spinecor [Archive] - Page 6 - National Scoliosis Foundation Forums

structural75

12-14-2006, 12:43 PM

Gerbo,

I'll try to clarify in short.

Osteopathy goes well beyond just trying to create flexibility in the spine, in fact I wouldn't say that its intent is to even do that. It is to restore motion/mobility when joints become fixated. But moreso than that, it seeks to identify and address the 'obstacles' that may be laying in the way of the bodies ability to grow/function properly, whether those obst. be joint fixations, soft tissue fibrosity/scarring, visceral restrictions, etc. (of course only when those 'obstacles are capable of being addressed manually. ie - boney abnormalities/fusions/etc obviously impose limitations in that regard.) Possiblities are infinite as to what these obstacles may be.... could be muscoloskeletal, visceral restrictions/malformation during embryological development, cranial, vascular or neurologic...?

I've had a number of treatments by a number of different Osteopaths... NONE of them ever used a high velocity thrust of any kind (but they certainly could have). If they manipulated a joint, it was 'unwound' using the receptivity of the tissue surrounding it... far more effective and lasting. This is one way they can go about effectively "stretching" the spine with intelligence and precision, and no force. However it takes far more skill to do it that way than it does to 'crack' or thrust bones(no offense to anyone out there, but anybody can be taught to perform those blunt techniques without possessing much skill at all.)

As for chiro... it is predominately, if not soley, 'adjusting' joints to alleviate supposed nerve impingent. There may be various other techniques/methods used by each - nutrition, kinesiology, neuroemotional technique... ut I'll refrain from commenting on those aspects. The premise is certainly questionable, as only about 20% - 25% of chronic or acute pain comes from nerve impingments at the spine.

My best advice would be to read up on them seperately from reliable sources and formulate your own opinions based on that. Or better yet, experience it first-hand (Osteopathy).

Gerbo, You live in Europe, There are some of the best DOs in the world in your neck of the woods. Dr. Jean-Pierre Barral, Dr. Jean Mercier, Dr, Didier Pratt, Peter Schwind, PhD, Christoph Sommer... Or look for the Munich Group in Germany, you could speak to them yourselves to find out more firsthand, They would be one of my first choices anywhere in the world, non-surgically speaking, as an adjunct or first try.

regards,
structural

structural75

12-14-2006, 12:47 PM

Melissa - sorry for the confusion... I meant to direct that towards Celia.

structural

christine2

12-14-2006, 12:51 PM

Excellent news Melissa!!

The doctors in Montreal are excellent because of you we did go straight to them and I am forever greatful.

We saw a scoliosis specialist here in Ct last week. He was very good but does not know anything about the spinecor brace. He said to keep doing what I was doing that the rigid braces were to emotionally tramatic for kids especially when they are very young and have to be braced for a very long time. I appreciated him not trying to persuade me to change braces.

Any how he wants us to have an MRI which means sedation for the 1 hour procedure. I not comfortable with sedation of any kind. I spoke to Dr. Rivard he said he only does MRI s with left curves.

We decided to wait till March when we go back to Montrel to decide if we will have the procedure.

Happy Holidays everyone I can not believe there is only 11 days till Christmas!!

Christine

christine2

12-14-2006, 01:01 PM

Sarah

How old is Madeline again.

Excellent news about your trip to Montreal. It took my daughter just a day or to to be completly comfortable in brace. About a month ago she had a small spot from the thigh band that was bothering her so I used a panty liner (the kind with the wings) and stuck it to the band. It worked great!!

Christine

gerbo

12-14-2006, 01:02 PM

1) any UK based DO's you know about?

I have said this before; regardless of the underlying cause, I am working on the principle that the scoliosis is partially maintained by adjustment of the ligaments round the spine, specially shortening/ contraction on the concave side (the lengthening on the convex side should be less of an issue), creating a situation similar to a contracture in any joint, which hasn't been allowed its natural range of movements for a long time. A physio would deal with a contracture by gentle/ regular stretching and I always wondered (as you know) whether a similar approach would help (a bit) in scoliosis. The chiropractic approach, with its sudden movements doesn't make sense to me, this is why I was wondering whether osteopaths would do things differently

re vestibular testing; i made the more derisory comment about that, not celia, my main objection being that I had the impression that lots and lots of money was being charged for this to be done....... (and than we could get into a long discussion about evidence based interventions etc etc, but we've done that before :eek: :eek: )

MATJESNIC

12-14-2006, 01:08 PM

Christine,

I'm so happy I could help you. I'm really glad things are going well for all of you in Montreal. Nicole gets marks sometimes too. When do you go back?

Melissa

mpj

12-14-2006, 01:22 PM

Christine,

Madeline is 8 years old. :)

Melissa,

We were in Montreal on Dec. 11. I thought you had an appointment near the time we were going to be there.

Sarah

structural75

12-14-2006, 01:34 PM

Celia,

There are documented cases of formerly parapalegic/quadrapalegic individuals who learned to WALK again (despite the prognosis from their doctors) due, in part, to methods and excersices designed to correct vestibular dysfunctions, usually under the guidance of Physical Therapists and neurologists. (In fact, learning to walk again REQUIRES vestibular re-programming, otherwise it is literally impossible) Obviously paralysis is another topic altogether, but clearly demonstrates the importance of vestibular functions. Various methods/exercises are employed in PT/Physio all the time to correct vestibular imbalances.

Gerbo,

Thanks for the clarification, i completely understand your point. hope there was no offense taken... i just believe there is a lot to be learned in this realm. Much is poorly understood and overlooked.

As for chiro hvla adjustments, your right.. won't accomplish much in regards to what you're talking about. More on the DO in the UK and stretching thoughts later.

structural

GeorgiaMom

12-14-2006, 02:03 PM

Hi all,
My daughter, Alayna (age 10 1/2) just received her Spinecor brace on Wednesday. We are seeing Dr. Brian Ouellette, a Chiropractor in the Atlanta, GA area. His office is only 10 miles from our house, which is great!

We first learned Alayna had Scoliosis in April as a result of her annual exam. Her initial x-ray at the ortho showed 6 degrees and we were told to come back in 6 months, which we did in November. At that time he measured her at 34 degrees and scheduled her to be fitted for a Boston Brace. While waiting for her appt., I did a lot of research about our options and, thankfully, found this board. All of this led me to find Dr. Ouellette and the Spinecor brace.

It's good news so far. First, Dr. Ouellette measured her curve at 25 degrees, not 34 and, in brace, it's 15 degrees. He seems very optimistic due to her curve being a long Type 2 Thoracic curve. His only concern is she seems to have spinal compression at the top and wants to do chiropractic adjustments to "open up" the vertabrae. I'm concerned about this, but haven't found anything in my research that shows there is harm to manipulating children's spines. He's also concerned about future growth spurts.

I'm looking forward to communicating with all of you. I'd be interested to know if you think it's worthwhile going to Montreal.

Melody
"GeorgiaMom"

Celia

12-14-2006, 03:02 PM

Celia,

There are documented cases of formerly parapalegic/quadrapalegic individuals who learned to WALK again....

Show me *one* documented case of vestibular eye exercises correcting a scoliotic spine. :D

gerbo

12-14-2006, 03:35 PM

aaaarghhh, don't start :D :D

structural75

12-14-2006, 05:28 PM

Celia,

(Gerbo, don't worry, I'll keep this one to a bare minimum... not worth the effort)

I thought things were going well, until now... . I really wish we would all develop a better understanding of things before jumping down someones throat over it. For clarity.........

There is obviously some confusion here about what constitutes the vestibular system... It has to do with the EARS, NOT EYES (Ocular), specifically the canals within the inner ears that appropriates our sense of BALANCE. Which in turn can be affected by the eyes, or vice versa. All relating back to the cerebellum. Are you saying children/people with scoliosis don't often have difficulty with balance/coordination? You said it was a chiro thing, I simply clarified that it was not but rather a neurologist/audiologist specialty. The Dr. was testing her eyes because their coordination reflect inner ear disturbances, thus proprioceptive capabilities.

Vestibular definition:

Vestibular refers to your sense of balance. Your sense organs that tells you which way is up and which ways your head is accelerating is the semicircular canals. They are closely related to your hearing.

The semi-circular canals are three tiny circular tubes at right angles to each other which contain fluid and can sense when that fluid is moving in each of the three dimensions that make up our 3D space.

There are two sets of semi-circular canals; one set adjacent to each cochlea.

Nerve bundles coming from the semi-circular canals join together with your auditory nerve and carry balance signals to your brain.

Many people with hearing loss also have some degree of balance difficulties, since the vestibular (or balance) system and the auditory (or hearing) systems are so closely related.

Many audiologists also have specialized training and equipment to help diagnose and treat people with balance problems.

Let's please be clear on this one, I did NOT say anything about "eye exercises correcting scoliosis", nor did I make any reference at all about "correcting" the spine solely by working with the vestibular system. In its original context, it was regarding the multi-faceted approach suggested by the child's doctor in addition to the other methods being employed... still sounds like a very wise approach to me (there's far more influencing a scoliotic spine than just its curvature!) You told someone it wasn't worthwhile, and I strongly believe that it is, based on physiologic understandings and scientific research. I don't believe it's fair to disaude people on something we don't fully understand.

Why is it so difficult to broaden our perspective on this condition? All we hear about is surgery, bracing and "waiting". I'm not against any of those things, but treatment shouldn't end with that. And why do you insist on jumping on my case for having amicable dialogues on topics that are hardly ever considered, yet quite valuable to possibly many on this forum?

And what is the harm in MRF doing PT exercises at home for the VESTIBULAR system anyway... it doesn't cost a dime to do it at home? It might even help the overall cause... better than nothing.

kindly,
structural

MATJESNIC

12-14-2006, 09:23 PM

GeorgiaMom,

Congrats on your daughter and her success so far. Any time you are dealing with a chiro, he or she will want to adjust your child. The chiro who we initially got our brace from thought Nicole should be adjusted a few times a week. My husband refused to go that route. He said he would never forgive himself if we found out later on that we had harmed our growing child.

Your daughter is young, still growing, and has scoliosis. I would find out from the orthopedic doctors who you trust what they have to say about this. I believe in chiropractors for other things. But this seems too risky.

Also, when we used to go to our chiro for Spinecor, we continued with orthopedics as well. We felt more comfortable doing that. Scoliosis is serious and should be monitored by medical doctors.

With that being said, we only go to the orthopedics in Montreal now, so it doesn't really matter.

It sounds like your daughter had a good appointment there. I am not sure what you should do as far as Montreal is concerned. Do you feel comfortable staying with this chiro?

Do not let any chiro tell you that not having the adjustments will get in the way of the Spinecor not working as well. We have many success stories with Spinecor so far and none of these children are being adjusted.

Hope I am not being too pushy. I know it is so easy to be trusting and willing to try things. But like I said before, we would have to live with the guilt of harming our children for a poor choice that we made.

Melissa

structural75

12-15-2006, 07:31 AM

Celia,

Are you OK? :eek: :)

GeorgiaMom

12-15-2006, 07:48 AM

Thanks for your response Melissa and, no, I don't mind your being very honest. I'm going to have to think about this some more I guess. I'm wondering if I call the folks in Montreal if they would give me their opinion. We are currently looking for a new orthopedic in the area, as we're not pleased with the previous one, especially since he goofed on her x-ray. I'd like to find an ortho who supports our use of "alternative" treatment.

GeorgiaMom

cherylplinder

12-15-2006, 09:45 AM

Georgiamom,
There can be a lot of variance in the measurement of a curve, depending on the vertebrae chosen, time of day of the x-ray, and person measuring the curve, even when 2 docs are reading the same x-ray.
I am excited about your results. You may find your next measurement is much better than the first. There usually seems to be significant improvement at the 4 to 6 week check-up. A mesurement of 15 is great, either way.
I am so happy for you!

Celia

12-15-2006, 03:02 PM

Melissa!!!!! :)

I just got your family Christmas card in the mail ~~~ Your family is *so* beautiful!! Is Nicole the one in the pink ? :p

christine2

12-15-2006, 05:31 PM

Melissa

Our next appt is not till March!!

Christine

Allegra

12-15-2006, 07:55 PM

ok I've been keeping up with the conversation but I haven't said anything yet. I totally agree with scoliosis relating to the ears and eyes and making you stand off balance or just being off balance. I was wondering this: I have had many ear infections throughtout my life so far, and I was wondering if any of you thought that could lead to me being off balance. Then it would lead to me possibly having scoliosis. I would really like to hear your opinions if you would like to offer them. :)

Thank you,
Allegra

structural75

12-15-2006, 08:40 PM

Georgiamom,

His only concern is she seems to have spinal compression at the top and wants to do chiropractic adjustments to "open up" the vertabrae. I'm concerned about this, but haven't found anything in my research that shows there is harm to manipulating children's spines. He's also concerned about future growth spurts.

For what it's worth, it sounds like another case of ongoing chiropractic treatment that will carry no long term or significant effect. The fact is, you'll have to keep going to him in order to 'maintain' what he claims to be addressing (compression). From a clinical and professional standpoint, vertabrae will not "open up" (very misleading statement to begin with) and STAY open for any significant period of time through the use of adjustments given her curvature. Is the "spinal compression at the top" refering to her cervical spine (neck)? If so, I would very strongly caution you about REPEATED adjustments to the neck! Any good chiro would agree that nobody, especially children, should have a need for more than a handful of cervical adjustments within one years time (if at all). If they do "need" them excessively, the chiro adjustments are NOT the answer and should be abandoned.

With scoliosis there is a constant (more than usual) compressional force acting on the spine. Adjusting individual segments is futile at best (maybe for moments of acute pain) as these segments will continue to remain vulnerable to 'fixation'.

As far as the growth spurts... it could be that her body is growing "around" some other primary restriction that is quite possibly not in the spine itself. Adjustments would therefore have little or no effect during periods of growth.

I don't know if you've read any of the previous posts in this thread regarding the mechanics of adjustments, ...that might be helpful to create a better idea about what he is actually accomplishing.

Pediatric chiropractics is becoming the next vogue thing... I personally have serious concerns about infants and children receiving "adjustments" during a crucial time in vertebral, neurologic and soft tissue development. It is a relatively new field with no long term analysis to support its appropriateness/effects on development.

Just my opinion...

Best Regards,
Structural

MATJESNIC

12-15-2006, 09:50 PM

Christine,

Too bad we are all on different schedules. It would be awesome to all go to Montreal at the same time.

Celia,

Thanks so much. Yes, Nicole is the one in the pink. We are all wearing heels. But you can see she is now taller than me. I think she will be a little taller than big sister, too.
Now you see what I look like. You can put my face to my name. The dress I am wearing is so not how I normally dress. I usually dress very conservatively. I don't know what I was thinking when I bought it. That dress drove me crazy that whole day.

Celia

12-15-2006, 09:52 PM

Melissa,

You're beautiful! The dress looks lovely on you :)

GeorgiaMom

12-16-2006, 09:03 AM

Structural,
Thanks so much for your informative reply. I think I am going to hold off on any adjustments for now. I have sent a message to Dr. Coillard hoping to get her opinion as well and perhaps schedule a trip to Montreal in the coming months.

I really appreciate everyone's support and advice. I am still having sleepless nights worrying about whether we've made the right decision with the Spinecor. I know there is no easy answer, so I'll leave it in God's hands that we're doing the right thing.

GeorgiaMom

MATJESNIC

12-16-2006, 09:45 AM

Thank you, Celia,

You are very kind. Just realized I spelled "heels" wrong. Just fixed it.

GeorgiaMom,

I think you are doing the right thing. None of us can see into the future. But you are making the best informed decision with the information you have in the present. I do think you will feel much more confident in your decision when you go to Montreal.

cherylplinder

12-16-2006, 08:55 PM

Another miraculous breakthrough by Canadian docs!
My son has had Type 1 diabetes since he was 4 years old; it has been thought to be an autoimmune disorder, where the immune system attacks the beta cells of the pancreas and destroys them like they would any infection.

Wasn't Dr. Hedden a Sick Kids doc, Celia?

This gives me a lot of hope. Not only does diabetes cost my family around 20,000 dollars or more a year(our insurance costs are around 1500 a month because of all the health problems our family has and for more than half the year, we have to pay for William's supplies until we meet the high deductible. His supplies are around 1500 a month.)But I am most concerned about the long term sequelae to diabetes, heart disease, blindness, kidney disease, stroke,.....for William.

This sounds most promising!!! More than amazing!!!!!!!!!!!!

I really never thought there would be a cure . This really gives me hope. Scoliosis is no different. Thought to be unchangeable unless by surgery after a certain point.

We know so little! I am ecstatic!

Font: * * * * Tom Blackwell, National Post
Published: Friday, December 15, 2006
In a discovery that has stunned even those behind it, scientists at a Toronto hospital say they have proof the body's nervous system helps trigger diabetes, opening the door to a potential near-cure of the disease that affects millions of Canadians.

Diabetic mice became healthy virtually overnight after researchers injected a substance to counteract the effect of malfunctioning pain neurons in the pancreas.

"I couldn't believe it," said Dr. Michael Salter, a pain expert at the Hospital for Sick Children and one of the scientists. "Mice with diabetes suddenly didn't have diabetes any more."

The researchers caution they have yet to confirm their findings in people, but say they expect results from human studies within a year or so. Any treatment that may emerge to help at least some patients would likely be years away from hitting the market.

But the excitement of the team from Sick Kids, whose work is being published today in the journal Cell, is almost palpable.

"I've never seen anything like it," said Dr. Hans Michael Dosch, an immunologist at the hospital and a leader of the studies. "In my career, this is unique."

Their conclusions upset conventional wisdom that Type 1 diabetes, the most serious form of the illness that typically first appears in childhood, was solely caused by auto-immune responses -- the body's immune system turning on itself.

They also conclude that there are far more similarities than previously thought between Type 1 and Type 2 diabetes, and that nerves likely play a role in other chronic inflammatory conditions, such as asthma and Crohn's disease.

The "paradigm-changing" study opens "a novel, exciting door to address one of the diseases with large societal impact," said Dr. Christian Stohler, a leading U.S. pain specialist and dean of dentistry at the University of Maryland, who has reviewed the work.

"The treatment and diagnosis of neuropathic diseases is poised to take a dramatic leap forward because of the impressive research."

About two million Canadians suffer from diabetes, 10% of them with Type 1, contributing to 41,000 deaths a year.

Insulin replacement therapy is the only treatment of Type 1, and cannot prevent many of the side effects, from heart attacks to kidney failure.

In Type 1 diabetes, the pancreas does not produce enough insulin to shift glucose into the cells that need it. In Type 2 diabetes, the insulin that is produced is not used effectively -- something called insulin resistance -- also resulting in poor absorption of glucose.

The problems stem partly from inflammation -- and eventual death -- of insulin-producing islet cells in the pancreas.

Dr. Dosch had concluded in a 1999 paper that there were surprising similarities between diabetes and multiple sclerosis, a central nervous system disease. His interest was also piqued by the presence around the insulin-producing islets of an "enormous" number of nerves, pain neurons primarily used to signal the brain that tissue has been damaged.

Suspecting a link between the nerves and diabetes, he and Dr. Salter used an old experimental trick -- injecting capsaicin, the active ingredient in hot chili peppers, to kill the pancreatic sensory nerves in mice that had an equivalent of Type 1 diabetes.
"Then we had the biggest shock of our lives," Dr. Dosch said. Almost immediately, the islets began producing insulin normally "It was a shock ? really out of left field, because nothing in the literature was saying anything about this."

It turns out the nerves secrete neuropeptides that are instrumental in the proper functioning of the islets. Further study by the team, which also involved the University of Calgary and the Jackson Laboratory in Maine, found that the nerves in diabetic mice were releasing too little of the neuropeptides, resulting in a "vicious cycle" of stress on the islets.

So next they injected the neuropeptide "substance P" in the pancreases of diabetic mice, a demanding task given the tiny size of the rodent organs. The results were dramatic.

The islet inflammation cleared up and the diabetes was gone. Some have remained in that state for as long as four months, with just one injection.

They also discovered that their treatments curbed the insulin resistance that is the hallmark of Type 2 diabetes, and that insulin resistance is a major factor in Type 1 diabetes, suggesting the two illnesses are quite similar.

While pain scientists have been receptive to the research, immunologists have voiced skepticism at the idea of the nervous system playing such a major role in the disease. Editors of Cell put the Toronto researchers through vigorous review to prove the validity of their conclusions, though an editorial in the publication gives a positive review of the work.

"It will no doubt cause a great deal of consternation," said Dr. Salter about his paper.

The researchers are now setting out to confirm that the connection between sensory nerves and diabetes holds true in humans. If it does, they will see if their treatments have the same effects on people as they did on mice.

Nothing is for sure, but "there is a great deal of promise," Dr. Salter said.

© National Post 2006

Celia

12-16-2006, 10:12 PM

MATJESNIC

12-16-2006, 11:06 PM

Cheryl,

I didn't realize you were dealing with diabetes with your son. I'm so sorry to hear that. I know of a few families who would also be elated by this possible breakthrough. I am sharing in your hope tonight. It's interesting because I work with a little boy with autism and when his Dad was in college, out of the blue, he developed type 1 diabetes. They think it was brought on by a virus. I had never heard of anyone that old developing type 1. Anyway, I wish you and your family nothing but good things to come your way. Do you also have a support group for Parents of kids with diabetes?

Mom37

12-18-2006, 10:58 PM

It wouldn't hurt to pay dr Rivard and dr Coillard a visit and make sure the brace is being properly fitted, maybe get better correction and then continue seeing Dr. Deutchman who is closer to you. What do the rest of you think :confused: As for vestibular testing....I think it's strictly a chiropractic thing and it's not done in the Montreal office.

Sorry so late in the post but in private posts it was recommended I tell all of you. Vestibular testing is a medical testing reviewed and signed by an M.D. on reports. We were skeptical of it too. We saw Dr. Deutchman for our initial bracing and did the vestibular testing. My heath insurance paid for the vestibular testing, and in network, so I was reimbursed 100%. The brace and everything else was reimbured out of network. Due to progressive curve we had more physician opinions and an MRI was done. My daughter has Chiari I Malformation (detected by MRI) which a symptom is Nystagmus (involuntary eye movement), and difficulty in tracking objects, which is what that test is for. She also has Syringomyelia (MRI detected too) which scoliosis is one symptom of. Those are the cause of her scoliosis. These medical conditions can be found on www.asap.org if you are interested. My understanding is that many scoliosis patients have Nystagmus or difficulty in tracking objects and can benefit from this testing by following treatment of exercise therapy. My daughters was slight and therapy didn't hurt, but her other medical issues didn't help it amd probably caused it. On a side note, Dr. Deutchman's office called to check on her and her bracing, and I advised of this other medical condition and her surgery date. They were very concerned and wanted to know all they could about it. On day of her surgery, and today to they called to see how she was doing. They really showed they cared even though we are doing follow up on brace closer to us outside their practice, and went to them back in March 2006.

Celia

12-19-2006, 07:48 AM

MATJESNIC

12-19-2006, 08:09 AM

alabama mom

12-20-2006, 02:16 AM

Hello everyone. I am very new to this whole forum/posting thing, but unfortunately I am not new to the scoliosis thing. This is a test post, as I am trying to figure this out. Excuse me for any mistakes, in advance.

alabama mom

12-20-2006, 02:43 AM

Well, that seemed to go ok. So.....hi everyone, I have been reading the forums here for a while now, looking for answers. I am hoping that someone can help me with finding out about getting a spinecor brace for my daughter.

I recently saw that georgia mom was from Atlanta, which is where I was thinking of going to for my child. I don't live too far from there, and I go fairly often.

I am thinking of going to see Dr. Lamantia or Dr. Deutchman. I have spoken to one of them on the phone before. I felt that he sounded interested and concerned, but his office manager/secretary talked ALOT about money. It made me a little nervous.

Obviously, that is not what I am worried about, but I just felt kind of uneasy. I was hoping to get some feedback on this matter, as I see that alot of you have seen these doctors. Specifically, georgia mom and matjesnic.

I would also like to know if anyone knows how or if I can try to get this brace and treatment for my daughter, using my Alabama state sponsored insurance (All Kids). It is basically BC/BS. I would like to know if these doctors, or any one else who fits for this brace, would be able to take my insurance. Does anyone know?

I would greatly apperciate any help here. I feel like I'm going crazy. I will be looking out for any replies. Good luck to all of you and your children. Thank you.

MATJESNIC

12-20-2006, 05:44 AM

AlabamaMom,

Welcome! We are glad to have you join us. I am going to send you a private message.

Melissa

christine2

12-20-2006, 03:31 PM

Hi Alabama Mom

We took our daughter straight to Montreal. We are very happy we did!! You have come to the right place for information. We have learned a ton from these wonderful people. Good luck

Christine

Allegra

12-21-2006, 12:11 AM

Hi,
I was wondering:
before any of your children got spinecor, did any of them have bits of skin next to the curve that were painful at all?

happy holidays!

MATJESNIC

12-21-2006, 05:41 AM

Nicole never had any pain in the beginning. She actually didn't start having any pain until after she had been in the brace for a while. she would have some pain when the brace was off and she was walking around. Dr. Rivard said this is common and nothing to worry about. When I say, "pain" I mean it's probably more of a discomfort. I don't even give her tylenol for it. She just puts her brace back on and it feels better.

Melissa

CurvySAT05

12-22-2006, 11:50 PM

This thread is about Spinecor brace and not arguing. Maybe you can take your discussion about vestibular testing somewhere else where it might be better suited.
Dont want to distract from the wonderful posts that have been made here and all the support for the kids wearing this brace.

gerbo

12-23-2006, 12:19 PM

must agree that these discussions do get a bit out of hand, and I suppose we are all as bad as each other. And indeed it distract a bit from the idea of this thread, i.e. mutual spport and info for and betwen spinecor users.

I suggest that we move this discussion to another thread under "alternative treatments".

I will open a new thread and move what I consider the "essential" parts of my contributions there, and delete the rest. I suggest celia and structural do the same. It might help to clear the thread and the air......

happy christmas

gerbo

Celia

12-23-2006, 01:02 PM

Gerbo,

I just have a minute, we're hosting the celebrations tomorrow *again* :rolleyes: and I have a million things to do :eek: Anyway, I just wanted to say Have A Merry Christmas and I hope Santa's good to you! You really are a dear friend!

hugs,

celia

MATJESNIC

12-23-2006, 05:16 PM

Yes,

I think we should all stick to the Universal rules of never discussing religion, politics, sex or vestibular testing in public. Nobody is changing anybody's mind. Just going around in circles. I'm glad we are putting it to rest.

Merry Christmas and Happy New Year.

cherylplinder

12-23-2006, 06:56 PM

Friends,
I am so grateful for you. Life has been insane lateley. My mom is dying of frontal lobe dementia. The house we are remodeling(money pit) flooded last week. 8ut God is good and it's all good. I cry every day, but you don't lose the people you love without crying.
But every trial builds strength and the ability to reach out to someone else.
And I am grateful for you, the support and love you have offered in a year that I couldn't have done without it!
I look forward to next year, whether it brings surgery or resolution.

I love you!
Merry Christmas!
Happy Holidays!(for anyone that Merry Christmas is inappropriate! :D )

Cheryl

gerbo

12-24-2006, 01:06 PM

............and you clearly do lots of reaching out Cheryl, in a very valuable and meaningful and helpful way.

Wish you lots of strength and happiness

Gerbo

gerbo

12-24-2006, 01:08 PM

mmmhhh Melissa, you're bringing up a few interersting topics there :rolleyes: :rolleyes: ,

Happy Christmas as well

gerbo

gerbo

12-24-2006, 01:13 PM

anyway, this Turkey, quite a decent football player, goes on trial with Manchester United (english football club) He plays fantastic during his trial match and scores 12 goals. Manager comes to him afterwards and says; absolutely fantastic, here is a contract. The Turkey says; not bothered about a contract, just want to know: will I be playing on boxing day?? :o :o :o

MATJESNIC

12-24-2006, 03:28 PM

Cheryl,

My heart goes out to you during this difficult time. I wish we lived closer so that I could be of more comfort. I appreciate you and everything you do. Life is so difficult at times, I know. Here's wishing you a loving Christmas holiday with your family. I hope 2007 will be bright for you.

Everyone else, I wish you all the same happiness in the New Year.

Gerbo,

As always, I have no idea what the joke meant. I don't even get one fraction of it. Please explain.

Melissa

gerbo

12-24-2006, 03:45 PM

it's a very bad joke, but the only one with a kind of christmas theme (suitable for a public forum) i could think of.

If the turkey (as in festive bird) was in the team on boxing day, it meaned he was going to survive christmas day (i.e.; not being eaten.) It is a bad, bad, bad joke, sorry :o :o :o :o :o :o

Mom37

12-24-2006, 10:03 PM

How is your daughter ? What is the prognosis ? I hope all is well.

Great to hear that you were reimbursed for the costs of the test! I don't have much time right now but we did discuss vestibular testing back on page 59 and 60 of this thread. As for right now... I have visions of sugar plums and fairies dancing in my head :p

It will be 3 months until another MRI to determine if her syrinx drained itself with the spinal fluid flow now unblocked from her ventrical, which is the hope. It is 85 percent sucessful. Thank you for your concern. Hope you have a great holiday! I am also greatful for your support, and everyone from the forum, the thread, posts, private messages, emails, cards, gifts, and most importantly thoughts and prayers!

Mom37

12-24-2006, 10:19 PM

Mom37,

I am sorry you are going through all of this. I can't remember how old your daughter is and whether she had a typical curve. I can't find the old thread. Yes, I do believe Dr. D. is a caring individual. I only received out-of-network reimbursement for everything so it ended up costing us a lot of money. I cant remember where you live. What hospital are you going to now?

Melissa

Thank you for your note. My daughter is 12 and we live in the Dallas/Ft Worth metroplex area. Dr. D in NYC fit her for the Spinecor brace as we asked. He is not an Orthopedic MD, but very knowledgeable and experienced in his field. He was backed up by Andrew Mills who did her one month brace adjustment. He said he would have done just the same, and he is THE orthotist with Spinecor. Each insurance is different as we can see. The testing was covered in full due to done by MD and brace out of network, less paid due to out of area. Although none in area, and none in network. Never pursued appeal. Mine required pre certification, and so I found out the day I was leaving to NYC that it was approved. Personal choices for all concerned. For her Chiari and Syrinx we are going to Children's Medical Center of Dallas for Surgical Neurology issues. For her scoliosis we are going to Texas Scottish Rite Hospital for Children. That was our third Orthopedic opinion, and the first to order the MRI. I was extremely impressed by Dr. John Birch at Scottish Rite at our first visit, before we even knew that the MRI would result in a new condition that was the cause for her scoliosis. She had no other known medical issues prior to this. Two other Orthopedic surgeions, one local and one out of state did not pursue MRI or CT scan.

GeorgiaMom

12-30-2006, 09:20 AM

Hi Alabama Mom,
Yes, we live in the Atlanta area and go to Dr. Brian Ouellette. He is a Chiropractor in Alpharetta, GA. (North side of Atlanta.) So far we like him, but it's still very early. My babysitter's friend goes to him as well.

As far as insurance goes, we haven't heard from ours yet. We have Aetna. I have heard that BCBS is not very flexible, but it's always worth a try. Dr. Ouellette's staff is very helpful and willing to work with you to get the insurance approved, if at all possible.

Good luck and let me know what you end up doing.

Georgia Mom

desheah

01-04-2007, 12:18 PM

coming on to ask for some well wishes for us next week when we go back to montreal for another check up. will anyone else be in montreal? lucas has been in the spinecor for 6 months now. i think his back looks really good. i'll attempt to attach a picture that i took a week or so ago. also our holiday card.

happy new year!

deshea

christine2

01-04-2007, 12:21 PM

Deshea

GOOD LUCK!! I looked at the photo and his back does look great. We don't go back to Montreal until March. It is so had waiting.

Let us know asap we will be thinking of you.

Christine

gerbo

01-04-2007, 12:23 PM

wow, that does look good, nice card as well.

Wish you all the best and a good trip!

Be confident

Gerbo

christine2

01-04-2007, 12:32 PM

Hi all thought I would pick your brain. My daughter is 6yrs and wears a spinecor brace. I recently took her to see another ortho just for another opionion and he said to stick with spinecor but wanted her to have an MRI.

The procedure is 1 hour under sedation. I do not get a warm fuzzy feeling from the staff at the hospital (we felt like just a number) and am not getting call backs from the doc. Frankly sedation scares the you know what out of me.

Dr Rivard says he only does MRIs on left curves not right. The doc here says it is routine for scoliosis patients as young as my daughter.

has anyone had a MRI done without sedation? Does an open machine make a difference?

I have a call in to shiners in Springfield Mass. Hopefully I get a better feeling from them.

Christine

mariaf

01-04-2007, 12:44 PM

Desheah,

Best of luck to you next week. I'm sure everything will go well - he does look very good. You will be in my thoughts and prayers.

Christine2,

From everything I have ever heard and read, at 6 years old most orthos would definitely order an MRI regardless of whether the curve is left or right. It is very standard procedure since scoli is not common in children that young. They need to check for things like chiari, etc. that can not be seen on an x-ray. Is it possible that your daughter could stay still for an open MRI without sedation? I'm sure you'd be more comfortable with that :)

good luck,

desheah

01-04-2007, 12:56 PM

thanks everyone! i do feel pretty good, but i'm sure that you all can relate to that anxious feeling you get before an appointment. thankfully, we have family in vermont so we will make it into a mini-vacation since they have a 2 yrs old as well and ruby absolutely loves her cousin!

christine, as for the mri, yes it is standard routine for infantile and juvenile scoliosis patients to get one to rule out any neurological or even missed congenital (fused vertebrae for example) issues as maria mentioned. lucas did have an mri at 19 mos and that is how is tethered cord was found. he had no other symptoms besides scoliosis. i am very thankful that it was found out so soon. i know of other children who don't even have scoliosis and have had a tethered spinal cord and started developing neurological symptoms.

i know there are others (when celia comes on, she'll definitely chime in :p ) who would not have their child sedated for an mri, but i believe that it is better to rule out all the potential underlying causes of the scoliosis and only an mri will do that. also, since lucas had to be anaesthetized every time he had a cast change, i HAD to get used to the idea of intubating him and all the potential risks. in the long run, i do believe the benefits outweighed the risks. BUT lucas had not problems with anaesthesia and others do. just a clarification, sedation does not require intubation!

i hope that answers your question, and if you don't get a good feeling from your local place, then by all means go where you feel more comfortable. we definitely felt like a number at children's in boston, but we also knew that they did a lot of mri's and knew what they were doing.

good luck with your decision!
deshea

christine2

01-04-2007, 12:57 PM

Maria

My daughter is VERY well behaved and she may stay still. Is there a signifigant difference between an open and a closed machine?

I know I need to have the MRI done. I just want to make sure I expore all possibilitys and make the best choice.
Christine

P S To all

I am very glad that the vestibular testing "discussion" moved. It made me feel rather uncomfortable. It is an important discussion however not appropriate for this thread.

christine2

01-04-2007, 01:11 PM

Deshea

Thank you. I know I need to rule out causes with the MRI I quess I am just being overprotective.

I have had to make so many decisions lately and have no regrets so far.

Christine

Celia

01-04-2007, 01:58 PM

...i know there are others (when celia comes on, she'll definitely chime in :p ) who would not have their child sedated for an mri, but i believe that it is better to rule out all the potential underlying causes of the scoliosis and only an mri will do that.

No way.... I'm not touching this baby with a ten foot pole! :D LOL!!! Do I really want to get into a heated discussion with a neurosurgeon???? :eek: I will give no advice and remain forever neutral on *all* matters pertaining to scoliosis - no yeah or nay.

gallathea

01-04-2007, 02:39 PM

Hi Christine:

When we took our 6-year-old to Children's in Boston for the MRI we tried it without sedation, but it was too hard for her. It is a closed tube and very loud, and it lasted for 45 minutes. She made it through about five minutes, and was trying to be very brave, but she started to get upset. We ended up doing the sedation, and it all was fine (she'd been put under general anaesthesia before, though, for something else, so I had seen her go through something similar). The sedation is MUCH less intense than the general--it lasts about 45 minutes.

We had a really positive expereince at Children's--the nurses were really good with her and with me.

Hope that helps. Whatever decision you make will be the right one.

Caroline

MATJESNIC

01-04-2007, 03:27 PM

Deshea,

Your son's back looks awesome.

Christine, the orthos in the U.S. order an MRI if the child is under 11 years of age. There is one girl on Spinekids who has been in a brace since age 8 (at least 7 years) and just found out she had chiari. If they would have done an MRI, they would have taken an entirely different path for her. Of course I don't know any of the details. But I do know that it is considered routine for a young child.

Melissa

desheah

01-04-2007, 04:14 PM

celia, you are too funny!

just for kicks, i want to show lucas' back at 18mos at 68o/45o. it's amazing the difference. after 3 1/2 yrs, i think we are doing pretty well. although i don't want to jinx myself!

deshea

MATJESNIC

01-05-2007, 06:52 AM

Deshea,

The change in your son's back is amazing. I forget what you did at first. Was it casting or hard bracing? When did you get Spinecor? Did they find out what caused the scoli at his age?

Christine,

I have only been in an open MRI myself. Hopefully you can find one near you. I think it is much easier to deal with because you don't have that closed-in feeling. Most likely they will tell you your daughter is fine. But you will be glad you followed your ortho's advice by getting the MRI. I would never not have a test done if an ortho advised to have it done.

When Nicole hurt her neck by turning it the wrong way, her doctor wanted her to have an x-ray done. She was 95% sure it was nothing, but felt better if we had it done. We did and it was nothing.

Celia

01-05-2007, 08:29 AM

christine2

01-05-2007, 06:41 PM

Celia

Thank you !! I read most of the article and will finish the rest tommarrow. I must say it sounds as though it is a crap shoot so I will have the MRI however I am not going to rush so I can find the best way to do it.

have a nice weekend
Christine

desheah

01-06-2007, 12:36 PM

christine2

01-08-2007, 08:48 AM

Celia

Thank you for the article it really helped me make a decision. I scheduled her MRI during feb vacation. I researched all options and need to go with sedation. I do not want it to be too tramatic considering this is going to be a long hall.

I do want to make a quick comment about vest testing without opening a can of worms. When I first found out about the spinecor brace I did a google search for docs and was directed to a chiropractor which does the tests at the initial visit. I must say it was very expensive and made the spinecor treatment seem to be not legitamite. Then I found you folks and was rediercted to Montreal. A fraction of the cost (not that $ is a big issue I would have put a 2nd mortgage on the house if necessary)

As a desperate parent I was on the look out for scammers. I was very glad I continued to look at spinecor because it was the best option for us.

I do need to mention however that some of the vestibular testing does make some sense although there are practioners taking advantage (ie$$$)

I have been seeing a chiropractor EVERY 3 weeks for the last 11 years and have been vitirally pain free because of him.
Christine

Celia

01-08-2007, 10:57 AM

Christine,

I *really* wish that entire discussion in the other thread hadn't taken place. It's not like I'm some reporter for Sixty Minutes...I'm just a parent. Why should I care about this ???? I don't know but I do. What was said months and months ago between we parents in this thread was light frivolous conversation. When my words were taken out of context to suit Structural's slanderous agenda, I had no option but to respond. This happened Christmas Eve and it was highly inconsiderate! I can tell you it ruined Christmas for me.

christine2

01-08-2007, 11:04 AM

I know it must be frustrating but please keep in mind that the reason I come here is to learn and hear different opinions. Even though your discussion gets a bit "heated" at times it is still very informative.

Christine

cherylplinder

01-08-2007, 12:13 PM

Celia,
Don't let structural freak you out. He twisted everthing you said and attacked you at every turn. I only posted once or twice to him and he twisted what I said too. I never said that vestibular testing was not useful anywhere in medicine, only that exorbitant charges for it in relation to scoliosis were motivated by profit and not research. He twisted what I said in his reply to me, and I decided not to argue with that yahoo.
You are one of the most valuable members of this forum and the information you post has saved several infant lives, I would bet. I know the support and information that you and the other Spinecor pioneers on this forum posted and the encouragement that you have given me, gave me the courage to pursue Spinecor for Rachel. I has been such a blessing. She would have already had to have had surgery this year without this brace, probably. With her 38 degree thoracic curve, ( she progressed 20 degrees with 2 cm growth in 2005), and absolutely no correction with a TLSO brace, I was out of options and out of time. The Milwaukee might have held her, but would have been torture. On the other hand, it was the accepted alternative.

This year, she has grown 3 or 4 inches and I don't think her curve has progressed at all. I am fairly certain, even though we haven't had out of brace x-rays, that she has improved out of brace. I know she looks good in brace. She has no pain and is happy.
I thank you all for your help and support. You have been a fortress of support and information and kept me sane this year. I love you all.
Blessings in the coming year, my friends!
Cheryl

Celia

01-08-2007, 12:37 PM

Cheryl,

Thank you for the sweet things you said! You know we have to look out for each other....this is such a long road.

christine2

01-08-2007, 01:14 PM

Cheryl

Well said!!
Christine

mpj

01-08-2007, 01:17 PM

Hi,

Just wondering if any of you who visit Montreal have ever requested copies of your child's xray. I thought if I could get a copy of my daughter's next set of xrays from Dr. Rivard, that she might not need xrays when when we go visit our orthopedic doctor in Madison. Our Madision Dr. could just look at the copies.

Thanks.

Sarah

structural75

01-08-2007, 02:00 PM

Celia and Cheryl,

I'm sorry you have to resort to more negative comments on the matter...

There was nothing "slanderous" or "twisted" about my inital post clarifying Celia's claim that it was a "chiro thing" and that it's a bunch of "phoney baloney". I responded very directly to those comments. Her original comments were slanderous in and of themselves and other people deserve to know that vestibular rehab in conjunction with other treatments is nothing of the sort that you described - a chiro thing or phoney baloney.

...my words were taken out of context to suit Structural's slanderous agenda, ...This happened Christmas Eve and it was highly inconsiderate!
Celia, what is my "slanderous agenda" anyway? It doesn't make me a bad person to consider both sides of the coin, or to clarify a misrepresentations. And Celia, that conversation began on the 9th of December and I attempted to end it on Christmas Eve, but you insisted on keeping it alive.

Cheryl,

I beg your pardon? My initial posts on this forum are anything but rude. They become rude when I get attacked by 'others'.... . I don't like the rude nature of these posts anymore than you do, but let's consider how it began and how it continues to persist with those two individuals making sarcastic and denigrating comments long after I willing "surrendered" to their attacks. I think you're showing a bit of selective favoritism here.

I'm sorry you condemn an entire field of medicine because of a few bad apples out there... but those few 'financially motivated' practitioners do not represent them all, nor does it illigitimize the efforts put forth.
You call that "twisting" your words and being rude? Did you read the post you directed at me? ...now that was rude. Cheryl, calling me a "yahoo", is that not another insult without prompting on my part?

I'm sure the two of you, and others, have proven to be very hepful and supportive to folks here, but that doesn't mean there isn't room for a differing opinion on things. I find the two of you to be very hypocritical. Don't worry, this is the extent of my postings on this.

structural

Celia

01-08-2007, 02:04 PM

Hi Sarah,

If you e-mail dr Rivard privately, I'm sure he will send you a copy of the x-rays :)

christine2

01-08-2007, 02:17 PM

Hi Sara

I had the same problem. But try to E mail him as celia said. I learned my lesson. I will get copies of x rays and reports while I am in Montreal for now on. We ended going to our 3rd ortho opinion with out spinecor x rays. The doc did another. It was of no help to the ortho here or Dr Rivard because of different techniques. Unnecessary rad exposure (BAD MOMMY) I learned a lesson and will be more careful in the future.

Christine

pat

01-08-2007, 04:43 PM

Hi,

Just wondering if any of you who visit Montreal have ever requested copies of your child's xray. I thought if I could get a copy of my daughter's next set of xrays from Dr. Rivard, that she might not need xrays when when we go visit our orthopedic doctor in Madison.

Sarah
Hello Sarah, after every visit w/Drs. Rivard and Colliard, we leave with a disc of our daughter's x-rays. pat

christine2

01-08-2007, 07:32 PM

Hi Pat

WOW! Great info about the disk. I will do the same

Thank you
Chris

mpj

01-08-2007, 08:05 PM

Thanks for the feedback you guys!

We go back for our second visit next week, so I will be sure to ask for a disc.

Sincerely,

Sarah

gerbo

01-10-2007, 03:58 PM

6 monthly review today with xray in and out of brace. Not too unhappy as out of brace xray showed original T11 curve at 20 (from mid to late 20's), and in brace at 15 degrees. (whilst having grown 3.5 cm in 6 months)

Slightly worried as we noted a compensatory curve to the left at about T7, which actually measured at 28 degrees!

However, mr mills thought this was purely due to action of brace and would disappear on discontinuation of brace; i.e. not develop into a permnent curve. Hope he is right!. Will write to de rivard though to see what he thinks

did confirm that once a week washing is essential for brace to keep its proper shape and elasticity, and chnging straps too often is not a good idea as they need a bit of time to loosen up requiring more frequent adjustments

overal we were not too unhappy!

MATJESNIC

01-10-2007, 04:40 PM

Gerbo,

That sounds really good to me. Just curious how long Lisanna was out of her brace before the out-of-brace x-ray was performed. It's interesting that Dr. Rivard is not interested in performing out-of-brace until bracing is almost done.

Gerbo,

Your daughter's curve is quite small compared to my daughter's 2 40 degree curves. So when I hear those numbers I would give anything for them to be Nicole's numbers. I think things are going very well for Lisanna. I wouldn't worry too much about her. How tall is she and any idea if she is almost done growing? Any mention of risser.

I'm very happy for you.

Melissa

gerbo

01-11-2007, 02:31 AM

Just curious how long Lisanna was out of her brace before the out-of-brace x-ray was performed. It's interesting that Dr. Rivard is not interested in performing out-of-brace until bracing is almost done.

1) 2 minutes at the most :rolleyes: :rolleyes:
2) I discussed that and it seems to be a bit of a local "compromise" to do out of brace x rays once a year, as somehow local consultants still feel that gives them a better idea of what is going on. I faintly challenged it, but decided, for once, to go along with it, but won't do so next year.

I wouldn't worry too much about her
I won't, thanks. dr Rivard has already written back reassuringly saying thye see this secondary curve developping a lot, which "will never become structural". I do trust him.

gerbo

MATJESNIC

01-11-2007, 06:00 AM

Gerbo,

I believe Dr. Rivard wants the kids out of the brace for a few days up to one week before the do an out-of-brace x-ray. Or else they are not accurate. You may want to ask him about that.

gerbo

01-11-2007, 06:02 AM

yeah, and that makes perfect sense to me, for this reason i am not going to "allow" any further routine out of brace xrays anymore, as to me they do not give additional info at this stage

christine2

01-11-2007, 06:43 AM

Gerbo & Melissa

My daughter just had an unnecessary x ray too. No more of that. The nurse at the hospital said that they just did a study and that x rays are safe but I will stick to my guns next time!!

Christine

Celia

01-11-2007, 07:35 AM

Gerbo,

That's interesting about the compensatory curve. I've seen that in pictures and over time the curve does resolve. Did Mr. Mills adjust the straps at all ?

gerbo

01-11-2007, 07:41 AM

where did you see pictures and read about this?

mr mills did not adjust anything as he was happy

Interestingly, it completely threw the consultant in that he thought it was the primary curve, had hung the xray the wrong way around to make into a rightsided curve, which did mean that the heart was on the right as well, which initially he said was due to rotation :rolleyes: :rolleyes:

only when i pointed out that "it seemed to have moved upwards", did he realise he was looking at a secondary curve. He then needed to have a chat with mr mills to get advice on what to think/do

gerbo

01-11-2007, 08:11 AM

Dr Rivard reply to my concerns: very quick, very reassuring

> Mr Huisman,
>
> What you are describing to me is a
> completely normal evolution of this curve and the
> new secondary curve will not become structural. We have many
> cases like this and no one of those curve had become
> structural after weaning of the brace.

The secondary curve will dissapear without any effect on the primary curve

>
> Best regards
>
> Dr Rivard
>

MATJESNIC

01-11-2007, 11:01 AM

How do you know when it is structural or not? I never asked about Nicole's new 2nd curve. It started out as 10 and is now in the high 30's. I guess it is structural since they changed the bracing to try to hold it. Did I ever tell you that Dr. Coillard actually had a different opinion than Dr. Rivard and believes the the 2nd curve was actually the primary curve. Interesting.

gerbo

01-11-2007, 11:40 AM

well, hearing that really makes me feel better......... :( :(

Celia

01-11-2007, 11:53 AM

Gerbo,

I'll have to take another look, but I thought I saw the pictures on the Spinecorporation website. If you look at Case study "C", the lower part of her spine is going off to the right and over time it becomes more centred. Look at 13 months versus 15 months in the brace.

http://www.spinecorporation.com/English/CaseStudies/CaseStudy.htm

gerbo

01-11-2007, 12:00 PM

just about can see what you mean, not as explicit as ours i'm afraid. Well, that's another worry for the next 6 months, just have to trust they know what they are doing.....

jlt1963

01-12-2007, 10:38 AM

I'm not sure I'm doing this right as I am a new user but hopefully this will work.. :confused: My 15 year old daughter, Kyra, just got a spinecor brace from Drs. Deutchman and Lamantia 6 days ago. I think they take an x-ray every 3 months with the brace off. I don't know how long she is supposed to be out of brace before the x-ray so I will have to ask them about this. I can see it may not be a real accurate picture if its only a few hours out of brace before x-ray. Also, since I'm new here and haven't quite figured out how to use this I will probably be asking questions that have already been asked but has anyone's curve gotten worse in brace? My daughter is a 21 on the primary curve.
THANKS for any information anyone can give me on the spinecor!
Jean

Mom37

01-12-2007, 10:40 PM

Christine,

I found this article on MRI's and hopefully it will make you feel more comfortable with whatever decision you choose to take:

RM Schwend, W Hennrikus, JE Hall, and JB Emans

Childhood scoliosis: Clinical Indications for Magnetic Resonance Imaging

http://www.scoliosis-support.org/uploads/clinical_indications_for_mri.pdf

Deshea,

The difference between the first and second picture is REMARKABLE!!! :)
I am as usual catching up and was excited to see this. I skimmed it and willl read again in detail. I was in the process of trying to compose letters to all the doctors my daughter saw to advise what has hapened medically and to advise the situation of considering MRI before a third opinion, so MRI can be considered more often in rapid progressing scoliosis patients before it extremely high. I hope to gain more insight based on this. I will read more thoroughly, and really appreciate it. I absolutely recommend MRI to rule out any spinal cord or other medical issues. My daughter had no medical history before scoliosis, and had Chiari. My daughter was 12 and didn't need sedation, but my other daughter needed an MRI to rule out neurological issues while preschool age, and she was sedated. It was at a Children's hospital and it was necessary and MRI made it so much less stressful on her, us (her parents), and the people doing the test. Best wishes to you. My daughter's curve progressed, but I beleive the fact she does not have idiopathic scoliosis and high curve, and progression, may be a factor, and am still using Spinecor, as it is still worth the effort.

lauralee76

01-14-2007, 08:57 PM

It took me about a week, but I finally read this entire thread :) .

We have pretty much decided that if our son needs bracing, we are going to go with a SpineCor. We are awaiting a response with appointment set back from Shriners Hospital in Chicago (we are from east central WI). Does anyone know if the doctors there will use a SpineCor if adamantly requested? If needed, we will travel to Erie to get one, but we are hopeful about Chicago.

Thanks!

jaymes10

01-14-2007, 09:52 PM

To my knowledge neither Shriners in Minnesota or Chicago offer the Spinecor bracing. As we are from Appleton we traveled to Erie PA...its not a bad ride 10 1/2 hours one way. You go for the initial appt. then return in 1 month and then return approx. every 3 months. If you call Shriners in Erie direct you can get scheduled for an appointment and then complete the paperwork when it comes in the mail...it does save some time. There is a chiropractor in Chicago Dr. Pappas that offers Spinecor but he has not been doing it very long and you need to pay upfront approx $4800.00 then be reimbursed by ins.

lauralee76

01-14-2007, 10:04 PM

Dawn-

I just responded to your private message (I am a bit slow...eh?).

We are going to give it a shot at the Chicago Shriners since we don't even know yet if a brace is needed. If we need one we will travel to Erie if needed.

How long has your daughter been in the brace? Any improvements yet?

desheah

01-15-2007, 11:23 AM

hi everyone,

we are back from a wonderful weekend in vermont visiting relatives with a quick trip to montreal on thursday for lucas' appt. he has been in the spinecor for 6 months now, and we are relieved and happy to say that he is stable at 19o/13o (was 18o/14o initially which is statistically no change). he does have rotation on one vertebrae (phase 1) but no others, but that is how is has been from the beginning. we are very happy that we can continue this course of treatment. :D

my best,
deshea

Celia

01-15-2007, 11:48 AM

Deshea,

I'm *absolutely* thrilled with the news!! Hopefully with time there will be further correction and if he just maintains a curve under 20 degrees he'll probably be in good shape once he hits the adolescent growth spurt. *~Two big thumbs up ~* :p

Carly's Mom

01-18-2007, 10:54 PM

I just do not know exactly where to go for the spinecor brace. Has anyone heard of Stephanie and Gary Smouse in the Houston area? Mr. Gomez and Dr. Marco in the Houston area? We live in Fort Worth, Texas. We just want to know where the best place to go is that is not too far or expensive. :confused: My daughter is 14 and has a single lower curve of 32. Risser 0.

MATJESNIC

01-19-2007, 07:30 AM

Hi Carly's Mom,

Welcome. Basically, most of the places to get the Spinecor brace in the United States is from chiropractors. The exception being the orthopedics in Eerie, Pa. That is a Shriner's Hospital which gives free medical care to those who qualify. Many of us here in the States have chosen to travel to Montreal where the inventors of the Spinecor will fit your child. True, it is out of the country and quite far. However, I think they charge less for the brace and less for the follow-up visits. So you will probably end up paying less or the same. Plus, you get to brush up on your French!!! I feel better going to them because they are orthopedics and it is their brace. You can read about my daughter's journey with Spincecor on some old threads here. Let me know if you want to talk further. You can read about my daughter in my signature. Good luck.

Celia

01-19-2007, 10:17 AM

Hi Carly's Mom,

I've heard of Dr. Gomez, he is *very* dedicated to his craft. I believe he is a medical doctor who chose to go into orthotics when his own daughter developed progressive infantile scoliosis at the age of one - as far as I know she never required surgery. :D

*********

Kalarasy

01-19-2007, 06:24 PM

We just came back from Montreal. We had our follow up after almost 2 months. My son's curve went down to 3 degrees. Sometimes it seems to be unbelivable. He had a 31 thoracic curve that went down to 7 degree after the intial app. We are very happy that his curve went to 3. Dr Rivard is very very nice.
Adriana

mpj

01-19-2007, 09:45 PM

Hi,

We just got back from Montreal as well! Everything went well as far as we can tell. Dr. Rivard said that she went from 9 down to 7 degrees. Not a big difference if any, but we are happy so far and Dr. Rivard was optimistic as well. Do most people get much correction at the one month follow up? The best part of our visit you ask? We got to meet Adriana:) It was so nice to chat with you!

Sincerely,

Sarah

MATJESNIC

01-20-2007, 07:05 AM

That's great news, Adriana and Sarah!! It's wonderful that you were able to meet each other, as well.

Carly's Mom

01-20-2007, 10:29 AM

I called yesterday twice to Houston to talk with someone about the brace and cost at Dr. Gomez office. They never returned my calls. The recpetionist did say that I needed an Orthopedist to write the prescription. I told her how Dr. Gomez told me before that he works with an Orthopedist out of Houston and that he could write it. I had trouble trying to find an Orthopedist here that would write one. Our Chiropractor gave us one but I don't know if they will take that.

I found this on the internet from Dr. Gomez.

"Miguel Gomez CO, MD reminded those present not to forget the transverse component of scoliotic curves, along with the more obvious coronal and sagittal manifestations, noting that for best results the orthotist needs to consider the three-dimensional characteristics of each individual curve."
http://www.oandp.com/news/jmcorner/2006-07/1.asp

christine2

01-20-2007, 02:01 PM

Sarah

My daughter actually went up from a 7 to 11 degree curve at the 1 month but there is room for error in x rays. For some reason I get the feeling that the initial correction you get with young flexable curves is going to be the final results (only my impression not from research)

I sounds like all is doing great, I am happy for you!!

Christine

mpj

01-20-2007, 09:39 PM

Christine,

I hope you are right, because we could really live with a 7 degree curve. :)

Sarah

Celia

01-21-2007, 10:01 AM

It makes me *so* happy to read all the wonderful successes! This really isn't so difficult is it ??? :D

*******

MyBabyGirl

01-23-2007, 10:48 PM

gerbo

01-24-2007, 05:00 AM

good question and indeed one always need to keep an open mind about these things.

a few pointers

* not all of us use dr rivard (too far when you live in the UK) (saying that, the orthotist attached to the orthopaedic surgeon my daughter sees happens to be the manufacturer of the brace, so he got personal interests)

* not all of us have universally excellent results, so if you are going to falsify, why not falsify all (conspiracy theorist; they do that deliberately to distract from their true devious nature)

* they are "proper" spinal doctors and have to much to loose if they are "found out" (but george bush was meaned to be a "proper" politician with much too loose if he would get things wrong or deliberately give incorrect information, see what happened there)

* most of us will actually have seen the actual before and after x-rays and "witnessed" the improvement (conspiracy theorist; yeah, and we all witnessed the apollo moon landing, whilst clearly this was all set up in a hangar in the nevada desert)

* we all have looked at our children, seen that they looked straighter, felt more comfortable...(ok,just wishful thinking)

So, yes on reflection, I think that all the other doctors are very sensible to continue to use their "savebet choice" of a hardbrace which we know often doesn't work and makes life hell for the children who have to wear them waiting for their inevitable surgery.

Still, good question (mean it, considered this myself early on)

MATJESNIC

01-24-2007, 06:57 AM

Gerbo,

I GOT ALL YOUR HUMOR AND WIT TODAY!!!! Well done!!! Except that crack about my President, but I am sure it was said with great love!!!!

Now, about the Spinecor results. Of course, we are not all getting amazing results. My daughter's curve has not gone down at all out of brace.

Also, nobody has ever promised me great results. Every orthopedic we have seen has said that nobody knows how this is all going to turn out. Well, maybe God does. But none of us humans do.

There are a few kids who have small curves who are doing great with Spinecor. But the rest of us are struggling just like anyone else in any brace.

Nobody has come on and said this is an amazing miracle that has happened.

The reason the brace has not "caught on" in the U.S. is a complex one. Some of the factors include money, training, etc. The orthopedics I know here are not going to prescribe a brace that is relatively new and has not shown amazing results for kids with large curves like my daughter's. I can understand that. That is why we chose to do this on our own.

Melissa

Celia

01-24-2007, 07:45 AM

Gerbo,

I GOT ALL YOUR HUMOR AND WIT TODAY!!!! Well done!!! Except that crack about my President, but I am sure it was said with great love!!!!

Didn't we resolve not to discuss matters relating to sex, politics, religion or the "V" word - Vestibular testing :confused: :D

********

gerbo

01-24-2007, 08:20 AM

you think it is a sexual problem? Now that explains a lot..... :D :D

cherylplinder

01-24-2007, 08:50 AM

Computerdown.RachelgotagoodreportThursday.22T20LYe ah.

desheah

01-24-2007, 09:26 AM

congrats cheryl and rachel! can't wait to hear more once your computer is up.

deshea

desheah

01-24-2007, 09:31 AM

Celia

01-24-2007, 10:57 AM

you think it is a sexual problem? :D :D

Gerbo,

Leading question if I ever saw one! LOL!!! :D

MyBabyGirl,

We also did serial casting for a few years with Deirdre and her stand up curve in the cast was brought down to the mid teens from 60 degrees. After being cast free for about three weeks before going into the Spinecor brace, her out of cast stand up curve was about 20 degrees. There is no doubt in my mind that her curve would continued to progress with time. She has been wearing the Spinecor brace for about a year and a half and her in-brace curve is 1 degree.

Personally, I think the reason why the spinecor brace is working so well for us is compliance and the fact that Dr. Rivard and Dr. Coillard are dedicated to see this whole thing work unlike most doctors/orthotists who have a couldn't care less attitude.

******

mariaf

01-24-2007, 02:01 PM

I'm just curious as to why x-rays are taken IN the spinecor brace, not out of it. I only ask this because when David wore a hard brace for about three years, his doctor at Hospital for Special Surgery in NY always took an x-ray without his brace on. That was clearly the number she was more concerned with - his out of brace measurement.

Hence, my curiosity. Does anyone know the answer? I've just always wondered about it.

Thanks.

p.s. for those who wear, or did wear, a hard brace, did your orthos routinely take out-of-brace x-rays as well?

desheah

01-24-2007, 02:33 PM

hi maria,

lucas did wear 2 hard braces concurrently (a tlso and charleston) for the 1st year (18mos-24 mos). he was only x-rayed in brace at the follow-up appt for the tlso after a month of wearing it. the rest of the year, he was x-rayed out of brace. he never had an in brace x-ray with the charleston.

i actually had a major problem with this since if lucas' #s were getting worse (which they eventually did), how do you know how the brace is affecting the curve. is the brace not pushing in the right area? i would prefer to have in brace x-rays during the routine visits, and then perhaps have an out of brace x-ray once every year. i know that you would like to know what the out of brace x-ray is, but if the brace is ineffective and your cobb is increasing, how will you know this without an in brace x-ray. i had many "discussions" with our first ortho about this. the orthotist and orthopaedist always said that they could tell where the brace was pushing based on where skin was red. needless to say, we went elsewhere after a year since we felt like they were not committed to bracing conservatively and were essentially waiting to perform grow rod surgery.

i feel like i'm rambling, but hopefully this makes sense. :p

deshea

p.s. good question!

LindaRacine

01-24-2007, 02:41 PM

Hi Maria...

With hard braces, I believe xrays are taken with the brace on, once the child has worked up to the maximum number of hours that the brace is to be worn. That xray tells the physician if they're getting enough correction. (I believe that research has shown that if they don't get at least 50% correction, there is little chance that the brace will be effective in the long term.) After that, xrays are taken out of the brace, to monitor the child for progression.

Regards,
Linda

desheah

01-24-2007, 03:35 PM

linda,

that is true that after a month when lucas was wearing the brace for the prescribed # of hours, we went back and had an in brace x-ray after a bit of tightening prior. lucas was corrected 50% and that was the magic #.

again, i know this isn't the normal case since lucas is so young, but he was growing quite rapidly during this time (which is true in adolescent cases as well although perhaps less so in the trunk area). i was really unsure that the brace was holding him in the right position. even when he outgrew his first tlso after 6 months, we did not get an in brace x-ray in the new tlso. i was quite flabbergasted. :mad: -- i will stop here because it's taken years of therapy for me to talk calmly about our first ortho! just kidding, therapy in terms of chocolate (right, celia :D ) and wine!

deshea

christine2

01-24-2007, 05:16 PM

Mybabygirl

I am going to put my 2 cents in. I do not know if spinecor will work. I do not know if Dr Rivard and Dr. Colliard are being 100 % honest about their results. I do know that this is our only chance to avoid surgery. My daughter is only 6 and had a 33 degree curve (not good) If we had chosen a hard brace it would have be damaged her muscles, lungs and mind. I am a great judge of character and get the feeling that the docs in Montreal are truley in it for the kids!! We have seen a few other orthos and have gotten the feeling from them that they do not care, we were just another # and there is nothing they can do but wait for surgery. I did not accept that and neither will the docs in Montreal.
I have said it before it is all a crap shoot!!

Maria

I think that out of brace x rays in spinecor are useless until the muscles in the body are retrained to hold the in brace curve.

We just made our mnext appt. in Montreal March 1 2007. I can't wait.

Christine

MATJESNIC

01-24-2007, 06:17 PM

Maria,

That is a good question and lucky for you I asked that question to the doctors in Montreal during one of our visits. Basically, they said that out-of-brace x-rays before the child is almost done with bracing (at least a 3 risser) is basically unimportant because it does not mean much. The back and the spine are going to go through changes and measuring it now without the brace is not any indicator as to how it will end up. I am not sure if they believe this for the hard, as well. Someone can ask next time they go.

Remember, an in-brace x-ray in a Spinecor is totally different from an in-brace x-ray in a hard brace. The hard brace is pushing the spine straight and hoping for a 50 percent correction that is temporary. The Spinecor is helping the body to begin moving a different way. The doctors are pleased with a 10 degree correction in-brace. Two totally different philosophies. Most orthotists will keep making changes until they get the 50% decrease. On the other hand, there is not much that can be done to the Spinecor to make more of a decrease. It gives you a more accurate view of what your final correction may be.

What makes me concerned is when I hear parents being given false hopes by being told that their child's curve went down out-of -hard brace, and their child was not out of the brace for any length of time before the x-ray was taken. That is a very inaccurate out-of-brace x-ray.

I have rambled long enough. I hope I answered everyone's questions.

mariaf

01-24-2007, 08:46 PM

Thanks everyone for answering my question. I think I understand now that the Spinecor in-brace x-rays are supposed to be a reflection, or rough prediction, of how the curve will end up. Makes sense then to only be concerned with the in-brace number to see if the muscles are being trained properly. The theories behind the Spinecor, in my opinion, certainly make at least as much sense as those behind hard bracing. Hopefully, in the future it will be more widely available.

Desheah,

I totally agree with you that many orthos are just waiting to perform growing rod or other surgery. Our old ortho once said something to the effect that in some cases the brace was just buying time for some more growth. I knew what she was implying and it did not sit well with me. It's time for more alternatives like the Spinecor and the stapling to be offered to more of these kids - they may not be for everyone but there certainly are many kids who could benefit from them.

Celia

01-24-2007, 10:03 PM

.... we did not get an in brace x-ray in the new tlso. i was quite flabbergasted. :mad: -- i will stop here because it's taken years of therapy for me to talk calmly about our first ortho! just kidding, therapy in terms of chocolate (right, celia :D ) and wine!

Deshea,

I can totally understand your frustration! I didn't know you ate chocolate as well :D That is too funny! So chocolate is a common coping mechanism for a number of us. LOL!!! They should have a box of chocolates in the clinic room when parents first find out their kids have scoliosis. My main form of escape is to turn the music *really* loud when no one's around... I don't know why but it works for me.

**

gerbo

01-25-2007, 02:21 AM

when we were still working with a hard brace we had to "fight" to get an inbrace xray and when we eventually got one consultants were not concerned at all about the "only" 25% reduction and no attempt was made to try to improve the correction towards the 50%. My conclusion was that really they were not interested, bothered and didn't have a clue. the frightening thing is, that this seems to be common practice in the UK. What hope scoliosis sufferers for a non surgical solution to their problems!!

Kalarasy

01-25-2007, 08:55 AM

When I first got the Providnce night brace for my son his thoracic curve was 22 degrees. The doctor took one X-ray with brace on while lying down and his curve was 15 degrees. He said the brace is working very good, we got 7 degrees corection. My son couldndn't wear the brace too long, so we ended up at 31 degrees in one year. When we saw Dr. Rivard he did an x-ray without the brace while lying down and his curve came down to 15 degrees. Now I wonder was the Providence night brace really working? My regular doctoe never did an X-ray without the brace while lying down, even though I asked for it. I went against his recomandations and got the spinecore brace. Sometimes I can't belive myself that the spinecore brace can help so much, but you know I got the x-ray and I can see my son position. So I say thank you God every day for my son's brace. I think it is worth trying it. It is better to choose spinecore than hard braces.
Adriana

MyBabyGirl

01-25-2007, 03:02 PM

Since you all see Dr. Rivard and you all seem to get similar results (which are outstanding , yet rather unusual in the field of scoli) do you ever wonder/worry if he could be bending (no pun intended) his facts and figures to 'sell' the success of an otherwise new-to-the-field brace?

I mean, it literally sounds too good to be true! And you know what they say about 'when it sounds too good to be true...it probably IS.' Why isn't absolutely every doctor prescribing this brace if it consistently gets these wonderful results? Why does anyone have to endure the other kinds out there.....?

I realized, as I posted that question, that it might seem like I was trying to insight a riot. :( But on a blog, there just doesn't seem to be many options to show my true curiosity about what your (the collective 'your') experiences have been...your thought processes are and continue to be....etc.

This fact-finding mission (read: roller coaster) I have newly found myself on would be alot easier over coffee, donuts and large box of kleenex. But I don't get that option! :(

I find myself the mother of the only girl in her entire middle school who is about to put on a scoli brace and wear it 22 hours a-day for the next 3-5 years. I also find myself hunting, madly, through the internet for any tiny crumb of information I can possibly get to educate myself about this subject that I have found I know NOTHING about. All the while being strong and 'we'll get through this' in front of my daughter, her brother and even her father.

So, please bear with me as I try to ask questions that I cannot find answers to anywhere else. I don't mean the questions to sound skeptical at all; I am just trying to find out, quickly, what you all have had to work out over time. I am afraid of to spend years going down a wrong path only to arrive in a position where we have run out of options.

I know that we could wait too long and then stapling (if we chose it) would be taken off the table because she is done growing. That scares the you-know-what out of me.

Anyway...way too long here. But please hang in there with me...you little tiny people in this little box, called my computer, are all I have right now!!! :o

MBG

desheah

01-25-2007, 04:06 PM

mbg,

no tweaked nerve here! please ask questions. we were all in your place once and realize the emotional roller coaster especially at first (and at every appointment). we're all here to help one another and hopefully, learn what we don't always get from appts.

deshea

mariaf

01-25-2007, 04:26 PM

mbg,

No tweaked nerves here either. Please don't be afraid to ask questions. One of the reasons we are here is to share our experiences in the hope that we can help someone else.

good luck,

Snoopy

01-25-2007, 06:03 PM

MBG,

No offense, but are you sure your daughter is the only one in her middle school who wears a brace? I too thought my daughter was the "only one" when she was prescribed a brace. Funny things is, once she started talking about it, we found more and more kids who were in braces, one of which lived in our own neighborhood! Again when we found out she needed surgery, we thought she was the only one...not true. Another young lady had the same surgery a year or two earlier and a boy in her class had it done about 9 months before Jamie and just never knew.

I know this is an amazingly hard time for you (and your family), but you will get through it. Of all the times for a child to go into a brace, I truely believe it is hardest in middle school. Middle school seems like the place all the kids are trying to find there place in this world and being different in any way, is difficult. Shoot, just being in middle school is difficult!! Please know that we are all here for you and we've all been in your shoes. It does get better, I promise!

Have you talked to a guidance counselor and/or nurse at school? I know they can't give you names of any kids who have Scoliosis, but our guidance counselor took my information and passed it along to the parents of the other kids with Scoliosis and left it up to them to contact me. It might help.

Mary Lou

MATJESNIC

01-25-2007, 06:42 PM

You would have to say a lot to offend us. Asking questions is good. We have all been where you are right now. Most of us are still on this journey. So feel free to ask away. Many of us are unsure whether we have taken the right path. But we do know that we are doing the very best for our children with the information we currently have. We can't ask much more from ourselves, now can we?

I wish you and your daughter the best of luck. We are all here for you even if it is just to be a sympathetic ear. Nobody else will appreciate what you are going through like we will. I know for myself that most of my friends are very uninterested and/or unsympathetic. So I am glad I have y'all.

arairdon

01-25-2007, 07:40 PM

I just thought I'd add my experience. In the 5 years that my daughter wore a Boston Brace, she only had 2 x-rays that were in brace. The rest were taken out of brace for varying amounts of time (depending on how long we sat in the waiting room).

I also agree whole heartedly that Dr. Rivard and Dr. Coillard are trying to figure out the best course of action for your particular child.

Ann Rairdon

mariaf

01-25-2007, 08:09 PM

Mary Lou,

How have you been?

My experience was actually similar to MBG's. When David wore his brace, I wanted to make the gym teacher aware of it, and he happened to come out with the fact that he never had a kid in his gym class with a brace before. He didn't mean anything by it - he just said it in passing to explain his lack of knowledge about any restrictions, etc.

In David's school I am nearly 100% sure nobody else wore a brace - but it only went up to 8th grade. However, that still includes kids who are up to age 13/14 or so.

I think it's just kind of a random thing. One school may have several kids and another just one.

I do agree, though, that often when we are going through something, we think we are alone - and then all of a sudden we start talking about it and find out others are dealing with similar issues.

take care,

gerbo

01-26-2007, 02:05 AM

So, please bear with me as I try to ask questions that I cannot find answers to anywhere else. I don't mean the questions to sound skeptical at all; I am just trying to find out, quickly, what you all have had to work out over time. I am afraid of to spend years going down a wrong path only to arrive in a position where we have run out of options.

sorry MBG if my reply was a bit sharp, I was just in that kind of mood at the time. You asked a very valid question, one which I asked myself, initially as well. And yes, we all have been there. searching for the "ultimate" answer and knowing "for sure" we were doing the right thing and nothing more could be done.......only finding out that there were no certainties, no garantees, its all judgements we make, balance of probabilities to be considered....., and you need to go through that, as, whatever the outcome, you (and your daughter) will have to live with the consequences of the choices you make. And as you cannot look in the future now and predict outcomes, you need to lbe able to look back from the future and be able to say to yourself, I considered all the options carefully, and yes, I made the right choice (whether the outcome was favourable or not)

So, keep them coming (those questions.....)

gerbo

01-26-2007, 05:26 AM

and just to confirm, i have no doubt in my mind we made the right choice by changing our 12 year old daughter (29 degree T11 curve) from a hardbrace to a spinecor. Correction is better, spinecor is so tolerable (one year of hard brace was horrible, child-cruelty and torture Lisanna still calls it) so quality of life is so much better (which is very important)

Have you looked at the spinecor website to see their "evidence"? I know, only one article published, compared to many on bostonbraces, but level of detail and results (better than published boston brace results) mean you have to at least consider it.

If anything, if you are not sure (and you can afford it) have a trial fitting of the spincor and see what it looks and feels like. You won't loose anything but money and would get peace of mind in return.

(....and so sorry again for my reply, it gives the correct considerations, could have done without the cynical bits. Saying that, Melissa did get all my "wit and humor" for once, which is worthwhile if it cheered her up a bit)

Celia

01-26-2007, 10:52 AM

sorry MBG if my reply was a bit sharp, I was just in that kind of mood at the time.

Gerbo,

Your post was very VERY funny!!! :p I love the concept of the conspiracy theory LOL!!! :D :D

MBG,

This is understandably a difficult time for you, but hopefully we can soften the blow by letting you know that some of us are defying the odds and we're still standing!!! :cool:

****

gerbo

01-26-2007, 11:31 AM

I know it was kind of funny, but that is easier for you to appreciate, (and ofcourse a revelation for melissa to experience :D ) but you know me, and know i do not mean any harm. For somebody just starting "on the road" it reads a bit as a "i'll put you in your place" type of reply.

re CT; the one which doesn't go away here in the UK is about Diane (PoW) being murdered by the royal family, rather than just having an ordinary carcrash. Did you hear about that in the frozen wastelands of Canada??

Celia

01-26-2007, 11:41 AM

Yes, we've heard that one here in the frozen tundra! ;) The one I really like is Prince Harry being Princess Diana's love child with Mr. Hewitt.

*****

gerbo

01-26-2007, 11:47 AM

and that one is really easy to believe, spitting image. More thoughts on this here http://uk.answers.yahoo.com/question/index?qid=20060705030835AAdFU20

MATJESNIC

01-26-2007, 11:52 AM

Gerbo,

Please don't beat yourself up. I doubt you have offended anyone. Yes, it was nice to finally laugh at your sense of humor and great wit. We can't be serious all the time. We must be able to lighten up during difficult times.

Celia,

I laughed out loud when I read your reminder of the topics to avoid. Politics and religion are huge discussions to avoid at gatherings here in the U.S. I wonder if it's the same where you (and anyone else in another country) live.

gerbo

01-26-2007, 12:01 PM

Dutch just love discussing anything controversial they can think of. Its kind of a game. And whatever the heatedness and the eventual outcome of the discussion, we never fall out in the end.

its different in the UK (were i live now) and often my wife (british) instructs me not to talk politics at the dinnertable with her family. Saying that, my mother in law just loves discussing tony blair and the problems he and his friend (whose name shall not be mentioned to prevent offence) are causing in the world.....

Snoopy

01-26-2007, 12:29 PM

Hi Maria,

I'll send you a p.m. so as to not take up space on the Spinecor thread.

Mary Lou

Celia

01-26-2007, 12:45 PM

... that one is really easy to believe, spitting image.

Who's the Daddy? :D

http://i41.photobucket.com/albums/e251/sealy25/prince-harry-windsor.jpg
http://i41.photobucket.com/albums/e251/sealy25/hewitt.jpg
http://i41.photobucket.com/albums/e251/sealy25/1Charles.jpg

****

MyBabyGirl

01-27-2007, 12:12 AM

I did ask about the Spinecor at the Orthotist's office. He didn't know of anyone who prescribes or 'fits' them. He explained that a lot of times 'we' will see a regional trend and our region is still in the Boston. We go back to Doc. in Feb and will ask him more about it then.

So here are some questions: (you told me to ask!)
1. Does Shriners use Spinecor/Boston or do you just go when it is time for stapling or surgery?
2. When you wear the Boston don't the muscles of the torso weaken completely from not using them for 22 hours a day?
3. Don't they suggest some kind of physical therapy to re-train and strengthen these muscles to support the spine in the shape that it should be growing?
4. Should we change to a firmer mattress just so that it is easier to sleep in a brace? (her mattress is very soft right now)
5. Can she still ride the bus or should I start transporting her myself?

I will start there....but be sure that you haven't heard the last from me. :(

Thank you, thank you, thank you.
MBG

arairdon

01-27-2007, 07:06 AM

MBG

When my daughter was wearing the Boston Brace, she was still able to ride the bus just fine. We did have times when sitting in certain seats were uncomfortable because of the pressure it put on the front of her legs.

She did lose muscle tone, but we tried to make sure that her time out of the brace was very active. (we even did some private yoga to just work on those specific muscles.)
Physical Therapy was never recommended and I asked numerous times!

Good luck with everything.

Ann Rairdon

Snoopy

01-27-2007, 08:06 AM

MBG,

I think Shriner's in Erie, PA uses the Spinecor. You don't have to go to Shriner's just for surgery. They have the best of the best when it comes to doctors.

When my daughter was in a Milwaukee brace (and later a Boston brace), her doctor sent her to a physical therapist to learn stretches/exercises to do at home. The therapist followed her for several weeks to make sure she did them properly.

Mary Lou

mariaf

01-27-2007, 09:03 AM

MBG,

I sure HOPE we haven't heard the last from you!! :)

Shriners uses many different methods to treat scoliosis. It is one of their specialties. They prescribe braces when necessary (although only one or two Shriners Hospitals use the Spinecor I believe).

Stapling is only one option offered at Shriners - it is generally offered as an option in cases where the child fits the general criteria: (1) a curve of between about 20 and 40 degrees and (2) that the child has some growing left to do.

If I can answer any further questions, about the stapling or Shriners or anything else, feel free to e-mail me at mariaf305@yahoo.com.

As far as letting your daughter take the bus, I think it's generally best to keep things as normal as possible for her, unless there is some specific reason you'd rather she not take the bus.

good luck and keep posting :)

Celia

01-28-2007, 03:50 PM

Hey Chaps, :)

I was wondering if anyone here had a similar experience.... the snap on the pelvic base has become worn with use and the #2 elastic band won't snap into position and what I've had to resort to is use the snap next to it which is slightly further back. There is nothing wrong with the elastic band but it's the base that's causing problems. Does the shoe repair man fix such a thing???? Our next appointment isn't until March so I don't know if I'm doing the right thing by making this minor adjustment to the brace and whether this will have an impact on her correction. What should I do?

****

arairdon

01-28-2007, 05:21 PM

Celia,

I think that the shoe repairman can probably fix the base too. When this happened to Lauren... We did several things. First I did exactly what you did, I changed to the next closest snap. Then I tried hooking it with a bread tie (I hooked it through the middle of the broken snaps). Then finally my husband bought a kit to replace snaps (from the hardware store) and started replacing them himself.
It always made me very nervous, but it seemed to work just fine.

Good luck. :)
Ann R

MATJESNIC

01-28-2007, 09:08 PM

We have not had this problem. But I am sure it can be fixed by the shoe repair person. Everything will be okay.

gerbo

01-29-2007, 02:14 AM

1. Does Shriners use Spinecor/Boston or do you just go when it is time for stapling or surgery? DON'T KNOW (I AM UK BASED) BUT SEEMS TO EARLY TO CONSIDER THAT
2. When you wear the Boston don't the muscles of the torso weaken completely from not using them for 22 hours a day? THAT SEEMS A LOGICAL CONCLUSION
3. Don't they suggest some kind of physical therapy to re-train and strengthen these muscles to support the spine in the shape that it should be growing?"THEY" DON'T, FUNNILY ENOUGH, OR MAYBE SOME DRS DO, OURS DIDN'T, ALL VERY ILLOGICAL. BUT WE MADE SURE SHE DID LOTS, SWIMMING 3X WEEK AND "TORSOROTATION" EXERCISES. LESS AN ISSUE NOW AS WITH SPINECOR SHE CAN USE MUSCLES PROPERLY
4. Should we change to a firmer mattress just so that it is easier to sleep in a brace? (her mattress is very soft right now)WE FOUND SOFTENING THE SURFACE OF MATRASS MADE NIGHTS MORE COMFORTABLE (FOAM MATTRASS TOPPER, FOLDED DUVET)
5. Can she still ride the bus or should I start transporting her myself?YES, RIDE BUS, RIDE BIKE, RIDE LIFE

TAKE CARE AND KEEP ASKING

Celia

01-29-2007, 06:38 AM

Ann/Melissa,

I'm going to phone Montreal today and see what they say. I'll also pay a visit to our friendly neighbourhood shoe repair man.

Gerbo/MBG,

If things don't seem quite right in paradise, there's an eye opening SRS presentation at the 41st annual meeting entitled "Spine Surgery at the Crossroads: does Economic Growth Threaten our Professionalism?" by Wenger, Dennis R. at 11:50am:

http://www.istreamplanet.com/srs/default.asp?np=media&conf=5&edi=17&searchterm=&disp=20&start=20

*****

MyBabyGirl

01-29-2007, 02:14 PM

Your answers were very helpful!

When we left her dr. office..we left in shock. So we hadn't ask ANY questios.

We have a pretty good list of them now!!!

MBG

gerbo

01-30-2007, 02:16 AM

mbg

to us the key-issue was, when still using hardbrace, how much correction was achieved. Only way of knowing is with in-brace xray compared to out of brace. All available evidence shows that needs to aim for about 50% correction (or more) to have reasoable chance of succes.

Do try to make your mind up with regards to manageability of hardbrace over the next 3 months or so. If you think you want to try spinecor, do not wait much longer as this one becomes less effective following longer hardbrace wear (due to general stiffening up of structures i assume)

gerbo

Celia

01-30-2007, 04:02 PM

Hey guys,

This has nothing to do with scoliosis but I have to share..... I'm so *very* proud of my son Dylan!!! I got a call from the school principal today and she asked me if I'm familiar with the C CAT test which is an acronym for Canadian Cognitive Abilities Test and it's administered to all the Grade 4's across Canada. She went on to say "any child that scores between 138 and 150 is considered "gifted" and your son Dylan scored 150!!!" Dylan is in the 99 percentile all across Canada!!!! I'm totally COMPLETELY floored! Does this mean I've got an Einstein on my hands?! :D :D What this means for his education is that he's now labelled "gifted" and they will give him a different curriculum in school. Once he starts high-school he will be offered the option of taking University courses! Hmmmm... I think a celebration party is in order!

******

arairdon

01-30-2007, 05:57 PM

Celia,

Congratulations! You must be very proud of your son. He must get his brains from his mom!! :) A celebration is definately in order.

Ann R.

MATJESNIC

01-30-2007, 06:54 PM

Celia,

That is wonderful news. Hopefully this will take your mind off of scoliosis for a while. Enjoy the celebration!

Celia

01-30-2007, 09:36 PM

It is taking my mind off scoliosis! It's funny everyone in the family is trying to take credit :D The grandparents are saying that the intelligence genes skipped a generation and Dylan got his intelligence from them and then of course hubby is trying to take all the credit since his specialty was physics in University and he did extremely well. I don't think intelligence is genetic though :confused:

We're taking Dylan to his favourite restaurant on the weekend for a special Sunday Brunch.

*****

MATJESNIC

01-31-2007, 07:13 AM

Not to start another heated discussion, but I do believe genetics plays a role in intelligence. Of course I believe in both nature/nurture. But I have looked at many families over the years, and when you have one or more highly intelligent Parents, the children are usually very intelligent, as well. Of course we know that Parenting styles are a huge influence on kids and how well they do in school. But I am talking about potential. Just like anything else. Some kids are born with a gift for singing or dancing. Some kids just have an amazing brain. Of course, there is something to be said for hard work. But some kids have to work harder than others. I have three kids and 2 have to work much harder than the 1 to achieve even less than what he achieves academically. Don't know why I am rambling. I will stop now.

Celia

02-05-2007, 12:31 PM

Hey gang,

The plan is to get a new brace next time we are in Montreal, which is next month :p I've already warned hubby of the impending expenditure and everything is a go! We're planning to spend a few days in Montreal just to make sure that the brace is okay and of course to enjoy the sights. Any good attractions besides the Biodome? What's a good eating place for kids besides McDonalds? There is one location that has a Mc Cafe next to McDonalds and they serve the most exquisite Mc Lattes :D :D

*

pat

02-05-2007, 02:56 PM

Hi Celia, Why are you getting a new brace? Is it because she's growing? I really never even thought about a new brace for us . . . . . Can't imagine . . . she's been in her brace about the same time as your daughter, I think (16 months). We're due back up there sometime in May or June.

When we were up there last October, it was beautiful weather, we took our bikes, and rode the bike trail along the St. Lawrence River, great trail, hoping to do that again in May/June. Pat

Celia

02-05-2007, 04:12 PM

Pat,

There are a few things....when we got the brace 16 months ago, Deirdre was about 43 inches and now she's 47 inches tall so in the back of my mind I feel she has outgrown the brace - the lace on the back of the pelvic base is not centred properly and skews off to the left. The thigh bands are in *very* bad shape with rips that I've patched with moleskin. The velcro on the bolero is worn and doesn't stick well. I spoke to Dr. Coillard today and she said that replacing the brace shouldn't be a problem and that she would tighten the elastic bands a little more and that would mean Deirdre might be uncomfortable for a couple of days and so it wouldn't be necessary to return 5 weeks later to adjust the bands.

Bike riding along the St. Lawrence sounds lovely :p Something tells me we'll still have snow in March.

*

MATJESNIC

02-05-2007, 05:33 PM

We are supposed to go in May, but it is the busiest time of year with dance recitals, dance competitions and choir concerts. If we have to, we will change it to April or June. Not that anyone asked me, but I thought I would chime in!!

christine2

02-05-2007, 05:52 PM

Hi Pat

It's been a while since I have spoken to you. My daughter is scheduled for her MRI at childrens during Feb. Vacation. I am a bit nervous about the sedation but we need to make sure there isn't anything else going on in her little spine. Her back looks great!! I was admiring her close to straight back during swim class last week. My mother has been sick so it feels as though I have been at doctors appointments every week (sometimes twice a week). When do you go to Montreal? Our appt is for March 1st, I am SOOO excited!! I hope the weather will be okay!

Celia
You must be very proud of your son. One of the ladys that works for me (her husband) is a physical therapist, He mentioned once that there is a link between intellegence and scoliosis. I am going to pursue the topic with him the next chance I get. I will let you know what I have learned.

My daughter is also very bright and creative.
Christine

Celia

02-06-2007, 07:24 AM

Christine,

We're going to be in Montreal the middle of March because that's our March Break Week for kids in school and I wanted to bring Dylan along so the doctors could check his back... he doesn't have scoliosis but I just want to make sure. Yes, I am very proud of him! :p

Good luck with the MRI, I'm sure everything will be Okay.

p.s. When I signed on to Yahoo this morning, I saw an ad for the new Eddie Murphy movie and it looks soooooo funny LOL!!!! :D

*

gallathea

02-07-2007, 12:53 PM

Hey everyone:

I was wondering how often have you had to get a new brace? How many inches of growth before the old one is no good? Our insurance company is only going to pay for a portion of the one we just got (and this only after going through an appeal), and I don't know if they'd cover another.

Thanks!
Caroline

christine2

02-07-2007, 03:27 PM

Celia

My daughter has a twin brother who goes to Montreal every time and Dr Rivard checks his back.

Gallathea

I assume you are asking about Spinecor. I think a couple replys back on one of the spinecor threads 2 parents were going to get or ask for a new brace. I believe their kid was 18 mos in brace (don't quote me on that) Our insurance payed the max for durable medical and has payed for all the O.V.s as well as x rays. Our insurance has been good to us. Keep plugging away with them there are more and more docs using spinecor and hopefully soon everyone will get the same coverage as with a ridgid brace.

Christine

gerbo

02-08-2007, 02:55 AM

Arctic conditions in Britain!!!
anybody some spare huskees and igloobuilding tips? (How to find a reliable builder?) How do you stop the fireplace melting through the ice? How to stop your tongue freezing to your coffeecup? any good fish and seal recipes?

thanks (BBBRRRRR)

Celia

02-08-2007, 04:09 AM

Gerbo,
How cold is it??? :D Sorry....no seal recipes here. Actually we're going through a deep freeze as well, yesterday with the wind chill it hit -29 degrees Celsius. Some theorists predict global warming will spark the next ice age.

Gallathea,
At our last visit, I was told as long as the brace fits and it's doing it's job then there is no need to replace it and I get the feeling that replacing the brace is actually discouraged but I'm doing it because Deirdre has grown 4 inches and the brace is in rough shape. It is a big expenditure but we have good insurance and coverage won't be a problem.

Christine,
My husband has scoliosis and he's brilliant! He specialized in Physics in University and he won a very prestigious scholarship based on his marks in University.

*

gerbo

02-08-2007, 04:38 AM

-6 and an inch or two of snow and the country is grinding to a halt. Motorways in chaos, trains sliding instead of riding, airports shut, My son's sec school is closed, whimps and spineless the british, i tell you!!

MATJESNIC

02-08-2007, 06:59 AM

Gerbo,

Stay warm!!! My kids want a snow day so badly. But so far, just snow showers.

Melissa

Celia

02-08-2007, 07:46 AM

Gerbo,

Sorry to hear this :( Do most people in England have indoor heating besides fireplaces????

*

gerbo

02-08-2007, 08:38 AM

melissa; what's the difference between snowshowers and a snow day

celia; usually our fireplaces tend to be indoor

Celia

02-08-2007, 10:39 AM

:D :D :D I mean a furnace~~~~ Ya know radiators and such!

*

MATJESNIC

02-08-2007, 11:20 AM

Gerbo,

I just meant that there has not been any heavy snow. We have only had a light dusting on the road, not enough to close down any schools. Barely enough for any sledding. The kids want to get at least a few inches. But it has certainly been very cold here. Every hour I have to take my puppy out on a leash. What a pain. She still doesn't get it, so I just have to keep guessing. It is similar to potty training a child in the beginning. I can't wait until she starts initiating.

Melissa

christine2

02-08-2007, 11:28 AM

Hi Melissa
I train all my pups with a bell. I works great. I hang a bell from my exit door knob and everytime I bring my pup out for potty time (not play time) I ring the bell with their nose or paw. I then make a big deal Do you have to go out? Good boy. then bring the pup to the designated potty area. You will be surprised how fast they get it!!

Christine

gerbo

02-08-2007, 11:38 AM

a furnace is a device used in a crematorium, I think you refer to what we call "central heating" which consists of a boiler (which heats the water) pipes and radiators. Most houses would have that indeed although some of the older properties still would have a either oil, gas or coal fuelled fireplace as a way of heating. In ourcase, we have central heating, but also a lovely woodburner in our livingroom, saves on the gas bill and a nice focal point. Please feel free to ask anything else you would like to know about our heating arrangements, and ofcourse if you want to know about our watersupply, well, that's a different story altogether.... :D

gerbo

02-08-2007, 11:39 AM

melissa, don't you just hate it how dogwee messes up the beautifull white snow..

christine2

02-08-2007, 11:42 AM

You want to see yellow snow I have 4 dogs, We need more snow to cover it!

gerbo

02-08-2007, 11:46 AM

dogs should wear nappies!!

christine2

02-08-2007, 11:50 AM

O K I'll bite what the heck is a nappie?

gerbo

02-08-2007, 11:52 AM

I remember from watching american films; you call them diapers (??) (i think)

Celia

02-08-2007, 11:56 AM

It's what that female astronaut wore as she drove 900 miles to confront her rival in that bitter love triangle. I guess she didn't want to make any pit stops along the way LOL!!! :cool: :D

*

christine2

02-08-2007, 12:02 PM

Nice one Celia!!

I assumed it was diapers by the content of the discussion, however it was worth the laugh playing dumb.

Imagine the problems we would have with landfills if everyones dog wore "nappies"

gerbo

02-08-2007, 12:12 PM

cotton ones? shake them, wash them, dry them and re-use them

Celia

02-08-2007, 12:18 PM

:eek: :eek: :eek:

Snoopy

02-08-2007, 01:29 PM

gerbo,

Call me crazy, but that's what I did even though I had two babies in diapers at the same time! Washed them, and hung them out on the clothes line to dry. I did it for my kids, but would not do it for a dog! Oh, and I'm sure the astronaut would not have time for that, after all she was on a kidnapping mission. :D

Melissa,

Don't worry about us not getting much snow yet. I have a feeling we'll be getting some snow next weekend. Tracy has to have 8 teeth out on the 16th, so with our luck, we'll get a major snow storm and she won't be able to play in it! My girls had a 2 hours delay yesterday, how about your kids?

Mary Lou

MATJESNIC

02-08-2007, 03:15 PM

We have had no delays because we have only had a dusting so far.

They actually make diapers for dogs for Parents who are at work all day.

Christine,

I totally read about that idea with the bell in some training articles. It sounds great. Jake just goes to the door and cries. Or he goes to the door and waits for someone to notice and then he stares really hard at that person.
Ironically, we are taking Roxy to the cardiologist on Valentine's Day. I don't know what I will do if the news isn't positive. I really can't deal with another big thing. They will do some tests and determine if the murmur is benign.
Christine,
I forget if your dogs are big. Are they indoor dogs? I have never met anyone who has more than 2 or 3 dogs. You must be a real dog lover. My friend is like that. She is involved in rescue for Springers and she has 3 dogs of her own.

Mary Lou,

My sister is very into the environment and she uses cloth diapers. She is the one who had a baby naturally, then adopted one from China, and now is pregnant!!

I think we got a little off topic today. But getting back to scoliosis, has anyone seen that jewelry commercial where the diamond necklace looks like a curved spine?

Celia

02-08-2007, 03:40 PM

A few days ago the subject for the "Top Ten" on David Letterman was "How do you know when an Astronaut is trying to kill you?" :D One of the questions was "Someone tries to poison your Tang" and then there was another "Houston we have a problem...." Sorry, this is very serious but while we're on the topic of ridiculous..... my MIL suggested that I carry along toilet paper :rolleyes: and wipe the dog's butt after each bowel movement to prevent the dog from wiping/rubbing herself on the floors. What's really scary about this is she wasn't kidding!

*

christine2

02-08-2007, 08:39 PM

Melissa
My dogs range from 100 lbs down to 20 lbs. And yes they are all indoor dogs.I know I am nuts!! I will not have that many again. I got them all B.C. (before children) So it is a bit of work and expense (3 are geriatric). 2 or 3 is managable. Let us know how her cardiologist appt. works out. I think whatever the outcome it is best to know.

Celia

I would do just about anything for my dogs except carry toilet paper!!

cherylplinder

02-09-2007, 01:17 AM

:D :D :D :D :D

AILEA

02-09-2007, 04:50 AM

Hey, Cheryl!!!!
It seems that you´re trying "to come back", I hope you are going to resolve your technical hitch! I´ve been missing you :o !!
Hugs

gerbo

02-09-2007, 08:28 AM

older son of nearly 15 just left on schooltrip to Austria (small mountanous country in Europe (continent north of africa)), well known as backdrop for the film the "Sound of music" (the hills are alive etc...), where he will be snowboarding for a whole week. First time he is away from us for such a long time. It'll be quiet in the house... :( :( :(

cherylplinder

02-16-2007, 10:53 PM

Hi all!!!
We finally have a working computer again! I've missed talking to you!

Gerbo,
How was your son's trip?

Celia,
When is your next appointment?

MATJESNIC

02-17-2007, 05:55 AM

Welcome Back, Cheryl

Celia

02-17-2007, 10:44 AM

Hi Cheryl,

It's so great to hear from you again!!!! How's your mom? How are you? It's sooo great that Rachel's curve is holding and the message is "clear sailing ahead" from Dr. Rivard!!!! :p YEAH!!!!!

We're in Montreal the week of March 12. I probably won't have computer access that week unless I bring along the laptop which I'll probably do anyway :rolleyes:

*

christine2

02-23-2007, 04:32 PM

Hi everyone

I need to vent again. My daughter had an MRI on Tuesday. I have been on pins and needles waiting for results, I wait the 3 days and call and the doctor is at a conference till Tuesday and noone else can give me results!!!!

I am also anxious because our next Montreal appt is this coming Thurs!!!

Do you all want a laugh to help you appreciate you doctors. My mother has been sick she has seen a ton of docs the last 3 months. (of course I bring her to all of them) We get an MRI of her brain done. The receptionist at her regular care doctors office calls me on Monday to give me results. She babbles off a bunch of s****. I say can you have the doctor call me to explain what all that means and she says "I am sorry we have a no call back policy" "You need to come in for an office visit" What the H***. I can not switch he dr because she has been going there for some 20 years and is comfortable.

Thank you for listening
Christine

Celia

02-23-2007, 09:57 PM

Christine,

Waiting is the hardest part! The odds are in your favour that they won't find anything, I think it's something like 20% probability that there ~is~ a problem. Your appointment in Montreal is next week????? Time does fly....

What's wrong with your mom?

*

MATJESNIC

02-23-2007, 10:14 PM

Christine,

My thoughts and prayers are with you as you wait for the results. Most likely everything will be fine. I am sorry to hear that you are going through a lot with your Mom, as well.

christine2

02-24-2007, 01:40 PM

Thank you, I really hope that all is normal in her MRI!! Our appt in Montreal is next week March 1st. How exciting!! My daughters back looks soooo good, I hope Dr. Rivard says the same.

Celia
My mother has dementia. I was hoping her head MRI would give us a clue as to what was causing it but I don't know what the results mean yet because the doctor has a no call back policy!!! Frustrating

Christine

desheah

02-25-2007, 02:32 PM

christine,

good luck this week with both your results for your daughter's mri and the appt. in montreal. i'll be expecting an update! ;)

my best,
deshea

MATJESNIC

02-25-2007, 02:59 PM

Lots of luck, Christine. I will be thinking of you.

That's great that her back looks good to you. Nicole just bought two new dresses for two parties she is going to. She has such a beautiful figure, long and lean with long legs. But her back is exposed and of course I can see the shoulder blade sticking out. And if you look really carefully, one hip sticks out more than another. So I can't say her back looks great. I don't know if it's the same, worse, or what. But I do see her scoliosis. With that being said, I still would like to avoid surgery. Because even with surgery, her back will not look like it should. Every time we go shopping for dresses, it hits me all over again.

Don't mean to sound so negative. I am extremely thankful for all of my blessings. Nicole being one of them.

christine2

02-26-2007, 05:51 AM

Melissa

It is very hard not to feel the negative emotions. I also see my daughters curve she is soo skinny. Her back does look better.Because of spinecor her muscles are strong.

The reason we chose spinecor and refused hard bracing is so that if she needs surgery her body and mind will be strong for a quick recovery. The thought of muscle atrophy in it self scared me.

We are doing the best for our daughters so we must look at that.
Christine

MATJESNIC

02-26-2007, 07:56 AM

Christine,

I agree with you about keeping their backs strong. I feel so good when I think about their healthy backs because of Spinecor. I think I told you that when she was diagnosed, we were mostly upset about her having to wear the hard brace for 4 years than about anything else.

For some reason, I keep obsessing about risser and peak height velocity. I am trying to have a crystal ball to try to figure out what is going to happen. I can't decide which is more important, a high risser or the fact that major growth spurt is behind her and she has had her period for almost a year.

Anyone know any answers to this?

mariaf

02-26-2007, 08:57 AM

Melissa,

I'm no doctor, but it would make sense to me that the fact that one is finished growing would be key....it's what we hear all the time.

Also, I know what you mean when you say that when you go dress shopping it hits you all over again. There are certain things that will always be "reminders" of the fact that our kids have scoliosis. But I, like you, am very grateful that they are otherwise healthy and happy. We do have many blessings :)

MATJESNIC

02-26-2007, 11:38 AM

It still doesn't make sense that people are saying a 0 means a lot of growth left, but Dr. Rivard confirmed it doesn't necessarily mean that.

Christine,

Could you please ask Dr. Rivard which is more important: a high risser score or physical maturity? If you think of it.

Celia

02-26-2007, 11:49 AM

Melissa,

I realize Nicole is pretty close to 40 and inbrace correction is 32 ??? We all know that with time the probability of future progression is likely, I wonder if continued but not necessarily full time wear of the Spinecor would help in maintaining the degree of curvature she has now??? Do you think she would be receptive to that idea? It might work :)

Snoopy

02-26-2007, 02:48 PM

I wish there was a set rule as far as the Risser goes, but each child is different.

When Jamie was diagnosed at age 12 (Aug. 2003) she was a Risser 0. She had already had her period for 4 months at that point. Oct. 2003, 144 cm. tall and 36* Scoliosis; Feb. 2004, Risser 0 and had her period for about 10 months, curve still about 36*; July, 2004, Scoliosis 42*, bone age is 14 1/2 although she was only 13 y.o.; Aug. 2004, Risser 0, Scoliosis 43*, "nearing skeletal maturity"; Dec. 7,2004, surgery, Scoliosis 46* and still progressing; Dec. 22, 2004, post-op report says she gained 1.7 cm.; Oct. 2006, 146 cm.

So, what does all that mean? I really don't know. Jamie progressed very quickly from a Risser 0 to sketally mature and never really grew in that time frame. She was prescribed a Milwaukee brace and then a Boston brace. She never wore either one enough to know if it would have slowed progression. Jamie is a perfect example of how quickly things can change with Scoli and Risser numbers. And although some say that a Risser 0 means a lot of growth, it just wasn't true for Jamie.

Mary Lou

MATJESNIC

02-26-2007, 03:24 PM

I'm sorry, Celia, I don't understand the question. What do you mean? She may be in the brace until she is 16, according to Dr. Rivard. Is that what you meant?

Mary Lou,

Thanks again for those details that you have probably told me so many times. You are right. People keep saying that risser 0 means a lot of growth. But Dr. Rivard said you could be done growing and be a risser 0. This seems like a big misconception. I know that Nicole has always gotten worse with growth. So if she is done growing, she could possiblly stay where she is. I know I will know these answers soon enough. But the waiting is so frustrating. Each child is different. That is for sure.

Celia

02-26-2007, 03:48 PM

I'm sorry, Celia, I don't understand the question. What do you mean? She may be in the brace until she is 16, according to Dr. Rivard. Is that what you meant?

I don't know what I was thinking...my brain is mush right now. :p I'm getting that habitual sinking feeling in my stomach - a clinic appointment must be around the corner. Where is Gerbo????

Christine,

Good luck on Thursday!!!!! What is going on with the MRI?????

*

MATJESNIC

02-26-2007, 06:35 PM

Hello,

Welcome to the forum. Is this your first time posting? That is so nice of you to offer that. No, it is not inappropriate. I agree that they are very expensive. Too bad my daughter wears a large!!!

We are in the process of having a tailor put snaps in panties so that we can wear them with tank undershirts. It will be so much easier to wash and less expensive than the bodysuits. The tailor already made one and it turned out great!!! I bought the snaps at Walmart and they came already attached to a piece of material that gets sewed in. The tailor is charging me $10/pair so that makes each pair cost $15. Put that together with a tank undershirt and you have the makings of a nice alternative to a body suit.

pat

02-26-2007, 08:10 PM

[QUOTE=MATJESNIC

so that we can wear them with tank undershirts. [/QUOTE]
Hi Melissa, Nicole's able to get away with wearing just a tank undershirt??, my daughter has to have the coverage on top also, for the shoulder straps. Hmm, maybe I should just get her used to it . . it'll be cooler for the summer. Thanks for the tip!!

Bizzlebr, thanks for the open offer, my daughter's also a "large." pat

gerbo

02-27-2007, 04:00 AM

please, spare a thought for my mum, who tomorrow will undergo a double (cardiac) bypass. She should be ok, but you cannot help being nervous about it. Currently i am in Holland to support my dad in the coming days.

gerbo

MATJESNIC

02-27-2007, 06:16 AM

Gerbo,

My thoughts and prayers are with you and your family. Keep us posted.

Pat,

I mean the boys tank which has a thick band on the arms. She said it wasn't as good as the capped sleeve, but good enough. You can have her wear any kind of boy's t-shirt with any kind of sleeve.

I just got tired of the body suits ripping from all the wash and wear. They take forever to hang dry. I am having her repair the ripped ones. I just thought it would be fun to wear something different for a change.

Monday is Nicole's 18 mont mark of wearing her Spinecor. I am so proud of her when I think of her dedication, as I'm sure you all are with your kids.

Celia

02-27-2007, 07:31 AM

Ahhh Gerbo, so sorry to hear this! I'll be thinking of your mum tomorrow. One more thing, did you do a thorough check and interview the anesthesiologist as well????

*******

christine2

02-27-2007, 07:35 AM

Gerbo

My thoughts and prayers are with you!!

Bizzleber

My daughter is an xs those bodysuits are expensive!! That is very genorous I wil PM you

Thank you
Christine

mariaf

02-27-2007, 09:12 AM

Gerbo,

My dad had triple cardiac bypass surgery in 2000 (right around the time David was diagnosed - OUCH!) - but he is doing fine now. You and your mother will be in my thoughts and prayers. Please keep us posted.

christine2

02-27-2007, 05:43 PM

Great news - MRI IS NORMAL!! I will be back Thurs., MONTREAL BOUND!!!!!

Christine

MATJESNIC

02-27-2007, 06:32 PM

Christine,

I AM SO HAPPY FOR YOU!!! Have a wonderful, successful trip!!

cherylplinder

03-02-2007, 09:15 AM

Gerbo,
How is your mom?
I hope all is well.
Cheryl

gerbo

03-03-2007, 05:35 AM

thank you all for thoughts and prayers, which clearly have helped. She's done well, as far as we know, although she had to cope with one day postponement when an emergency had to be fitted in. (after she had made a fuss about being given MALE operation trousers!! The thought!)

She had only a single bypass which was done telescopically, i.e. without opening the thorax, so recovery should be quick.

I as ked the surgeon before the operation whether he had been to america to learn this approach (where it originated) but no, he said; just watched the video and tried it out. Clever people!

best wishes to you all, my friendly friends

gerbo

MATJESNIC

03-03-2007, 07:27 AM

Gerbo,

I am so happy that everything is turning out well. Thoughts and prayers are with you today all the way from the United States.

christine2

03-03-2007, 07:34 AM

Gerbo

Thank goodness all went well. I am very happy for you.

Christine

Celia

03-12-2007, 08:44 AM

Hey gang ,

I'll be missing in action until next Monday. So sorry I won't be around to see what mischief you're all getting yourselves into.... Hee hee :D

******

gerbo

03-12-2007, 10:43 AM

what happened to laptop? Internetcafe?

.....hope and trust you'll have a good time.

gerbo

Celia

03-12-2007, 06:50 PM

I can't bring the laptop along. I promised the kids a fun filled week but I will try to sneak in a update from an internet cafe. :p

******

Celia

03-14-2007, 02:22 PM

Bonjour de la belle province! :D

I have to make this a quickie update as my two kids are giving me the dirtiest looks and are threatening to leave me. Deirdre was fitted with a new brace because I couldn`t bear to see her in the old one.... her curve is holding at "1" degree. I was also able to get the latest x-ray on disc so I will post when I get back home on Monday. Drs Rivard and Coillard were wonderful as usual! Hope everyone is well.

desheah

03-14-2007, 03:43 PM

celia,

what fabulous news! i can't wait to see the straight x-ray. have a wonderful time in montreal. i look forward to "talking" more when you get home.

deshea

christine2

03-14-2007, 04:57 PM

Celia

AWESOME!!!!!!!!

AILEA

03-15-2007, 04:24 AM

Congrats, Celia!
It must be comforting to see your daughter´s spine straight!

gerbo

03-15-2007, 04:36 AM

so pleased for you (but not surprised) :D :D :D

MATJESNIC

03-15-2007, 06:52 AM

Celia,

I'm very happy for you and Deirdre.

pat

03-15-2007, 04:59 PM

That's wonderful news Celia, thanks!
p

cherylplinder

03-15-2007, 09:13 PM

Thrilled once again! Can't beat that Spinecor brace for miracle cures!

I know it doesn't completely cure every patient, but is there another brace out there that offers even a chance of a cure?

I'm still sold, even if Rachel doesn't hold.

If I ever drive to Montreal again, I am going to drop in on you on my way through or make a detour and come see you!

gerbo

03-16-2007, 05:41 AM

Wearing a schooluniform is the norm in the UK, so the occasional "wear what you want" day is quite special for our children. Unfortunately "wear what you really want" is not always compatible with a brace, even the spinecor. So very occasionally, we allow her a brace free day, like today. Such a difference it makes in how she feels and her confidence. And she did look gorgeous in her thin, fashionable , lowish cut summery dress. Tonight she is dancing in her schools dance show, so all in all, quite a taste of freedom.

In the mean time, us parents, try not to worry that years of hard work will not be reversed.......

mariaf

03-16-2007, 06:02 AM

In the mean time, us parents, try not to worry that years of hard work will not be reversed.......

Gerbo,

Even or former ortho, who was pretty strict about brace wear, told us once that an "occasional" treat (of less brace time) every now and then would not mean much in the grand scheme of things. Think about how many hours per year your daughter wears her brace - a special day once in a while is not likely to "reverse" anything, so please try not to worry :)

MATJESNIC

03-16-2007, 08:08 AM

Gerbo,

Not sure if you know what a Bat Mitzvah is, but around here Jewish teens have huge catered parties with D.J.'s and everything. Nicole has been to only a few this year. But as fate would have it, she has 3 this weekend!!! She will be out of her brace and wearing a beautiful backless dress from 9 a.m. until midnight tomorrow. Yes, back to back parties. Then on Sunday, she will go to her third party in yet another backless dress from noon until 5. I will pack her some Advil because I know she will say her back was hurting with all that dancing and no brace. But there is no way in the world she could wear her Spinecor under any fashionable dress.

You know that when there is no special occasion she wears her brace 22 hours a day with no complaints.

On top of all that, we are now in the middle of an ice, snow storm. Some areas are hit harder than others. It is a shame for all the families hosting these parties and having so many guests traveling from all over.

Changing the subject a little, Nicole has never learned to roller skate. She always had a fear of falling and just never wanted to learn. She never went to the occassional skating parties from school and thankfully most of her friends never had skating parties. She can swim and ride a bike. Both activities that are important. If she never learns to skate, I don't think it will affect her life.

In gym they are starting a skating unit with everyone skating. She told me she doesn't want to do it. At this point, she is very protective of her back and spine and she also wears a shoe life because of uneven pelvis. So I wrote a note and explained her scoliosis condition and the fact that she was uncomfortable. So she will be allowed to do something else along with a couple of other friends who have other health issues. I have to say it was probably the first time she felt good about being able to use the "scoliosis card" to get out of something. It was legit. after all.