The Chiari Institute in NY

[hdavids]

Hi everyone

I am sending my medical reports to the US for a second opinion, I contacted The Chiari Institute in NY. I saw that they are specialized in Syrinx and I will get a phone consult if necessary .

Do any of you have any experience with that institute ?

oh yes... I finally got an answer from my dr after a long wait.. No Chiari there :), my cerebellar tonsill is 1 mm down and my Syrinx has grown from T6-T9 to T6-T10. my dr says that there is nothing to worry about and my headaches are just migraines (I really am having a hard time believing that migraines last for that long!) and my syrinx is not responsible for any of the symptoms I am having.. ok that's good but what is then causing them!!! he´s not even trying to find out just drowning me in pain meds...  I am so frustrated with my dr that I am seeking a second opinion and also optimistic that the Chiari Institute can help me :)

Hope you all have a wonderful day

Hdav
  

[jen0959]

Can anyone else comment about the chiari institute in new york?  i too am thinking about going that route.  also, of the centers, does anyone know if one is better then the other?  wisconsin, colorado or new york?

[hdavids]

Thank you Selma :)

It is good to hear that about TCI. I am sending it out tomorrow so fingers crossed that they can help :)

I really don't think the dr here know anything about syrinx or chiari or at least that is the impression I am getting. I will get a new NL later this month so hopefully he will be better then the last dr or more willing to learn if that will be the case.

I will definitely  PM you if I have any questions, thanx for the offer :)

Hope you have a good day

Hdav

[selmaS]

Hi...I went to The Chiari Institute for my surgery...if u have specific questions u can PM me...I will say, I was very pleased with my dr and my surgical  outcome.

I do have other issues that I do need to have addressed, but I am more than happy with my choice to go to TCI.

On another note, ur dr does not seem to recognize chiari 0 which is chiari with a herniation of less then 5mm, chiari by definition is not the herniation, but the malformation of the skull....the herniation and overcrowding is a result of the malformation....so u can have chiari with 1mm herniation and the symptoms u have mentioned.

TCI will let u know if u r a surgical candidate or not.....many times they can tell u with out the need to travel up there, and other times u may have to go to find out for sure.

U will need a good dr at home to go to for tests and follow ups....and in the event u r not a surgical candidate now, u will need someone to monitor u...so try to find someone even a  good PCP that is willing to learn ans help u with chiari and syringomyelia.

also a good PM dr and PT is good to find b4 hand as well......

Good luck and do PM me and feel free to read my journal on my surgical experience in my profile.

"selma"