beyond baffled---response from TCI and Dr. Oro

[alexiwildchild]

hey everyone!

well, as some of you know, i sent my MRI/papers to both TCI and Dr. Oro, as there was some confusion from my regular neurosurgeon here as to whether I had Chiari or not (first he said yes, then a new MRI radiologist said no).  So...I responded that I had heard back from TCI about 2 weeks after sending my stuff, and they were wanting to set up an appointment.  OK, so that kinda would make me think they saw something that was chiari related on the MRI's I sent them.

Well, I have been patiently waiting to hear back from Dr. Oro's office first, as they are closer to make any kind of appointments.  Well, after almost 5 weeks, I got a call from his office yesterday saying that he marked on my stuff, "no chiari, do not schedule".  WHOA===let me say I was severly upset and didn't know what to do. so the lady said she would have his nurse practioner call me back to discuss some things, this was after i told her that I got a call from TCI trying to schedule and I didn't understand what was the difference.

So today, I got a call from his nurse practitioner--who was very kind--but couldn't give me much of answer as to why, and just said the measuring is different by radiologists etc.  she said something about they measure from the cerebellar medullary junction (?).  I have been trying to research this and can't find much of anything...as far as diagram/etc.  I mean, I kinda get where it is...but how is this different than the protrusion from the foramen magnum???
I AM SO LOST AND SO UPSET!?!!!!! i honestly don't know what to do anymore.  i am soo tired of docs being confused and not being able to give me a definitive answer.

what should i do?????? call TCI back and get further info as to what they saw on the MRI"s that would make them think they could help me?  I don't know what to do!! i feel like just giving up! it's been over 2 years of hell and now i'm back at the beginning---i can't do this much longer without losing my mind.  the thought of being like this forever is almost too much to bear.  I'm freaking out!!!

any thoughts would be much appreciated :)

[youngwife]

Another good option would be to email Dr. Rosner in NC.  I think his opinion would probably be that you have Chiari Zero.  But, contacting him would be a good start.

Blessings,

Rebecca

[alexiwildchild]

thank you all so much for you input and help with this!! i will be emailing TCI doc to try to have further information on my MRI's and what they think they may have seen.  I have googled texas chiari specialist and haven't really come up with much--so any names--shoot me some info :)  i haven't heard of the doctor in florida, but i will def check it out--thnx :D

hopefully i'll know something sometime soon lol!! i'll keep ya'll posted--and thank you again for all your help!!

[selmaS]

Hi...there r drs in TX.....however I am not familiar with them nor r they on our list.
Some drs names do get on lists as a chiari specialist even when they r not...this is y I always suggest u research all drs u r interested in seeing.

[flcrakar]

Dr. B @ TCI did mention for Florida the three major players and "there are some good NS in Florida"....UF, Mayo or Miami if I decided I wanted to have the surgery down here. Since I am closest to UF I intend on establishing care there so at least when I am ready and can not stand the symptoms anymore at least I will have someone familiar with my case.

[rozia]

WHY DONT YOU SEE Dr Green in florida

[selmaS]

U do have to go thru the person asigned ur part of the alphabet.....to get the appointment.If u continue to have a problem with ur assinged person, there was another woman, I believe Dr M's assistant that was very kind and helped me out. I am not sure with Dr M retiring if she is still his assistant in his research office, or if she is the assistant of the new head of TCI.
Kim O'Neil
Surgical Coordinator and
Executive Assistant to
Thomas H. Milhorat, MD, Chairman
Department of Neurosurgery
Director, Harvey Cushing Institutes of Neuroscience
Director, The Chiari Institute
phone:  [phone]
Fax:  [phone]
***@****


If u want, e-mail Dr Insinga.....ask him a few questions...tell him u r reluctant bcuz Dr Oro said u didn't have it and would like to know why/what reason they feel compelled to give u one.


***@****

This was my surgeon and I liked him very much.Maybe he can shed some light on things for u.

"selma"

[flcrakar]

If it is any comfort, just remember that MRIs can be taken from different views. So what is seen on one MRI may not be seen on another. This is also true for MRI vs CT. There have been many cases where people with cancer have not shown on CTs, but are very obvious on MRIs.

I live in FL and took the trip to TCI. It was worth every penny. Even though I did not care for the neurologist I saw there, Dr. B was a wonderful NS. He spent and hour and a half with my husband and I let me look at my films with him and I pointed and he answered. He, so far, has been the only Dr that has taken the time to do that with me. As far as I can tell through all my research, TCI is the only place that recognizes Chiari 0 malformation. TCi was also the only place I could find that has done over 2000 surgeries for this condition. That means to me that they have seen at least 2000 patients that needed surgery, not including those who didn't...even Dr Oro is only up to 500 or so. Do the math....this is why I choose TCI.

Remember....for the medical community this is considered a "rare disease/disorder", with that being said most of the medical community can't decide on "the text book" box of what is and what is not chiari. Even the neurology community can agree yet.

Just some food for thought....keep you chin up and know you are not alone. We have all had years of symptoms and no resolve. You are your own patient advocate!!! Don't let the doctors rule your life and if you have to remind them why they went to medical school!!! That is what I have had to do recently, tears, yelling a few choice words and all!

[alexiwildchild]

hi selma! thank you so much for you input and advice.  well, here's the thing, i sent the same copies of my MRI's to both places, so they should have had the same view--as far as I know anyway--I don't know what views exactly though.

Well, as far as relief, she didn't really know what to tell me.  My main issue is my constant jumpy/shaky/wavy vision..and from what all docs have said--nothing to get rid of the problem cuz it's neurological. ARH! of course, i've taken meds for headaches, but they don't go away.  other than that, just strange symptoms that don't seem to have any real way to get rid of them--red, swollen hot extremities, tinnitus, etc.  so basically, she just said to maybe try a new neurologist.  YEAH RIGHT!  i hate to say it, but i kinda feel like i wasted $40 on that...but I know he's a good doctor, just mad that there was no other reason why or explination on his part as to why "no chiari".

Soooo...I will definitely try to contact TCI to get further info as to what they think they saw.  Is there anyone specifically that you think i should email?  i kinda wasn't impressed with their scheduling lady that i was talking to...she didn't give much info about it, and i think i wouldn't get anywhere if i tried to talk to her again.  so i guess the best way would to email a doc there or just schedule a dang appt, even though now i'm really afraid of being let down and being told NO i don't have this, and we don't know what's wrong with you---after being told yes. I am sooo tired of this!!

[selmaS]

Hi...my goodness what a position to be in......well may I ask what views of ur MRI's were sent to TCI and  Dr O?

I am wondering if TCI feels something is going on even with minimal herniation u could have overcrowding.

It is possible to go to TCI and they tell u u r not a surgical candidate.But they may tell u what else is going on. If Dr Oro is closer, I would send an e-mail asking for suggestions for relief from the symptoms u r having.

The drs at TCI will e-mail u also and maybe they will answer u as to what they feel is going on so u can make a choice.

I am surprised that Dr Oro didn't even see u or give u an exam b4 he made a decesion.Not saying it is a bad thing, he knows his stuff, but I am just as confused as u r.

"selma"