Has anyone been to the chiari institute?

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Has anyone been to the chiari institute?

Postby kj's angels » Wed Aug 15, 2007 8:40 pm

Hi,
During my research I've found the chiari institute and wondered if anyone had gone this route. I made a phone call and they didn't seem very responsive. I really need some guidance for my 8 year old daughter.
Thanks
Katherine
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chiari institute

Postby chiarimom » Wed Aug 15, 2007 11:34 pm

Our youngest daughter began with Dr. Milhorat (from the Chiari institute) when she was just 6 years old and Dr. M was in Brooklyn at another facility. Since continues with him in LI. We are very pleased with the care that she has received.

The one bit of advice that I give to other parents/patients is that just as one doctor is good for us it might not be good for you.

If I can answer any particular questions about the chiari institute you can also email me privately at chiarimom@optonline.net
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drs

Postby razzle51 » Thu Aug 16, 2007 7:03 am

HELLO , where do you live ? There is Dr. Frim that is excellant with children , also Dr. Menenez .
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby the 4ks » Thu Aug 16, 2007 7:34 am

The Chiari Institute is very good with adults, but I don't know about much about the children who go there. It is an excellent place to go!
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Postby cash71 » Thu Aug 16, 2007 12:32 pm

Unfortunately you can't judge the Chiari institute by their office staff. They are notoriously difficult to get appointments with and paperwork thru. They seem to be just totally overwhelmed and busy. But having just gone there (as an adult) it was all worth it. They are just so knowledgable and Dr. Bolognese is so approachable and helpful. I would not let the office staff scare you off. I am so grateful that I went.

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby pearland1 » Thu Aug 16, 2007 4:35 pm

We took our 3 year old daughter to TCI as well. (She was diagnosed at 2 1/2)
I would agree that the front desk and slight disorganization of paperwork was a bit of a scare to me as well. I'd expect them to be more organized than that.
I'd strongly advise you to see Drs. B or Milhorat though, as they are world-wide experts. I can tell you that I have never felt as informed, comforted, and "taken care" of (as doctors all should do!) as I did after we saw Dr. Bolognese.
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TCI

Postby Sara » Sun Aug 26, 2007 6:07 pm

I don't know much about TCI, but my twin daughters have been through dozens of hospital stays. A good children's hospital makes a huge difference for the whole family and child and the amount of trauma that is suffered from the whole ordeal. If your child is a relatively straightforward case, there are a lot of very good pediatric nsg at well established children's hospitals that would be worth looking into.
To name a few who subspecialize in Chiari/sm:
Dr David Frim
Dr Bermans Iskandar
Dr. Arnold Menezes
Dr Jerry Oakes

and so many more.

Sara
Holly's mom
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Re: Has anyone been to the chiari institute?

Postby kosterkids » Sun Oct 21, 2007 8:45 pm

kj's angels wrote:Hi,
During my research I've found the chiari institute and wondered if anyone had gone this route. I made a phone call and they didn't seem very responsive. I really need some guidance for my 8 year old daughter.
Thanks
Katherine


I HAVE A ALMOST THREE YR OLD WITH CHIARI MALFORMATION SHE ALSO HAS WARFARIN SYNDROME AND HYDROSIPHALUS WITH A SHUNT. SHE HAD TO HAVE DECOMPRESION SURGERY IN JAN AND I ASKED HER NEOROSURGION ABOUT THE CHIARI INSTITUTE HE SAID THEY ARE NUTS THERE I GUESS CAUSE THEY TAKE A RISK WITH THE SURGERIES THEY DO, BUT IF MY DAUGHTER DID NOT HAVE THIS SURGERY THEN SHE WOULD OF BEEN PARILIZED IN TWO MONTHS.. I AM GREATFUL FOR HER DOC HE HAS DONE ALL 8 OF HER SURGERIES AND TAKES SUCH GOOD CARE OF HER..I HOPE THIS HELPS A LITTLE
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