confused

[wittyd]

My 15 year old daughter has had symptoms for over 2 years. We have been to doctors in 2 states and 3 cities and finally last Friday got a diagnosis of Chiari malformation from a MRI taken 2 yrs ago. (Neuro muscular specialist at UMC) Yesterday had new more extensive MRI from head to lower back that the local radiologist radiologist read as negative. We are now even more confused! We overnighted the MRI disk to the specialist at UMC and are now waiting to hear his take on the MRI. Is this normal to have different interpretations of MRIs? Where should we go from here? The UMC read was 15mm and the local radiologist said 0mm.

[wittyd]

She has had both CT and MRI but the MRIs are the ones we are working with at this time. We have been trying to get an answer for over 2yrs.

[wittyd]

We did have another neurologist look at it and they think it is Chiari so sending to 2 different specialist to look at the MRI. Did speak to another family here that their daughter had surgery 10 yrs ago. Their daughter's MRI was misread by the same radiologist that read ours as negative.  

[desertstorm2009]

Understand CT's and MRI 's are different tests and with that said, it is not at all abnormal for those tests to show different findings.

[desertstorm2009]

First of all, a 15mm herniation identified on an MRI of the brain is exactly that. It is not even feasible that another radiologist would interrupt that as a "zero" finding. Not even mentioning the "Chiari". Something is clearly amiss here. MRI's do not change; and while interpretations of size may vary slightly, if you are comparing the same test, NO that large of a variation in the reading is not at all normal. Seek another opinion. Lisa

[ChiariWolf]

Absolutely ! Unfortunately kind of the norm it seems with Chiari.

Important thing for your family now is to stand strong, together, and accept
that 'most' Doctors either don't know or flat out refuse to acknowledge Arnold Chiari Malformation exists or even is an issue. We have change our mindset....  In our day, age and society many times Doctors are viewed as
the know all.... Well we have to accept they are not. The best they can do is take an educated guess. Thereby we must search out ones who are humble and have enough 'wisdom', not education, wisdom to listen first and then research records and eventually diagnose. A True Chiari Specialist is a must but even then YOU need to make certain that your mindset is that of a 'customer'. As a customer you won't accept mealy mouthed answers only fact that can be proven to your eyes. In the lack of visible fact the best Doctor will say 'I don't know but maybe' or something similar.

Just don't give up there is help for her.

CW

[selmaS]

  Hi and welcome to the Chiari forum.

Yes, it is possible to get different opinions from the same set of films....the issue is not if Chiari is there, but if the Drs reviewing them believe Chiari is something that needs to be addressed.

Chiari for the most part is new to many Drs and their radars as MRI's were not always around to detect them, and once found, what did it mean? To many not much as they feel the tonsils herniating is normal due to gravity....and others only use the length of the herniation to classify it as Chiari, when Chiari is the malformation of the skull which results in the herniation....so very frustrating for those of us dealing with the symptoms which again, many Drs refuse to Believe occur.

Get and keep copies of ALL testing reports , MRI's on disk....make copies and get as many opinions u can get, but research the Drs first to locate true Chiari specialists...(they research Chiari and know the cutting edge treatments).....we do have a list of Drs for u to use in researching Drs, the list is compiled by the members here of Drs they have been to, treated by and liked....the list is NOT a referral nor an endorsement for those listed on it....
http://www.medhelp.org/health_pages/list?cid=186

If u have ne questions feel free to ask, we will do our best to help guide u thru this...know u r not alone <3