appointment set up at TCI...?

[alexiwildchild]

hey everyone--hope all is well!

well, i finally set up an appointment with TCI for Dec 15th and 16th.  I was kinda bummed and confused after the whole thing with Dr. Oro saying no chiari after I sent in my stuff, and TCI saying to schedule an appointment--that the review board thought it would be beneficial for more testing, etc.

So...here's the weird thing...when I was scheduling the appointment today--after a few weeks of phone tag lol--and she said the first day would be for testing (that of course unless my insurance only wants the testing done previously here) and that the next day would be there to talk to a neurologist, etc.  However, when I tried to request to see Dr. Insinga, she then said it only stated that I will be seen by a neurologist--NOT a neurosurgeon..... WHAT IN THE FREAK?!? i asked her why, and she just said that is what was on my file.  I'm wondering since my previous MRI's said anywhere from 2mm to 6mm and then to be checked for pseudotumor cerebri, that I won't even be able to have any kind of surgical intervention?  I kinda am like, why then, am I going up there? UGHHH...

any ideas would be awesome lol!! oh, and can we still schedule to stay at the variety house (?) if we aren't acutally having a surgery??

thanks :D

[selmaS]

I am glad I was able to offer some help.....let me know when u call back about Variety House....

U will need transportation to TCI offices...they r not far, but u will need a taxi or a car.

Also, if u schedule testing up there...the Imagining Center is a little farther than TCI from VH, but it is easy to find.

Good Luck
"selma"

[alexiwildchild]

selma---thank you again for your words of wisdom ;)  i must say, even though i know it *****, you know your stuff!!  i was wondering what the deal may be...i just don't want to have to make another trip back up there if it isn't necessary just to see their neurosurgeon on another day or something.  but i guess time will tell.  she said they will be contacting my insurance co...so we'll see what happens with that...if i get to go at all.  thank you again for your insight with this---hope you are doing well!!!

hey tiff--well, selma pretty much summed it up :D  that may be the reason why dr.oro in colorado said i don't have chiari...two different MRI's and different opinions, as well as thinking i need to be checked for the pseudotumor cerebri. so i'm just as confused lol!! have you found anything else out with your symptoms--get anymore of your reports?? keep hangin in there!

n40066 (sorry i can't think of your real name at the moment--dang brain lol)  thnx!! well, i suppose it's progress since it's been over 2 years and this is the best thing i've got going as a possible diagnosis so far lol!!  it is sooo confusing, and i'm just hoping i don't leave there with no answers, or back at the beginning of this journey...i don't think my sanity can take much more!!  how are you doing?? are you going to a NS?? hope all is well!

[n40066]

welcome back, wildchild!  glad to hear you are making progress, even though it may be a bit confusing! lol!  please keep us posted on how you are doing.  it's nice to hear when one of us is making progress...it gives the rest of us hope!  :)

[selmaS]

Hi...Chiari 0 is a chiari malformation that the herniation is less than 5mm. Many drs do not recognize it and consider it is not going to cause symptoms. Even sosme chiari NS's do not recognize chiari 0...so u will need to ask the dr if they treat it.

TCI and the Chiari Institute in WI both, I believe do treat this.

"selma"

[tbissell]

Hey alexi!! I have a question what is chairi zero? Has any of them( Dr oro, TCI) diagnosed you with anything yet, if not what exactly are they going to do at this appt. Sorry just a little confused

[selmaS]

Alexi....glad to hear form u!!

Yes, u do have to request a referral for Variety house when u make ur appointment...TCI gives the referral...they do not tell u that.

Now is the time to do it as many do use this service, at 25$ a night u can see y.

As to y u r not seeing a NS and just a NL..is neone's guess.....it sounds like they want to look more closely at u, and redo some tests...it is the NL that makes the DX....not the NS, so, u r going for a new DX...after that the NL will refer u to the NS.....

Just call back for Variety House info and say, if in doing my tests it is determined I need to see a NS, I would like to request to be seen by Dr Salvatore Insinga.


"selma"