FYI

[n40066]

just so you folks know....i received an email from kelly meigel, dr. oro's assistant, today.  he could not remember if i told him i had a 1 mm or 1cm herniation.  he said that dr. oro DOES NOT see patients with less than 5mm herniation, as their guidlines do not consider anything less than 5mm to be chiari.
actually, below i have copied the actual email he sent me.
Elizabeth,



Can you tell me again how many millimeters of herniation your scan shows?  I think I wrote it down wrong, I have 1mm and if that is the case we will not be able to do a review for you.  According to our guidelines Chiari malformation is a herniation of 5mm or greater. Please let me know and we will proceed from there.  Sorry for the delay in getting back to you, I have had a run on film review requests.

Thank you



Kelly Meigel

Medical Assistant for Dr. Oro'

Phone [phone]

Fax [phone]

this is a sad day for chiarian everywhere......a sad day indeed!

[n40066]

i'm still not sure i want to travel that far, to be honest with you all!  i have recently heard of another dr. in pitts., pa and that is waaaay closer!  will decide by monday which one i will use for my 3rd opinion and let you all know.  i have family in denver, but apparently that is 4-5 hours from where dr. oro is, so i would have to pay for a hotel there too, plus the airfare for the 4 of us.  would be a very heavy financial burden at this point in my life!

[Prism272]

I'm happy that you'll be getting some solid answers and great help. My Uncle's Neurosurgeon is pretty reknowned (sp?) and when he heard I needed a Chiari Specialist, he told us "Dr.Oro' is the BEST. Just thought that might make you feel good to know.
When is your App.? I sent my records but dummie me deleted Kelly's email by mistake and I need to send her one back. I hate the brain "fog" or "farts" or whatever you call it. lol. I haven't even posted in a while becuz it's hard to put thoughts together, besides all the pain.
Anyway.... I send you
Warm thoughts and a hug,
Donna

[alexiwildchild]

yay!! i'm glad you weren't refused...i hear he's really a great one to see :D  that's why i was so bummed when i didn't get anymore answer than no lol.  docs get confused easily too haha---i knew it!
hoping he gets you all fixed up!! when are you seeing him?

[ChiariWolf]

Good news for you! How soon can he get you in?

The 5 mm things ... well kind of stinks as there are several who have horrible symptoms with less herniation that that....

I really do hope he can quickly get you the help you need!

Wolf

[lu7997]

darn metric system  screws up even docs  LOL

I am so glad you get to see Dr. Oro he seems like he is a wonderful doc and you will get all the help you need.

angie

[n40066]

lol!  ok...so maybe i need to do this in milimeters....my herniation is 10mm (this is equal to 1CM)!  i was not refused!!  i made this post only to alert those who have chiari 0 not to waste their time trying to get in to see dr. oro!!!
but thanks for your concern, alex!

[alexiwildchild]

hey there!  sounds like what happened to me when I sent them my MRI's.  I didn't even get that much an explination really---just mine said no chiari and it was because the size and that they don't deal with "chiari zero".  that is why they thought TCI had contacted me due to them supposedly in some way treating/seeing patients for it.  He didn't even see about any other things with mine, just the size of the herniation apparently--which I had 2 contradicting MRI's--one saying 6mm, the other something like 2-3mm.  Was pretty disappointed to say the least.

Hang in there!! Have you sent your MRI or email to TCI, or were you not considering there?  I am supposed to have an appt in Dec, but it may not be specifically chiari, i think they may be thinking some pseudotumor cerebri as well...WHO KNOWS loL!

Hope all is well, it will all work out, I'm convinced!! :)