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We took the trip last weekend. We flew into Laguardia and called Ollie's cab service for a ride to the hotel. (We used Ollie's the entire time we were in NY and they were great!) We stayed at the Adria Hotel and Conference Center. I have now learned that there is a "Variety House" that patients of the Chiari Institute can stay at for around 25 dollars a night instead of the 119.00 a night we paid at the Adria. Whch was fine, and they have a big breakfast buffet every morning, and wonderful staff!!

Monday we went to "All County MRI" to have testing done. I didn't know it wasn't near the Chiari institute. The reason I picked Adria is beacuse it was about 3 miles from TCI. Anyway, I was stressing about the cost of the cab from the hotel to "All County" but my online buddies on

http://groups.yahoo.com/group/chiari/  let me kow that if I called "All County MRI" and let them know that we are from out of state, they would provide transportation to and from the center for free. And thank goodness they did or it would have been over 100 bucks each way. The folks at All County were awesome! It couldn't have gone better! LOTS of testing. 1 1/2 hours in the MRI machine! (they had to sedate my autistic son, but that went well.) When it was all done (several hours later....long day, but we expected that...) they handed us 2 manilla envelopes with printed images about an inch thick! Just a ton of pictures! They also gave us 3 CD ROMS with all our pictures and information on them! I CANNOT THANK THEM ENOUGH!! THEY WERE GREAT!!

I immediately felt better just having all of those pictures. Not only would I get TCI's opinion the next day, but I could take these images home and get other doc's opinions, and also have a baseline history to refer to if anything happened in the future. They called a cab and we went back to the hotel.

The next morning we called Ollie's to take us to TCI.

(Yes, we punked out and took cabs the entire time we were there. We were going to ride the bus or take the train, but

#1, I couldn't understand the bus schedules even when explained to me-    (yes, I'm an idiot. It's o.k. They're not hiding it from me, I know and I'm o.k. with it.)

#2, We didn't want the hassle of having to endure waiting through all the stops the bus makes or any transfers we'd have to make - another opportunity for error, and the bus and train take  MUCH longer than a cab...

#3 Queens - which is where we were, was in what seemed to be a big swine flu outbreak. So we took a cab to stay away from crowds.

So Ollie's took us to TCI. They had some snack breakfast out too. We first saw Dr. Shelat, and he let me video as he went through our pictures. I will try to get this video uploaded soon.

O.K. I just watched the videos and though they were good, they need to be edited. I tried not to make anyone feel uncomfortable so I kept the camera pointed at the table on whatever image they were showing me and unfortunately my camera is so good you can read our full names and information right off the pages and I am uncomfortable with having that posted to the internet. So I will have to edit or just pick out pieces or stills of anything I think people might be interested in seeing.

I do have to say that in watching these videos, I guess I talk more when I am nervous or anxious. I sometimes wanted me to shush and just let the docs talk. And, yes, I got a little starstruck when I met Dr. Bolognese. I was told that he may not have been able to be there that week, and then during the course of the day we were told he was there and we would be seeing him. It wasn't until 6:30-7 pm when we saw him, but I was just happy to meet him and hear what he had to say.

PRELIMINARY RESULTS

My son does not have chiari or related disorder.

My son and I both have very slight scoliosis of spine.

My son has a ventricular......something, I'll have to look it up. Some ventricles in his brain a little bigger than they should be....(?)

I have a degenerative disc disease. 2 discs at bottom of spine are degenerating.

So for our scoliosis and my disc disease we will need to be monitored through the years by osteopath, just in case they worsen.

For son's ventricularitiss.....something...pediatric neurologist.

FINAL REPORTS

I'll post the final paperwork reports here when we get them.

Well, that pretty much concludes anything about chiari or the chiari institute for us, since we do not have the diagnosis. (My cereb. tonsils were at the opening but not under, so they will measure but do not see evidence of chiari.)

I cannot tell you how much better I feel having all of these pictures now, and having spoken with the docs at TCI! You were all wonderful and well worth the trip from Texas to New York.

BIGGEST TIP??? I am SO glad I bought the digital camcorder! And I recorded everything! It's like seeing the entire appointment again anytime I need to!!!! I bought a Samsung...something but it says 180 minute battery life on the side. And it I recorded a ton of stuff and still had like 175 minutes left of room (not battery life) of available memory. VERY VERY HAPPY WITH MY CAMCORDER PURCHASE!! It's not as small as some other camcorders, but it fit nicely in my stylish belt bag. (a device formerly known as a "fanny pack. I am trying to bring them back as "belt bags.")

The day after we came home from N.Y....I was getting ready to go to the dentist and the Chiari Institute called. There was an image or report that they didn't have when they saw us...they found a mass in my brain...they kept saying that it is benign and probably been there all my life.... I don't know. In our family mass = cancer. So when they get all the paperwork forwarded to me, I'm going to have it checked out by a neurologist. A little concerned about it.

Will post what I find out.   .....anna

4-22-2010 - The mass was a brain tumor (cavernous hemangioma) it was removed Aug 2009. I will have an MRI in Aug 2010 just to re-check. So glad it was found before it caused a seizure. Most aren't discovered until after a seizure has occurred. 

Update 1-12-2011:

Last MRI was fine. Nothing else was seen. There are still some parts of my head that still haven't regained 100% feeling. I guess there's another good reason to be "hard headed."