable life if she didn't have surgery so this is our best shot. We were also told there would not be a big difference in the outcome even if her lumbar curve progressed to 70.

As far as alternative treatments, a surgeon will not advocate it because none of them are scientifically proven to help. Our first dr didn't discourage us though, his thoughts were it couldn't hurt. He also monitored my daughter in the Spinecor brace, which ultimately didn't work. We tried the Clear Institute, went to Dr. Woggon himself, (you can read my earlier posts on this thread) and we tried pneumex therapy, also no luck. I would just advise you to approach any treatment cautiously, and ask many questions, especially when can you expect to see some improvement and if there isn't improvement by that time, you will need to decide if it's worth continuing or not. It was very frustrating for us to spend all that time, effort and money only to be disappointed over and over again.

I hope you have some success to share with us in the future, you really don't know for sure until you've tried.

clarexp

09-06-2007, 10:32 PM

Sherie,

My daughter is not in pain and she looks normal with clothes on. Her deformation is minimal I guess it is because it developed in a very short period of time. She just had her breathing test, reading was 29 compare to average of 21.

She was fitted with RIGO-CHENEAU brace 2 weeks ago in VA and now we are in WI learning Schroth method which will help her back muscle while wearing brace.

I read the story on http://members.cox.net/myspine/MYSTORY.htm; then decided to give it a try.

I will post the result in 3-4 months time when we know.

LindaRacine

09-07-2007, 12:17 AM

Hi Sherie...

I don't understand this. No where near 100% of scoliosis surgery patients require revision surgery. I would definitely question him about this statement before agreeing to surgery. I hope, if you understood him correctly, that he was just saying it to prepare you in case she does need revision.

Regards,
Linda

Clarexp,

Dr. Lenke told us right off the bat that this will NOT be my daughter's last surgery. He mostly deals with revision surgeries so he's speaking from experience. He said there will be wear and tear on the remaining unfused areas, what he can't predict is when this will occur. It may be 10 years or 40 years, hopefully with the advances in surgery technique, it will be many, many years from now. My daughter would have a very uncomfortable life if she didn't have surgery so this is our best shot. We were also told there would not be a big difference in the outcome even if her lumbar curve progressed to 70.

As far as alternative treatments, a surgeon will not advocate it because none of them are scientifically proven to help. Our first dr didn't discourage us though, his thoughts were it couldn't hurt. He also monitored my daughter in the Spinecor brace, which ultimately didn't work. We tried the Clear Institute, went to Dr. Woggon himself, (you can read my earlier posts on this thread) and we tried pneumex therapy, also no luck. I would just advise you to approach any treatment cautiously, and ask many questions, especially when can you expect to see some improvement and if there isn't improvement by that time, you will need to decide if it's worth continuing or not. It was very frustrating for us to spend all that time, effort and money only to be disappointed over and over again.

I hope you have some success to share with us in the future, you really don't know for sure until you've tried.

tonibunny

09-07-2007, 05:22 AM

Linda is right - the vast majority of scoliosis patients have their surgery, recover, and then go on living their lives. There are plenty of patients who had surgery 30+ years ago who have never needed revision surgery. The adults with problems that turn up on sites like this one represent just the tiny fraction who do require revision surgery, and most of those are because they have specific problems to do with the Harrington Rod, which is now obsolete.

If all of your surgeon's patients eventually require revision surgery then I would question his effectiveness as a scoliosis specialist!

Sherie

09-07-2007, 09:29 AM

Linda and Toni:

I hope you're right, the last thing I want is for my daughter to require surgery ever again. What I know of Dr. Lenke is he's highly regarded amongst his peers (we saw 4 doctors and I asked), performs about 250 surgeries yearly, goes to many seminars to teach other surgeons pedicle screw placement and is heavily involved in research. The rate of complications at his facility also seems quite low at 3.5% so I don't think he means any time in the immediate future.

Am I wrong in saying that the most common type of scoliosis is thoracic? In those cases wouldn't the fusion be much shorter and wouldn't involve the lumbar vertebrae? It seems to me that these patients recover more quickly and have fewer limitations from the lack of flexibility. Maybe my daughter's case is such that he thinks revision surgery is very probable, her lumbar curve involves L5 but I don't think any doctor would want to fuse that low in an adolescent.

I guess the point is you have to look at every case individually and not apply what one doctor says to any other patient. What Dr. Lenke told us may be very specific to her but I do trust he has the experience to know what he's talking about. I appreciate what you're saying and it's good to know that there are many out there who are doing fine after so many years.

MATJESNIC

09-07-2007, 09:49 AM

My husband asked the surgeon at Shriner's if he thought she would need another surgery in the future and he said it would be unlikely. Then again, he said he thought her rapid curve progression was behind us and she has been increasing rapidly.

Our surgeon at CHOP said that the most important goal of this surgery is "DO it right. Do it once. " That was not his exact quote, but it was something to the effect of "we only want to have to do this one time."

laurieg6

09-08-2007, 12:09 AM

From what I've read on this forum, Dr. Lenke seems to be an excellent surgeon who does both 1st & revision surgeries frequently. Maybe his view of future surgeries reflects the fact that he does so many revisions. The newer instrumentation hasn't been around long enough for many revisions to have occurred with it except in unusual situations.

I asked most, if not all of the surgeons we interviewed if they thought Alexander would need another surgery after this one & they all said this should be the 1st & last surgery for him. I asked the surgeon we chose, who fused two fewer thoracic vertebrae than his original intent & one fewer lumbar vertebrae than our other main choice if he was sure stopping at L3 would still prevent another surgery & he said yes. He does several spinal surgeries a week, as far as I can tell, & has been doing them for many, many years and I trust his judgment. I know every patient is different though & this is such a difficult surgery to choose (?) to undergo for both the patient & the family. We tried so many different alternative treatments before the surgery from TLSO bracing to different types of bodywork, acupuncture, etc. But Alexander's curve was congenital & most/all of the practitioners, I now realize, didn't fully understand the implications of that with their treatments.

Good luck with what you are doing Claire. I really hope it works & since it sounds like your daughter may have idiopathic scoliosis, maybe it really can work.
Sherie & Melissa, please let me know if I can help you with any information or support before or after your daughters' surgeries.

Sherie

09-08-2007, 10:47 AM

Dr. Lenke's comment wasn't based on problems with the instrumentation, it was specifically that there will be additional stress on the unfused vertebrae. Nor did he say that everyone requires additional surgery down the road, he did say my daughter would need it. I'll ask him again at our pre-op appointment if he really believes that, I don't think he says these things lightly, he doesn't strike me as that kind of doctor.

I looked at Sheena's xrays closely again, L5 is tilted slightly and L4 is wedged into it. Melissa or Laurie, is this how your kid's xrays look?

Laurie, thanks for the offer, I will be sure to ask if I have more questions. How is Alex doing? Did he recover from his fall ok? I'm just as nervous as ever about the surgery but I've really come to accept it these last few months.

LindaRacine

09-08-2007, 07:43 PM

Yes, thoracic scoliosis is more common than lumbar scoliosis, and the surgery seems to be a little easier on the patient.

Dr. Lenke does have a very good reputation, which is why I think he either misspoke, or you misunderstood what he said in terms of your daughter needing multiple surgeries. One way or the other, I think it's a good idea to question him about it, as your daughter may have some unique condition that will require something outside of the norm.

--Linda

Linda and Toni:

I hope you're right, the last thing I want is for my daughter to require surgery ever again. What I know of Dr. Lenke is he's highly regarded amongst his peers (we saw 4 doctors and I asked), performs about 250 surgeries yearly, goes to many seminars to teach other surgeons pedicle screw placement and is heavily involved in research. The rate of complications at his facility also seems quite low at 3.5% so I don't think he means any time in the immediate future.

Am I wrong in saying that the most common type of scoliosis is thoracic? In those cases wouldn't the fusion be much shorter and wouldn't involve the lumbar vertebrae? It seems to me that these patients recover more quickly and have fewer limitations from the lack of flexibility. Maybe my daughter's case is such that he thinks revision surgery is very probable, her lumbar curve involves L5 but I don't think any doctor would want to fuse that low in an adolescent.

I guess the point is you have to look at every case individually and not apply what one doctor says to any other patient. What Dr. Lenke told us may be very specific to her but I do trust he has the experience to know what he's talking about. I appreciate what you're saying and it's good to know that there are many out there who are doing fine after so many years.

laurieg6

09-08-2007, 11:26 PM

Sherie,
What I remember about Alexander's lumbar spine x-rays is that his L3 & L4 do sort of tilt into each other. One surgeon said that because of that we should fuse to L4, two others said they'd see when they were operating whether they'd go to L3 or L4 & the one we chose said going to L4 was not necessary. I'm hoping/praying the latter was correct & that Alexander never needs another surgery.

Thanks for asking how Alexander is doing: His posture isn't great yet but otherwise he feels pretty good. He started school this week & realized his back didn't like the hard chairs so he's been bringing a pillow to school. He's not happy he can't run around with friends & feels left out of certain activities but otherwise enjoys school. Unfortunately, two of his closest friends are having outdoorsy, camping, skiing or sledding types of birthday celebrations this year & he'll probably not be able to go to those unless special accommodations are made for him. There are a lot of emotional repercussions associated with recovery from this surgery...

Sherie

09-09-2007, 01:39 PM

Laurie

I imagine that's hard for a 12 yr old boy, my son is 11 and I know he doesn't want to miss out on anything. I don't have anything to worry about in that respect, my daughter isn't into any sports.

It seems like a lot of kids have problems with posture, will that improve over time, has the doctor said? Didn't Patrick go to PT for that reason?

laurieg6

09-09-2007, 11:32 PM

Hi Sherie,
When I spoke with the nurses @ our Children's Hosp. about Alexander's posture, they said it was common & that the back muscles need to adjust to their new position. They said it would take at least 2-3 months. It's been almost 2 mos. now & though he is usually standing more upright, sometimes Alexander still leans his shoulders forward. He is also more able to even out his shoulders but usually the right one is somewhat higher than the left. It's all getting better so I think it will probably be okay & I'm trying not to worry (which is very hard for me sometimes - my life for the past 7-8 years has been worrying about Alexander's scoliosis & whether he'd need surgery, what treatments we should do, etc.) We are so happy the surgery is over with & he doesn't have to wear the brace (TLSO) anymore. I'm hoping that we get the okay to go to physical therapist at his next post-op appt. on Oct. 4th. I've already taken him to a D.O. for cranio-sacral therapy & a chiropractor who did gentle vibrational treatments on his upper back/neck/shoulders (to looses muscles) & used a laser to speed healing.

Take care,

clarexp

09-11-2007, 11:25 PM

Do you still want this info

I have looked at the Rahmouni website and seen the results, I also wondered how comfortable is a brace than can achieve that kind of correction. Bzebra is the German lady who had significant correction through the Schroth method as a teenager and has maintained it through her 30's by wearing a Rahmouni-made brace only at night. I'm not sure we have anything comparable in the States, but there is an orthotist who makes Cheneau braces, I don't know much about them, couldn't find a whole lot on the internet except for pictures. Our best chance is continuing with the Spinecor and getting adjustments as necessary, at least I know she'll wear it!

Sherie

09-12-2007, 12:51 PM

Thanks, but no, she's going for surgery this Nov., however it wouldn't hurt to post the information for anyone else who may be interested.

Take care

rtremb

09-26-2007, 02:19 PM

Our daughter is seeing a chiropractor three times a week, doing daily Pettibon wobble chair exercises, wearing a head weight, doing arm punches, being massaged on a traction table (3 x per week), using a bedroll before sleeping, doing balancing exercises, Hatha Yoga, and doing neck traction. Now the chiropractor is getting a new vibration table to use for her. I want to understand more about this before we agree to this treatment so I am wondering if anyone on this wonderful forum has had treatment with a vibration table with a chiropractor? I think the idea is to work on reducing the rotation.

I also noticed on the Spinecor website at this url:
http://www.scoliosissystems.com/wholebody.html
information about whole body vibration exercise. Wondering if anyone has had any experience with this?

Ruth

gerbo

10-01-2007, 12:26 PM

gosh, that is an awful lot of different and varied treatment. And I feel guilty sometimes about "all the things" we ask Lisanna to do. How is your daughter taking all that??

can i just add that what you refer to is not the spinecor website, but the site of a chiropracter who uses the spinecor brace and uses a lot of spinecormaterial to advertise this. I am just saying this as I doubt that the spinecor people really would want to give the impression that they are involved with or endorse all these alternative approaches as these chiropracters advocate.......

rtremb

10-01-2007, 08:07 PM

Gerbo:

Thanks for the heads up about the website being a chiro website - will ask Dr. Rivard about the whole body vibration exercises and what he thinks of them.

My daughter is happily doing all the exercises, yoga, etc. - she never, ever complains. She is very much against having the surgery and is determined to do all she can to help herself - when she makes her mind up about something she can be very, very determined - this can be both good and bad!! (She decided she would learn how to do the Rubik's Cube and mastered it in one month - she can do it in 28 seconds now and will be competing in the Speed Cubing competitions in near future). She has a very good understanding about the mechanics of scoliosis and how the exercises can potentially help her. She is very annoyed with the surgeons for not telling her about Spinecor when her curves were lower and wants to write to them about it asking them to start recommending it to children with lower curves.

She hates all medicines, needles, medical tests, etc. so going through a surgery this major with her would be an ordeal for everyone - to take a blood sample three people had to hold her down last time! Fortunately, she likes exercising. I really hope the exercises and bracing help to hold her curves - she does understand, sad though it is, that they may not.

gerbo

10-02-2007, 03:16 AM

(She decided she would learn how to do the Rubik's Cube and mastered it in one month - she can do it in 28 seconds now and will be competing in the Speed Cubing competitions in near future).

you mean to say there is a logic to it which you can learn?? Is it not pure luck then?/ That's what i always have been counting on. needless to say i never resolved the cube, three same colours in a row is the best i ever got, got nice patterns though.

good to hear she is so motivated. i am sure though that i do not need to tell you there is a point that you need to prepare her for the possibility that she might need surgery, and that really surgery isn't that bad!! There is a risk that surgery becomes synonimous with failure, which it isn't as so many here will happily confirm (melissa and nicole being the most recent people having taken that route and coming out smiling)

rtremb

10-02-2007, 11:51 AM

Gerbo:
The Rubik's Cube can be solved using assorted math algorithms which can be learned - I do believe you have to be able to think three dimensionally though.

gerbo

10-02-2007, 12:33 PM

i don't think that I ever got on particularly well with math algorithms. (whatever they are) ;) ;)

rtremb

10-05-2007, 11:09 AM

Sherie:

From your posts I read that your daughter did the intensive Pettibon treatment and she wore Spinecor. Yesterday we went to Peterborough, Ontario to see Dr. Horseman, DC about a new Pettibon approach to scoliosis management. He told us Pettibon have found that they can decrease the curve with the intensive treatment but are admitting it doesn't last. He says they need to work on muscle strength too to hold any correction achieved - this takes longer. He recommends two day visits for intensive treatment every couple of months. The treatments now include a TLSO customized brace for four hours a day, with a continuation of the Pettibon exercises, weights, traction, etc.

We would like Esme to wear Spinecor for the remaining hours of the day to keep constant pressure on the spine. I notice from your posts that the lumbar curve was your main concern - for us the thoracic is the structural curve...lumbar is compensatory. I am wondering if you think the approach outlined above is worth pursuing based on your own experience with the combination of Pettibon and Spinecor? I am wondering how regularly your daughter had chiro Pettibon treatments and what treatments she received from the chiropractor? Also how often she do the exercises?

Also - were Dr. Rivard and Dr. Coullard aware of the combination of Spinecor and chiro treatments and if so, were they okay with this? We thought we saw on their website that no other treatments should be received other than the Spinecor and their physiotherapy program.

It is really hard to decide what to do and any advice or experience you have with this would be most appreciated. Thanks.

Ruth Tremblay

Sherie

10-05-2007, 12:50 PM

Ruth

There was so much involved I think it might be easier if I discussed this with you on the phone. I also have manuals that were made for Sheena and I could fax the pages showing the treatments to you if you have access to a fax machine. Let me know if this would work for you and we can exchange phone #'s by PM.

MATJESNIC

10-05-2007, 01:17 PM

Ruth,

When you describe your daughter, you could very well be talking about my Nicole. She is the most motivated, dedicated child when it comes to school, dance, organization, etc. She wore her Spinecor with a vengence and her daily motto was "I will not have surgery." She also feared shots, talk of blood, etc.

Although she did everything right, she learned that so much in life is out of our control. Hence, the Serenity Prayer, which I told to her daily. She did everything right and needed surgery anyway. This beautiful child who used to cry as a baby because her hand got dirty or her shoe came off would surely not be able to handle surgery. But handle it she did. Sure, she drove the nurses crazy and they probably all quit the next day to become accountants or librarians.

But I have been watching her with her teachers sitting at the dining room table, calculating math problems, learning Spanish, doing science experiments, and I am in awe of her. Everything she went through and now going back to her life, worrying about catching up and getting good grades. The human body is amazing. How quickly these children begin to recover. It is truly a miracle.

gerbo

10-05-2007, 03:07 PM

you and nicole are an example and proof that there is hope regardless.............

Sherie

10-05-2007, 08:19 PM

Ruth:

I sent you a PM with my email, I could go into more detail about the program she was on because it was quite extensive. But in a nutshell, the Clear Institute protocal did include weighting, traction w/vibration and a whole series of exercises. The routine took 1.5 hours, 2x/day at home. We went to Minnesota to see Dr. Woggon for the one week of intensive therapy, we were basically there the whole day except for lunch. I did see some improvements on the before and after xrays, but quite obviously, that didn't hold. There was no one here in Houston doing this type of treatment at the time so we bought all the equipment necessary (it was very expensive too). We finally threw in the towel after 4 months, she had gotten worse in that time. I can't say she did the exercises 100% faithfully, but she gave it a fair shot. She was having to get up at 5:30 in the morning to get everything done and then repeat again in the evening, it was pretty hard. I had also considered the Schroth method but decided on Clear Institute because Schroth wants you to wear a hard brace in that program (obviously you don't have to though) and they pretty much say you will need to do exercises your whole life to maintain the scoliosis, but at least that's realistic.

I'm glad someone's finally admitting that the correction won't hold, that was always our concern. It's difficult to do all that therapy day after day and not know if the results are even going to hold for one hour once you quit. Did they have any long term results to share with you? Did they say this would be a lifelong commitment or do they believe permanent reduction can be achieved and what evidence can they show you to prove this? I think those would be the most important things you need to know before you invest a lot of time and money. I don't necessarily regret the decisions we made, but knowing what I do now, I would not have put her through that.

rtremb

10-06-2007, 12:39 AM

Thank you for the info. It is such a shame after all the effort and expense that your daughter's curves progressed anyway - you really tried hard to hold them back. I really hope everything goes smoothly with the surgery for your daughter. Your story is making me cautious and less optimistic as we proceed in deciding what is best for Esme. Your daughter's Pettibon routine sounds very similar to Esme's. Our chiropractor is so sincere it is hard to believe this won't work but your daughter is proof it probably doesn't......at least not for everyone...

Dr. Horseman has a long power point presentation which he uses to train other chiropractors. We will be getting a copy of it tomorrow from our chiropractor - hopefully this will show some real results from the "revised" Pettibon treatment. It includes an analysis of the various braces - he showed this part to us briefly when we were in Peterborough. Will post again once we have watched this.

Dr. Rivard did tell us the Spinecor had a 10-15% chance of working and really we don't have a lot of other options. I suppose Cheneau is an option but we'd have to know Esme will actually wear the brace before we fly off to Spain or something........!!

I have a lot of regret that we did not receive proper advice when Esme's curves were below 20 degrees (or realize we needed to research more). We did not know her curves could get this large. We were misled by her brother having neurofibromatosis into thinking only children with a medical condition have progressive curves and went on to have surgery. Also, I have a lumbar scoliosis, discovered when my Mum was hemming a skirt for me, which has never progressed past the mid-20's. In hindsight we were so wrong but we really had no idea what could be coming. There is a lot of guilt with this which on one level I doubt I will ever get over - how could I have been so stupid not to have googled just a bit.

I was dropping Esme off at a party last weekend and was chatting with the Mum about Esme's scoliosis. She casually mentioned that her nine year old daughter had a scoliosis. I asked if she was wearing a brace. The Mum said that the GP had said it was no big deal. I took a really deep breath then told her some of our story, advised her to ask for a referral to an orthopaedic surgeon right away and look at the Spinecor brace website. While I am no medical expert - I just couldn't keep quiet!! If only I had had someone to warn me it might have made a big difference.

My daughter intends to write to the Mayor of Ottawa and the politicians to ask why there is no scoliosis screening in the schools here in Ottawa. I do a lot of community work and know the Mayor/local/provincial politicians so I can probably get her in to see them if she wishes too. I have already written to the provincial Minister of Health Promotion about the Spinecor being covered by the Ontario Health Insurance Plan (which it isn't right now - only TLSO) - a lot less expensive than surgery for the health system. So maybe we can become advocates for better information & treatment options for future scoliotics and some good will come of this...for now anyway it may be a good distraction and one way for Esme and I to feel better about this - trying to help others.

rtremb

10-06-2007, 12:59 AM

Melissa:

Thanks for your post. It is comforting to know that the children who have to have surgery get through it and recover relatively quickly. You must be so relieved to see Nicole resuming her usual activities like school work and shifting her focus back onto "good grades" again. I have followed your story closely, anxiously reading your posts to learn of Nicole's progress.

While I can't admit to myself yet that Esme needs surgery, and I know if her curves get near 60 we are at the end of the road for alternatives, but in the meantime we feel we have to try something. I still can't quite wrap my head around even the thought of the surgery for her and often feel desperately upset even angry this is happening to her. After reading so many posts on this forum I sometimes think we are still in the "desperate to fix it" phase and feel kind of silly. I wonder if there is anyone out there who actually succeeded in holding back the curves that are around 50 degrees!!

Sherie

10-06-2007, 01:28 PM

Ruth,
I can totally relate to your experience. We discovered Sheena's scoliosis when it was 25L, we were told to watch and wait. I also never expected this to progress because I knew my sister and dad both had scoliosis but were living a perfectly normal life. Come to find out, their's is mild, it appears they have more of a problem with leg length difference which probably caused the scoli. By the time we went back at 6 month, she had progressed to 35 and we put her in a hard brace. That was a miserable experience, that's when I started looking for alternatives. We then tried the Spinecor but she was at 42L at that point. By the way, we never saw the doctor's in Montreal, I only spoke to Dr. Couillard on the phone and she told me a lumbar curve >40 is very stiff and may not respond well to bracing. I had to make a decision what was the best thing we could do at that point. For me, it was between Clear Institute, Schroth or going to Montreal and seeing if they could do anything else with the brace. I finally decided on Clear after I spoke to several people who had positive experiences with that. One guy said he completely reduced his curve, but it was <20. Anyways, you can see for us this was a very frustrating experience. It's especially difficult when you're so hopeful and then it doesn't work out.

When her curve reached 60, that's when I gave in to the idea of surgery. I too was very much against it right from the start therefore made it much more difficult to accept for me and Sheena. It's probably in Esme's best interest to at least let her know this will be a possibility. We know this is the best thing we can do at this point but it still weighs very heavy on my mind. When she has surgery and I see she'll be ok, then I'll be able to breath.

My experience with chiropractors is that they are very enthusiastic about what they do and convey a feeling of genuine interest, which may be true but be careful about their claims. The only chiro. who I felt was 100% honest with us was not one who regularly dealt with scoliosis but he had the Pneumex equipment and agreed to try. He said we should know within a month wether it was working , it didn't (he was very disappointed by the way).

I think you have to do whatever feels right to you and is a decision you can live with, that's why I tried all these treatments despite the lack of evidence that it could help. You never know if it will work for your daughter unless you try. Take care,

Rosemarie

05-11-2009, 02:20 PM

You wrote that you would be interested to hear from anyone who's been treated by Dr. Dennis Woggon...Well, here I am! Woggon is a highly skillful, extremely intelligent, excellent chiropractor who has dedicated his chiropractic practice to chiropractic leadership, education, advancement and research. I completed two weeks of intensive treatments with Dr. Woggon, Dr. Chong, and staff at the St. Cloud Chiropractic and Scoliosis Center in St. Cloud, Minnesota (March 30-April 10, 2009). I am now continuing Woggon's scoliosis treatments at home with exercises and his scoliosis traction chair twice daily...as well as chiropractic adjustments at my local chiropractor's clinic in Savannah, Georgia, (Dr. Mark Domanski and Dr. Michelle Fekete).
Unfortunately, the pictures of the pre- and post- x-rays can't be attached here. However, I have attached an abridged summary report of my two weeks of intensive treatments for my severely deformed scoliosis spine. If you would like the full report, let me know. I will send to you a copy. Here is a portion of my report following the two intensive treatment weeks at Dr. Dennis Woggon's St. Cloud, MN, clinic along with my concluding comments:

Pre- Post Treatment Findings

After two weeks of intensive treatment at the St. Cloud Chiropractic and Scoliosis Center, on April 10, 2009, Rosemarie’s final x-rays and comprehensive assessments revealed the following:

1) lateral cervical stress x-ray with 2# headweights and limited vision horizon glasses reveal a lordotic curve with 65% loss of curve indicating 11 pounds of apparent head weight with 0.1 inches of forward head posture, dysfunction of cervical vertebra C2,3,4 and 5.
2) right cervicodorsal COB angle from T3 to T6 3 degrees;
3) left thoracic COB angle from T7 to T10 27 degrees;
4) right lumbodorsal COB angle T11 to L3 48 degrees.

Rosemarie’s thoracic “hump” is visibly decreased; her pain is substantially lessened; and her optimism for a healthy remainder of her life is greatly increased. She will go back to work soon!

Rosemarie's note...

Fifty-five years after my scoliosis was diagnosed (at age 10), I left the St. Cloud Chiropractic and Scoliosis Center in St. Cloud, Minnesota with renewed strength and courage to continue my battle against the crippling effects of “idiopathic adolescent scoliosis,” having finally found help for my debilitating disorder/syndrome. No longer a candidate for surgery, I realize that the cost of Woggon's treatment is incidental compared to the benefit of a straighter, stronger, healthier spine for the remainder of my life (I am now 65 years old). I cannot sing the praises loud enough for Dr. Woggon, Dr. SuYen Chong, and the other St. Cloud Chiropractic Scoliosis Center staff—Margie, Ashley, Emily, Rachel, Dr. Mark Brenner. Let the dance begin! My back is soon to be (with diligent exercises, patience, and care)…..a normally curved spine. Who could have imagined such a miracle!...........Dr. Dennis Woggon, that’s who!

If anyone reading this post would like more information about my experiences during the two week intensive scoliosis treatments at Woggon's Chiropractic and Scoliosis Center in St. Cloud, MN, let me know, and I will be happy to share.

Here's to healthy, normally curved spines!

Rosemarie
rosemarie_stallworth@hotmail.com

I'm still a bit skeptical on Dr. Woggon's claims. Success in treating scoliosis via this method depends first and foremost on the "flexibility" of the curve. A curve that is very rigid and fixed (i.e., does not improve in the supine position versus AP or PA) is unlikely to respond to physical therapy OR chiropractic. Secondly, any improvement will require some type of maintenance. This goes for both physical therapy AND chiropractic manipulation. If you're familiar with the "vicious cycle" theory, this means that both of these techniques do help correct the "asymmetrical loading", but until the root cause is addressed or the asymmetrical loading totally reversed, the curvature will probably restart the cycle.

I'd be interested to hear from anyone who's been treated by Dr. Woggon and if they have been able to maintain any correction.

Writer

05-16-2009, 01:06 AM

I am curious what kind of exercises you have been prescribed. What is their goal, specifically?

While I am happy to hear that you've achieved some improvement with conservative means, I would like to fully understand the means. Woggon writes in one of his little papers that he conceives of scoliosis, and its treatment, as beginning in the cervical region.

The Schroth hypothesis, and treatment, are the opposite. The pelvis is misaligned, due often to problems in feet and legs. If all these are not addressed, the treatment is unlikely to be very effective for long since the pelvis is the foundation to which the spine is indirectly attached.

I don't know that these two concepts are reconcilable, but am willing to listen to solid explanations, and of course to see appropriate evidence.

Rosemarie

05-31-2009, 05:55 PM

You wrote....
QUESTION: I am curious what kind of exercises you have been prescribed. What is their goal, specifically? ANSWER: The exercises are based on each patient's x-rays and are specific for each individual. No two scoliosis spines are the same. The exercises are also ISOMETRIC rather than ISOTONIC. (Core muscles respond to isometric exercises.)
QUESTION: While I am happy to hear that you've achieved some improvement with conservative means, I would like to fully understand the means. Woggon writes in one of his little papers that he conceives of scoliosis, and its treatment, as beginning in the cervical region.
The major "righting reflex" to gravity is located in the head and neck.
The Schroth hypothesis, and treatment, are the opposite. The pelvis is misaligned, due often to problems in feet and legs. If all these are not addressed, the treatment is unlikely to be very effective for long since the pelvis is the foundation to which the spine is indirectly attached.
ANSWER: The pelvis is addressed with exercises, adjustments, blocking, and a sacral belt. The pelvis is not the foundation. If it were, we couldn't walk on uneven ground.
Appropriate evidence is available at the CLEAR CLINICS throughout the US. I hope this has been helpful.

txmarinemom

05-31-2009, 11:43 PM

Appropriate evidence is available at the CLEAR CLINICS throughout the US. I hope this has been helpful.

Writer, you've met your match, I believe ... ;-)

Bigbluefrog

10-12-2009, 02:17 PM

Professor,

I One morning I came in and I said that my back hurt after I slept on my stomach. He told me not to sleep on my stomach. That seemed to help also. All I can say is that to date, my pain has improved, and my latest x-rays have improved. The improvement is noticeable when looking at the before and after x-rays. I don’t know if it will last, but I’m hopeful. It probably doesn’t work for everyone since we are all different. My chiropractor said to hope for continued gradual improvement of a few degrees over the next few months and that such an improvement is a little unusual for 6 weeks.
So you found a chiro with clearwater techniques in your area?

My daughter loves to sleep on her stomach...after her dx of scoloisis I rec laying on her back...and for first 30 minutes she has to lay on a rolled towel to correct her neck position...then she has a pillow under her knees....A PT rec right side sleeping too...I have no idea why...seems to help her back and pain level.

Bigbluefrog

10-12-2009, 02:28 PM

You wrote....
QUESTION: The exercises are also ISOMETRIC rather than ISOTONIC. (Core muscles respond to isometric exercises.)
What is isometic exercise...can you give an example? Vs isotonic? please explain

Woggon writes in one of his little papers that he conceives of scoliosis, and its treatment, as beginning in the cervical region.
The major "righting reflex" to gravity is located in the head and neck.
The Schroth hypothesis, and treatment, are the opposite. The pelvis is misaligned, due often to problems in feet and legs. If all these are not addressed, the treatment is unlikely to be very effective for long since the pelvis is the foundation to which the spine is indirectly attached.
ANSWER: The pelvis is addressed with exercises, adjustments, blocking, and a sacral belt. The pelvis is not the foundation. If it were, we couldn't walk on uneven ground.
Appropriate evidence is available at the CLEAR CLINICS throughout the US. I hope this has been helpful.

So what does it all mean? I am still very new to all this...is it the neck or the pelvis...because in dd situation we can see both out of alignment.

When I think of the spine..it is a very dynamic organ...it moves, twists, bends, with the person. I believe the muscles and posture do have impact on the spine. Although...just a thought what is scoliosis...is the spine fixed? Due to tight muscles, or bone deformity, uneven growth, or we really don't know what causes it

When I give my dd a back massage, I can feel tight areas and areas of weakness..this is something tangible and concrete because I can feel it myself.
Is it correctable in early stages with exercise? correcting imbalances of muscles and posture? Or is it what it is...and some improve others don't and its just a selected your scoliosis may vary kinda deal YSMV

Rosemarie

10-12-2009, 04:29 PM

Hello BigBlueFrog,

Based on understanding about the spine that I have learned (having cared for my scoliosis for 55 years), I will try to answer your questions.

You asked...is it the neck or the pelvis...because in dd situation we can see both out of alignment.

Answer: There are three normal curves in the spine. When the cervical curve (neck area curve) is not normally curved so as to balance the head on the spine, the other two spinal curves are "knocked" out of alignment. This usually throws out the alignment of the pelvis, as well.

You asked about the differences between use of isometric and isotonic exercises...

Isometric Exercises -- Def. A system of exercises using muscular contractions [I][I]against resistance in which the length of the muscles remains the same. Isometric exercises are used to strengthen and tone muscles, including the core muscles in the body. Example: Place hands together in front of your chest and push against each hand. Feel the force of the contraction as it strengthens the muscles in your arms, shoulders, and chest.

Isotonic Exercises --Def. A system of exercises using muscular contractions in which the muscle stays under relatively constant tension while changing length. Example: Lie on floor face down. Place palms on floor beside your body. Push your body up by raising your arms. (commonly referred to as "push-ups")

You asked...

what is scoliosis...is the spine fixed? Due to tight muscles, or bone deformity, uneven growth, or we really don't know what causes it

Answer:

Scoliosis: Def. Abnormal curvature of the spine.

The spine is not fixed. If it were, we wouldn't lose height as we grow older, or we wouldn't hump over as we age, or the spine could not be knocked out of alignment (as in a car accident or sports injury)...and then repaired with proper alignment. Muscle strength, bone deformity, uneven growth all do effect the health and alignment of the spine. Scoliosis seems directly related to the health and alignment of the newborn spine.

You asked...

Is it correctable in early stages with exercise? correcting imbalances of muscles and posture? Or is it what it is...and some improve others don't and its just a selected your scoliosis may vary kinda deal

Answer:

Scoliosis is correctable in early and late stages; however, amount of correction, obviously, depends on the severity of the scoliosis and the age at which corrective procedures and exercises are begun. Skillful massage therapists can work wonders with the health of the muscles surrounding the spine...to relax those contracting, painful muscles. All scoliosis sufferers can benefit from a regimen of systematic isometric exercises, specific chiropractic adjustments and traction therapies, regular massages by a trained massage therapist...and a lifestyle that includes all of the other things that promote good health--not overlooking the importance of belief that the spine will strengthen, heal, and straighten as such a lifestyle is practiced.

I hope I've been helpful to you. Keep looking for answers, Bigbluefrog...You will find them. But if you have scoliosis, find a CLEAR CLINIC near you and get started getting well.

Best to you and good health,
Rosemarie

Pooka1

10-12-2009, 05:06 PM

Appropriate evidence is available at the CLEAR CLINICS throughout the US. I hope this has been helpful.

Writer, you've met your match, I believe ... ;-)

I assume txmarinemom won the post of the month competition at that time for this post. If not it certainly should have. :eek:

It's interesting what constitutes "evidence" for some folks.

LindaRacine

10-12-2009, 08:46 PM

Scoliosis is correctable in early and late stages; however, amount of correction, obviously, depends on the severity of the scoliosis and the age at which corrective procedures and exercises are begun. Skillful massage therapists can work wonders with the health of the muscles surrounding the spine...to relax those contracting, painful muscles. All scoliosis sufferers can benefit from a regimen of systematic isometric exercises, specific chiropractic adjustments and traction therapies, regular massages by a trained massage therapist...and a lifestyle that includes all of the other things that promote good health--not overlooking the importance of belief that the spine will strengthen, heal, and straighten as such a lifestyle is practiced.

Rosemarie...

When you have published proof of this, please post it. Until then, I'll request that you limit your posts to only your own experience.

--Linda

Lorraine 1966

10-17-2009, 02:09 AM

Thankyou Linda, totally agree. Just wondering Rosemarie if you were worried about your age when you stated that you could not be operated on. There have been a number of people on this forum who have been operated on successfully and have been older than you, just wanted to let you know,.

Lorraine

Bish

11-02-2009, 11:34 AM

I am not even asking for a STUDY to suggest evidence that this program has success. All of these hundreds of success stories makes me wonder, is there not at least one single patient who went through the program and had there curve reduction VERIFIED by an outside source? Not a chiro or clear institute staff member but a certified radiologist, say that works at a major hospital. My bet is that there is not one single patient who went through the program that can have this verified. If this is the case, doesn't this concern anyone?
Thats my thoughts. Bish

hope404

11-02-2009, 11:28 PM

LindaRacine

11-02-2009, 11:50 PM

unfortunately...

when people are helped and happy they aren't usually posting on scoliosis chat sites that are mainly designed to encourage and help. They do not need encouragement or help...

the only ones who would likely post would be the failed cases ....

Hope..

Well, I think that's somewhat true, but we've never found a single person who has had verified long term reduction of their structural scoliosis curves. One would think that one would have come forward by now, or there would have been a published account.

--Linda

hope404

11-03-2009, 02:01 AM

Pooka1

11-03-2009, 05:46 AM

I personally know of several CLEAR clients with substantial curve reductions but could you call them "long term" .....

NO, since, most started therapy within the last year or two ..... their results will not be considered "long term" for several years yet.

That is why I keep saying let's " wait and see" since that is all that can be done when the majority of their cases are so new and recent.

What about the kids who started several years ago? Have their curves been reduced permanently?

If that were the case Clear would have documented it.

How long has Clear been around?

joannemadden

12-06-2009, 10:46 PM

joyfull

12-06-2009, 11:25 PM

I spent two weeks at clear in 2007. I was 55 then. My thoracic curve was about 80 degrees. The program was intense and Dr. Woggon's adjustments are painful. I was given exercises that I needed to do twice a day, which took over half an hour.

After two weeks of machines, adjustments, Ekhart table therapy with 20 pound weights on the rib hump, my scoliosis measured 63 degrees, according to Dr. Woggon's measurements. Dr. Woggon declared it almost miraculous.

Dr. Woggon pays lots of attention to restoring the natural curves in the neck and lower back, and NO attention to the torso muscles. I was told to sleep on my back with a roll under my head and one under my lower back. When I expressed concern that the torso muscles were "giving way," I was told not to worry about it.

It is hard for me to write these things, since I believe that some people have been helped there and I believe that Dr. Woggons is sincere, but I felt that the treatment made my back worse and hastened the progression. I have been told my several people that my scoliosis is more noticeable now. My torso has rotated more and the hump is more out to the right side. I feel as though my torso muscles have "given up" and that my spine is collapsing. The latest measurement of my thoracic curve by Dr. Lonner on Monday was 85 degrees.

I have been told that Clear has modified its exercise program. I purchased the vibrating chair for $3,000 which I was supposed to be using twice a day. It was a huge commitment of time and money and I began to have doubts about its efficacy for my degree of curvature. Plus, continuing with a local Clear trained chiropractor was quite expensive, with no end in sight. In fact, the new chiropractor wanted me to start all over with him and commit to a plan of treatment for something like $5,000.

I am now excited about starting Pilates which I believe would have benefited me more than Clear, since it strengthens the torso.

I can't help feeling somehow that it must have been me, but I know that I was committed to the program, and that I had doubts about the method as I was undergoing it.

The entire experience at Clear, treatment, airfare, renting a car and hotel cost me $10,000.

I am planning on having surgery in June and feel very good about the decision. I have been avoiding surgery all my life because I had no pain, but now I can feel rapid changes and my breathing is 50% of what it should be.

This forum has been a Godsend. Thank you all for you generosity in sharing your experiences. All the best, Joy