Very confused- 2 Chiari Specialist 2 DX's

[Kayera]

Im so confused. I went and saw Dr. Seiff in Vegas and had a new MRI. It showed hypo plastic posterior fossa and 7mm chiari. Dr. said it was not 7mm and the radiologist is wrong. It is between 3-5mm but he was more concerned with the measured indicating a hypo-plastic posterior fossa. he told me my symptoms are very likely coming from this.

I have had 3 mri's 2 say 3mm and 2 say a bit elevated flow at the foramen magnum.  2 say 3mm, and the other 7mm.  
Had 5 doc's look at it. 2 said 3-5mm. One doc said 3.5, one said 3mm and DR ORO said NO CHIARI AT ALL!

Very frustrated and confused. Dr. Seiff said alot of doc's are not aware of the new research regarding the hypo-plastic Fossa.  He also worked closely with Dr. Rosner years ago. his PA was the first to tell me I had Chiari. He said he looked at the films and saw it instantly. But Dr. Oro is supposed be great. So sorry but WTF ??!!

Thoughts please...

K

[Kayera]

Talked to Chuck, that got the info from the nurse, then Dr. Oro.

[selmaS]

  At this point I have no idea where I got it either.....but no worries...the thing is to try and find someone that can help u....and go from there.

[Sexybare]

Dr oro truely is a fantastic ns. I'm sorry he wasn't of any help to you. I'm also sorry you had to pay for that. I wonder if that's something new for I did not pay for him to view mine. But that was back in jan. He is my ns and I would not let anyone else touch my head in the future except for him. But as said in a diff post, he has guidelines of who he sees. I trust him %100.
Tho not happy with staff at the moment.....took 3 days for a return phone call and then I missed it, so I called back and waiting again. Hmmmmm. Tho I'm wondering, did you actually speak to dr o about your results? Or a nurse?

[Kayera]

Yes I pd $75 for an over the phone consult review of mri.

I said I have hypo plastic posterior fossa. I didn't mention the 4th ventricle being hypo plastic until you said it was enlarged. Not sure where you got that, so I let you know it was also said to be hypo plastic.

Its okay, I'm sure you read tons of posts a day :-)

[selmaS]

  Sorry, I am having difficulty following....I was not aware the 4th ventricle was hypoplastic I thought it was the PF that was....I did not notice u said that in the reply....and had my thoughts already formed b4 seeing that...

I am at a loss as to what to say.

[Sexybare]

You paid $75 for dr oro to look at your tests results?

[Kayera]

Thank you, I have ruled out everything I can. Well except seeing a Neuro-opt. for eye appt. But nobody will refer me.

The 4th ventricle is hypo plastic- its small, not enlarged.

Thanks!

[selmaS]

  One thing u keep saying is there {Flow shows slightly elevated at the foramen magnum on one. But not elevated high enough for chiari. The other one shows elevated flow, that is moderate and moderate stenosis at the foramen } The problem arises when the flow is restricted not elevated...so not sure if they r indicating ICP as ur issue....would make sense with the enlarged 4th ventrical.

I can not explain how Dr O's office reviews MRI's or what criteria he uses to select his patients...I do know that he had to use the 5mm as a way to cut back as he had too many....as u can see by the number of members, Chiari is not a rare condition as it is usually stated in reports on the web but Drs that r well informed on it are very rare and inundated by all of us for help.
As Iris mentioned if u r comfortable with the other Dr and his suggestions u may want to stay with him...just know not all with chiari r surgical candidates, and that could be what Dr O was trying to say...I am not saying u do not need pain management but most NS's do not do that, they do surgery..that is it..we need well informed NL's as they do the dxing and the post op care that so many of us can not find bcuz well informed NL's r harder to come by then the NS's.....

Educate urself, move forward slowly..and make sure all related issues r ruled out b4 u make ne decisions.

[irislita]

U have to find the ns u feel comfortable with.i mean u are looking for answers and u know something is wrong.nobody wants surgery,but u want to be better...so go with dr.seiff

[Kayera]

I sent him over 2 Mri's. One was measured at 3mm and the other 7mm. Taken 8 months apart. The one that was 7mm- the doc that ordered it, did say the radiologist measurements are inaccurate and its between 3-5.
Flow shows slightly elevated at the foramen magnum on one. But not elevated high enough for chiari. The other one shows elevated flow, that is moderate and moderate stenosis at the foramen magnum.
Dr. Oro's office states NOTHING about the hypo-plastic fossa. They say there is something with the tonsils, but not enough for Chiari. And doesn't see hypo plastic nothing. Wierd because the other MRI states the 4th ventricle is hypo plastic, so kinda thinking Dr. Oro's office is NOT as good as everyone thinks and he has major blinders on, where he only sees 5mm or more. Which is stupid.
I guess it doesn't matter, I dont want surgery, I just want answers.
What a waste of $75.  :-(

[selmaS]

  Hi...Hypoplastic means that it is too small for the size of the cerebellum and brainstem . This is what Chiari is the skull is too small to hold the cerebellum and the tonsils herniate as a result...unfortunately, too many consider the herniation as Chiari...which it is not....

In order to be able to deal with the patients he has Dr O does not take ne with a herniation less then 5mm...I know and I agree, but until they can show the other issues u r having...and get the correct measurement....if the MRI's r not clear or the wrong slice they can appear smaller then  or as if they shrank or grew when comparing them to new or older MRI's so it is important that they be done with the right magnification and same views so they can be compared.

Did u have a CINE MRI too? U mentioned flow....

I am not sure if the MRI's u sent Dr O were clear for him to see the Chiari malformation of ur skull and he may have looked at the herniation which may have been a diff slice or angle....

Not sure if that helps....but it is very confusing and not too many use the same criteria which makes this even harder to understand.