spinecor

[gerbo]

In my daughter's case an EMG shows that the muscles in the curve areas are overactive on one side and underactive on the other -

interesting, can you remember which was the "overactive" side??

[LATigner]

reply to Gerbo

I'll have to get a copy of the test results as I dont' remember. I'm taking my daughter today so I'll see what I can do and let you know. I just remember it's very consistent with both curves.

[LindaRacine]

We are not part of a study that I know about. How it helps our daughter's treatment is that she is then given exercises to correct the inbalances.

Has this chiropractor found scoliosis patients who don't have these "imbalances?" And, if so, do they not get the exercises?

--Linda

[LATigner]

To Linda

I do not know about all of his patients - I'm sure some choose not to get tested. He is treating a couple of older patients that go to my daughter's same chiropractor. One is 20 and the other 34 and I think they elected not to have the testing done. I asked why and I think they said that since the scoliosis is more established as you get older and curves become structural it is not as effective. I wasn't there in person to hear Dr. Ron's explanation but I do know that he did not pressure them.

They are very interesting tests to watch. The patient wears special goggles that record how your eyes move. They are connected to a computer which records the data. He had my daughter sit and lie in certain positions and move her head and eyes - sometimes together and sometimes separately and the program records the movement. In my daughter's case, when she turns her head and looks to the right, her eye movement is delayed and does not follow the direction she turns quickly enough. She was given a set of 3 eye exercises to do for 3-4 weeks and then there will be a second set.

Also, he said he has some scoliosis patients that have an inner ear inbalance and get dizzy very easily. My daughter does not have any problems like that. They are not sure what role (if any) the occular vestibular inbalance plays in the development of scoliosis or if it is a side effect of having the disease rather than a contributor. Dr. Ron was very upfront about this - he did not try and get us to believe this was some magic cure. If you want a more detailed and scientific explanation, I'm sure he would be happy to speak with you on the phone.

[Celia]

Celia,

Tell me about Deirde. Were you doing serial casting with her? Why was she switched to the Spinecor? Wow! 1* in brace----that's awesome! I'm always curious....my daughter and I run a Scoli. support group and I'm always trying to stay up on the latest treatment.

Mary Lou,

Yes, we did serial casting for quite a long time - her curve was severe, 60 degrees ! Actually serial casting for progressive infantile scoliosis has been around for quite a long time, I guess it just fell by the way side by some medical professionals in favour of "better" newer methods to control the curve. If you're interested in reading articles about serial casting, I've provided a link to articles that I've uploaded to a different group, included is a butchered French translantion by me of a Cotrel/Morel article which was published in 1964 discussing EDF serial casting.

The reason I chose the Spinecor brace over rigid bracing was because it just made sense to me at the time. I didn't want Deirdre's muscles to further atrophy and I wanted her rib cage and hence her lungs to continue to grow and expand.

http://www.scoliosis-support.org/mod...wcat.php?cid=4

[BlueCrystalMan]

The xray concern shouldn't be any concern at all... THESE DAYS the exposure to the radiation is minimal. It was a concern of mine, and my cousin is an xray technician and I discussed it with him and he said not to worry.

As for the extra testing... the data collected is going toward research, as there is a possible correlation between the ocular vestibular imbalance and scoliosis... the way I understood it is that the mind thinks the patient is out of balance and the brain uses the back muscles to balance a person. Over time, the muscles on one side or the other, depending on the perception of which way the body thinks its falling, get built up and in turn pull the spine that way. The testing determines which side is the more dominant side, and based on the data, eye exercises are prescribed to 'retrain' the brain to eliminate the imbalance. The testing goes toward prescribe specific exercises for the specific curves in his spine.

The exercises prescribed, both for the eyes and the physical part go toward helping to eliminate the curve and its causes. Software is provided to help retrain the brain for a minute every day, and he has to do a spinning exercise in his desk chair while focusing on his thumb in the distance. All this goes toward helping the brain adjust to the fact that my son isn't really off balance.

So personally, the tests made sense, and the data compiled for the greater good of current and future patients, and no I don't think I was scammed at all. Research dictates that they are on the right track, and so far my son's progression in terms of doing his exercises has been tremendous... I can see difference in his balance already both on the exercise ball and when doing his eye exercises.

[cherylplinder]

position of brace

Hello all!!

I am a bit confused about the positioning of the bolero on Rachel's brace.

It seem to make a difference how far forward or backward I position the bolero when I put Rachel's brace on, and I am unsure where to postion it. In other words, the bottom back hem can be up or down a couple of inches. I never noticed before yesterday.

Also, even though I center the back seam between attaching each strap, it always goes a bit askew(i.e. a few centimeters to the right) after wearing a while. Do any of you experience this also? Is it normal or of concern?

Thanks so much!

Cheryl

[LATigner]

Thank you Blue Crystal Man for the great explanation - I was having trouble explaining the inbalance and occular vestibular connection in my post. I know my daughter's muscles are pulling unevenly because the EMG clearly shows it. In addition to the eye exercises, etc. her doctor also has her doing some head weighting. Another thing they have found is that people with scoliosis have a forward head position. Instead of being square over their body, their neck and head go forward. Also, many have lost the normal curve in their neck. It will be great when someone is able to put all of these little clues together and really find a cure.

[Celia]

Cheryl,

I'm still anxiously waiting for the 2nd part of your story....... No time huh ? As for the positioning of the bolero, I've never encountered that.

[cherylplinder]

Cheryl,

I'm still anxiously waiting for the 2nd part of your story....... No time huh ? As for the positioning of the bolero, I've never encountered that.

Celia,

I edited my post later that day to finish it.

I suspected because I wrote a dissertation and finished a page some might miss it. ( See end of page 20 this thread.)

I would be interested to know if you all came to the same conclusions I did or found any other evidence that influenced your decisions, as I am still very anxious.

I have the utmost confidence in Drs. Rivard and Coillard, though. I felt they wouldn't do anything but the best thing for Rachel.

Thanks for caring!!!!!!!

Cheryl

[BlueCrystalMan]

Cheryl... sounds like one or more of the straps may not be 'tight' enough. It is my understanding that there should be SOME movement, although VERY slight. When I had a question about my son's brace (I accidentally tightened the laces), the doctor told me to take a couple of digital pictures and email them to them and within five minutes he called me back and told me all was fine. Maybe you could try that once it goes askew and they can explain it to you either over the phone in email?

As for your anxiety... I'm not sure I found the question you're referring to... can you restate it so I can post my experiences? I have researched a TON on the subject and continue to do so...

[cherylplinder]

[QUOTE=BlueCrystalMan]Cheryl... sounds like one or more of the straps may not be 'tight' enough.

Blue Crystal,

I wondered that. I had thought about e-mail pictures. (Think it sounds reasonable) I called and left a message, but they have not called back yet. I didn't realize her bolero was going askew until the other day. I kept watching to see if I was applying differently, or something.( Will call again on Monday, since I did not receive a call today. )

As for your anxiety... I'm not sure I found the question you're referring to... can you restate it so I can post my experiences? I have researched a TON on the subject and continue to do so...[QUOTE]

I appreciate anyone's input on the subject. Don't want to be a bother, but I can use any resources you have.

Rachel's curve has progressed 20 degrees since last January (2005). (Jan '05 - 19 degrees, July'05 - 24 degrees, December '05 - 33 degrees, January '06 - 38 degrees )(Hence my anxiety at any decision) I have endeavored to make an informed decision, but only started research mid December. Til then, I had no clue.(i.e. had done no research and relied entirely on my MD) Rachel's curve had not changed in the 2 years since her diagnoses. My older daughter's curve never changed(~14 degrees), but she was diagnosed at 13y/o, now 16y/o. I had not done ANY research to know that a 5 degree change to 24 degrees was definite critieria for bracing, (esp. since she is only 10 and has much growing to do.)

Now I really am alarmed that our ortho chose not to brace at 24. Don't feel secure. He didn't follow guidelines, as far as I can tell. Guidelines I found said (1) brace if 20 to 25, if child has progressed 5 degrees in 6 months (2) Curve is 20 to 25 degrees and child is premenstrual. She met both criteria. The only criteria he gave me was curve 25 degrees or above.
I think that he was considering her rough summer. But, fully informed, I would have chosen to brace.

Same U.S. doctor on January 19th, 5 days before appointment with Dr. Rivard, told me the next step may be a Milwaukee brace, when Boston had no affect on curve. He had never heard of the Spinecor. I told him of appointment with Dr. Rivard. ( I had pursued that becuase Rachel's BMI is above average, and Boston biomechanics are not as good for higher BMI) He was interested in results, but obviously had no opinion.

I don't know whether to pursue Milwaulkee and have ready if Spinecor shows curve progression, or leave be until next appointment. Also, some data I have seen this week gives a limit of 35 degree curve. I am confused. Are we pushing the limits of Spinecor tx? Do studies show something else more effective at this juncture? (I though I was dealing with a 33 degree curve in
December.)

There are a lot of other things going on in life at the same time as this, and my brain gets tired!

I just stumbled across gerbo's info on Weiss study. That scared me. Wish I knew Dr. Rivard's opinion of why that didn't work.

All that to say, insurance is not going to pay for Canadian tx. Boston brace had no effect on curve. (Even after modifying pads) Dr. Rivard and Coillard were going to recheck in April, (instead of 1 month,2 months).Not sure of US MD. Not sure WHERE to turn, if this doesn't work. Running out of degrees.
Past couple of days, not sure if bolero is sitting right!

I think that's the whole load! Sorry so rambly!
I have many anxieties, don't I?!
I sound a mess, don't I? I am. Good Grief!
(I have found that God blesses us in EVERY setback. Understandably, though, I am ready for no setbacks. )
Don't want to sound ungrateful! I am aware things could be much worse!

Thanks so much for your input!

[Celia]

Cheryl,

One or two of the straps may in fact be a little loose. During the first 5 weeks I did tighten the two shoulder velcro straps just a bit (the straps that actually push against the curve) and when we went for our followup appointment, Dr. Coillard tightened the same two straps even further.

Who is your ortho in the States ? He's probably not a scoliosis specialist or a member of the SRS if he hasn't even heard of the Spinecor brace. Regarding the Milwaukee in the event of progression......GREAT IDEA !!! In Deirdre's case, if there was progression I was going to have her wear the Milwaukee during sleep and the Spinecor during the day. The Spinecor is doing such a great job for us, it's not even an option at this point. Is your next appointment with Dr. Rivard in April ? For all it's worth, in my opinion Dr. Rivard is one of the orthopaedic super greats ( I think he's right up there with Cotrel and Mehta ) in the non operative treatment of idiopathic scoliosis in the world ! As for Weiss.....who knows Maybe he wasn't properly trained to apply the brace or maybe the Schroth exercises were a contra indication to the brace

Cheryl, I've had a few melt downs myself but the sun always shines the next day. and it shines for all of us.




celia

[pat]

I just stumbled across gerbo's info on Weiss study. That scared me. Wish I knew Dr. Rivard's opinion of why that didn't work.

My understanding is that Weiss had absolutely no training/didn't follow protocol, had the brace, but that was it! p

[cherylplinder]

Thanks for the pep talk, y'all!

The sun is shining again today!!!!!!!!!!

Every day some of the things you have said lift me up.

Melissa, that we as parents are doing the very best we know for our children. Gerbo, that we know of many successful, happy surgery stories. Pat, you've already traveled surgery successfully with one child and are bracing with another. Celia, Deidre's success is heartwarming! And Dr. Rivard IS amazing, and sooooo caring and warm.

Somedays, it's just the moles and the weather!

You are an amazing group of parents, and I'm grateful for your support!