Chiari Institute?

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Chiari Institute?

Postby momof3indenver » Wed Oct 07, 2009 1:01 pm

Can anyone offer me any feedback/input on the Chiari Institute? I am thinking of taking my son there. He has a very complicated history and they seem to have the most comprehensive evaluations etc..He is still struggling with symptoms, headaches with vomitting etc...
Thanks
Melissa
momof3indenver
 
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Re: Chiari Institute?

Postby jupes » Wed Oct 07, 2009 6:58 pm

TCI has helped many and there are several TCI patients on the adult forum. I know they treat kids but I have not heard from many parents on this particular board recently that have taken their kids to TCI. Thought you should be aware of there recent legal troubles-check this post out on the adult board. "TCI findings and lawsuits" by Bob ยป Thu Sep 24, 2009 8:07 am . There have been many other posts about TCI in the past on the adult board you could check out too!

Good luck!
Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: Chiari Institute?

Postby momof3indenver » Wed Oct 07, 2009 9:58 pm

Thanks for the info. I couldnt find the post on the lawsuits...I will look in to it. Are these recent? Are people still going there?? Not sure where to turn? Maybe Dr. Ellenbogen??
momof3indenver
 
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Re: Chiari Institute?

Postby jupes » Thu Oct 08, 2009 2:30 pm

Hi Mellissa!

I still think many are happy with TCI but this has probably caused some to think twice about going there. Dr Milhorat has retired too. If you go to the Chiari Institute website this issue is addressed on there. Here are the links to the newspaper articles about TCI.

TCI findings and lawsuits

sept 22:
'Systemic breakdown' at North Shore hospital led to woman's abandonment in operating room: report
http://www.nydailynews.com/ny_local/200 ... _surg.html

sept 23:
It is brain surgery: Put Long Island hospital neurosurgeons on the examining table
http://www.nydailynews.com/opinions/200 ... rgery.html

sept 24:
Woman left on operating table is suing North Shore University ...
http://www.nydailynews.com/ny_local/200 ... _nosh.html

Dr Ellenbogen is patient recommended too. There may be some past posts on here or on the adult forum talking about personal experiences with him.

I have recently heard parents praise Dr Keating (Washington DC). He spoke at the ASAP conference this summer and also has an educational video in the ASAP library discussing CM/SM in children. I heard him speak and was also impressed.

Pray you find the best care!
(((HUGS)))
Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
jupes
 
Posts: 262
Joined: Fri Jan 09, 2009 2:37 am

Re: Chiari Institute?

Postby memom » Thu Oct 08, 2009 7:21 pm

Hi -

I just thought I would let you know how pleased we are with Dr. Keating in Washington D.C. He is an excellent NS with very good reputation and bedside manner. We were able to work with him long distance via e-mail to get initial review of our 7 year old daughters' MRI and records. He is considered conservative when it comes to surgery. However, our daughter did require surgery and we do not hesitate for a minute in recommending him as a NS. Not only did he take care of our daughter, he adopted our entire family. Children's National in D.C. was on the very top of their game also. We wanted to be in a children's only hospital. They know how to treat kids and parents too! Every person we came in contact with knew all about CM and SM - that was so refreshing! Good luck, we will keep you in our prayers. Let us know how things go.

MeMom
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: Chiari Institute?

Postby momof3indenver » Thu Oct 08, 2009 7:52 pm

Thanks so much for the replies. I am going to try and contact some of these drs. I have gotten a second opinion via email from Dr. Frim before.
I will also try and contact Dr. Keating and Menezes.
Melissa
momof3indenver
 
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Re: Chiari Institute?

Postby jswack » Tue Oct 13, 2009 3:56 pm

Dr. Frim is my doctor; he is absolutely wonderful.
Jeanne in Madison
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Re: Chiari Institute?

Postby momof3indenver » Tue Oct 13, 2009 7:09 pm

I have emailed Dr. Frim but I have not heard back yet. Anyone know how long it takes?
Thanks
momof3indenver
 
Posts: 33
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Re: Chiari Institute?

Postby lcolangelo » Thu Oct 15, 2009 11:35 am

I do not have any personal experiance with it-- but I have heard some not so good stories. My children are treated with Dr. Menezes in Iowa--he is one of the very best! I met a mom last time we were there, and her 2 children were treated at the Chiair Institute-- I know she would not reccomend it == her children have had many problems as a result. Hop this helps!
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