spinecor

[emarismom]

Olivia's mom,

I know that you said that the nuerologist did do MRI's on your daughter. Did they do brain and full spine? Or did they do just brain? You may want to get copies of the MRI films or a cd with the images and send them to another
nuerologist to take a look. It really never hurts to get another opinion. If there is an underlying cause to the scoliosis, and the headaches, it needs to be addressed. My daughter did have other issues that once dealt with did stabilize her scoliosis. I now have her in the Spinecor brace because if she does start to progress in the future, I don't want to look back and say, "If only I would have..."

[Olivia'smother]

Mri

Thank you for your concern. She did have a brain MRI which several doctors read (including the neurologist) and the full spinal MRI which only the ortho looked at. It wouldn't be a bad idea to have someone else look at both. I have wondered since things have progressed, if the conditions are related. Our family chiropracter thinks they may be, but has no concrete suggestions for treatment. I respect the fact that if she doesn't clearly know what she is doing, she will say so. She has suggested some exercises like Yoga and swimming as well as inversion treatment and massage which I believe are not going to hurt. I appreciate the advice and plan on following through. Thank you.
Amy

[mariaf]

Amy,

Welcome!

Just to throw another option out there - your daughter sounds like she MIGHT be a candidate for the vertebral stapling. If you would like more information, please feel free to e-mail me. These procedures have been done, for the most part, at Shriners Hospital in Philadelphia.

Best of luck to you,

[emarismom]

Olivia's mom,

I would caution against letting the chiropractor do any types of spinal manipulation until you know what exactly is going on. I would also suggest
that you find specialists (ie. nuerosurgeons, not necessarily nuerologists) to read the films. If you can send the films to the Chiari Institute in New York, hopefully they will be able to conclusively rule out Chiari and tethered cord. They are supposed to be the best.

[Olivia'smother]

chiari

I must admit that I read some of your posts about chiari, but didn't realize what it was. I just looked it up and you are right - with my daughter's migraines it could be a possibility. Thank you for alerting me to this. I will definitely look into it. I would have hoped with both the MRI of the head and spine that it would have been detected if it is chiari or thethered spine, but am realistic enough to know that these things are not always caught. Plus, I live in a remote area of the country with limited access to quality healthcare so it would not be unheard of for my local doctors to miss something. Thank you for the tip on finding a neurosurgeon as opposed to a neurologist as well - I would not have known where to start.

My chiropracter is a friend of the family and hasn't been doing ajustments on Olivia, but has been giving us some information on how to strengthen the muscles in her back and showing me some simple massage techniques. I know doing anything is a risk, but there is so much conflicting information out there that there is no clear cut right or wrong. I don't feel 100% confident in any decision I make, but I want her body to stay strong and to take a proactive approach. I think that was part of my problem with our former ortho - I felt like we were being told there little hope and to just "let it happen" which I find to be quite depressing for both myself and my daughter.

Thank you again for your concern and good luck with your daughter's continued success.
Amy

[Celia]

I think that was part of my problem with our former ortho - I felt like we were being told there little hope and to just "let it happen" which I find to be quite depressing for both myself and my daughter.

I certainly don't want to sound like a cynic because I *really* do believe in the goodness of mankind and I see it everyday all around me BUT when surgeon fees for spinal fusion in the U.S. approaches $50,000 - $70,000 for each spinal fusion performed it's no wonder most doctors in the U.S. are giving parents the impression of "no hope" and to "watch and wait" because it's in their financial interest to perform these surgeries. Patients have been reduced to commodities as representatives from multinational corporations are often times in the O/R along side doctors as surgeries are about to take place.

[gerbo]

you are too cynical I think, Celia, I am sure there are enough too late diagnosed cases going around to keep them busy and their children fed.

[Celia]

It's pure greed! People can never have enough money - it's a non satiable need. Regardless of how much money is made, people will always find creative, imaginative ways of spending it. So instead of buying a $70. pair of shoes they'll buy an $800. pair of shoes and so on....

[gerbo]

It's pure greed! People can never have enough money - it's a non satiable need

i'd put it down to ignorance and misinformation laced with some incompetence,

[gerbo]

amy, if you are interested in muscle exercises; have a look at this article http://www.medxonline.com/downloads/...nscoliosis.pdf , or alternativelly search for the thread on torso rotation on this site for some additional info (useful stuff in between the usual banter)

it is an approach we have added to bracing treatment for the last 2 years or so.

gerbo

[Olivia'smother]

Thanks Gerbo. I am definitely interested in keeping Olivia as active and strong as possible. Not only for her physical well-being, but for her emotional well-being. It helps her feel like less of a "victim" and more in control of her health. Amy

[emarismom]

Celia,

I'm with you on the doctors. There is NO reason why they all say to take the wait and see approach. I have waited two and a half years for Emily's
back to hopefully get better after the decompression. Thankfully it stabilized, but if there is a possibility of using the Spinecor (or anything else)
to possibly improve the curve, then why not give the patients and their parents the option of trying something. Oops I forgot, if there is no progression, there is no surgery down the road!! I wonder if it were their children if they would be waiting so long.

Olivia's mom,

Many, many times Chiari is not diagnosed until a person has been treated for every other possible cause of headaches. I was lucky that Emily was diagnosed immediately after finding the scoliosis, she had no symptoms of anything else. Unfortunately, most people are not quickly diagnosed. A great website to find information is www.asap.org

[Olivia'smother]

Thanks for the guidance. I will definitely follow through. I hope that it is nothing, but if it is this information could be a lifesaver.

[cherylplinder]

Ten days til our appt and I am a nervous wreck. I just keep reminding myself that if Rachel's curve progresses, it is still in God's hands. But I can't help being on pins and needles. I say before every visit that I'm not sure how she looks. When I look at her straight on, her shoulders and breasts are even. Her rotation is still about 5 to 7 in brace. I know that is good. Sometimes when she walks, she looks off to me, but I bet it is my imagination. I do this every time. I flake out. I hope it remains just my flakiness.

[mariaf]

Cheryl,

Good luck!!

We all know how you feel. A friend of mine (another scoli mom) even has a name for it "the dreaded x-ray day feeling" -

At least you know you're not alone.