I faxed my MRI report to Dr. Oro's office yesterday, and received a call back today. My MRI report says "Patient has somewhat low lying cerebellar tonsils without evidence of frank Chiari malformation."
The office (I think was Dr's assistant) called today, and said that the report says I don't have the Chiari malformation, so they won't schedule me an evaluation at the time. He gave me two options: stick with my neurologist and the treatment plan or I can pay $75 and mail my MRI scan to Dr. Oro and he'll review them himself.
I'm at a total loss of what to do now. I read all the symptoms of Chiari malformation, and I thought everything clicked. Now I feel like I'm back at square 1 once again. My neurologist is a PA, and I feel like I can never get a word in the 2 times I've seen him. I feel like I'm not heard, and my symptoms just dismissed. All I want is an answer besides "Oh, everything's normal" and something that will fix it.
Try going onto the Mayfield Clinic's website. They have a questionairre you fill out and send in. Afterwards I had someone call me for a more in depth history of symtoms etc., they had me send my most recent MRI's. The doctor reviewed it today and i got a call at 11am.....i have an appointment on April 30th. The Mayfiled is in Cincinnati Ohio so I don't know if that will pose a problem for you insurance wise? Out of network? I have been dealing with this for 7yrs, I have a 5mm low lying cerebellar tonsils with ectopia, all the symptoms but radiologist always said the same crap it's not Chiari.
Someone on here suggested the Mayfield clinic to me and for once I was taken seriously.
The MRI reports are often wrong…They list Chiari as an incidental finding, if they even acknowledge it at all. You should have Dr. Oro look at your actual scans. Does it really cost $75 to mail your scans?! Can your referring doctor mail them for you? That is what mine did. My 1st MRI report said that I had a 4mm herniation with no evidence of Chiari, so you can’t trust the reports to be accurate. Later MRI reports acknowledged that I had Chiari. I completely understand your frustration. With a condition like Chiari, we have to be our own advocates. It sucks, but it’s true. Please don’t get discouraged…I know this is easier said than done, but we really do understand your struggle to get a proper diagnosis. I hope this helps:)
Thank you both. I will check into seeing if my doctor will mail them for me. I guess since I'm trying to do a self referral there, maybe that's why they're charging?
I don't have any helpful advice, as I am very frustrated myself lately. I just wanted to say I'm sorry this is happening to you. Sometimes it just helps to know that people acknowledge what you are going through is real and it stinks. I hope you get some good care and some answers soon. Keep pushing!
When I was first diagnosed, I mailed my test to Dr Oro. He stated that I was not bad enough to make the trip. A few years later and a new NS here wanted to do surgery on me. I then contacted Dr Oro's office and they set me an apt because in the 3 years my herniation doubled in size. I LOVED Dr Oro and his entire team. They are the best drs office I have seen yet and I have seen a lot. Even if you have to send the $75 to him, do it. He will be very honest with you and can offer other ideas that might help. This is all that he does. Good luck to you!!!
Write a list prior to speaking with any doctor because we all tend to go stupid when they come in the room. I actually put mine together, bring it with me and hand it to him. lol
My neuro seriously let me get in about a sentence the first time I've seen him, and he wasn't any better the 2nd time. Maybe 3rd time's the charm. Who knows.
I think I'll go ahead and send in my MRI to Dr. Oro & just suck up the $75. It'll be worth it if there's really an issue there, which I believe there is.
I am sorry you have to be going through all of this... I was happy to read that you are sending the MRI to Dr. Oro..I have no personal experience with him..but I have only read great things about him from others.
Thank you. I will probably have to wait on sending the reports to him. Don't have $75 laying around to toss at something that is a hit or miss. Hoping that I can send them in soon though.
ETA: Can I attach a few images from my MRI to see what anyone thinks? Obviously it's not medical advice, but you all seem more knowledgeable than I am about Chiari.
I keep seeing Dr Oro's name on multiple boards too! I understand completely how you are feeling my doctors office didnt want to send me for an MRI I had to push for that even though I was unable to walk without my hubby holding me up..this started in November! They did the MRI in March and the report said mild chiari they didnt even list the measurement lol I called the imaging place and the first person said they didnt know and then someone called and said no more then 4mm...from what I have read it can be different on either side..one doc measures from here another from another place. I researched specialist called my insurance and made the appt. I went in with my list started to tell him about no measurement and he said that doesnt matter! He sent me for CINE MRI and I waited anxiously for results, I knew in my heart there was no way I didnt have flow issues but I was so scared because I was laying down (only time I have little relief) that it wouldnt show it did and I am having surgery on Thurs. I guess what I am saying is go with your gut go to a local doc and ask for CINE then if there is flow issues send that report to Dr. Oro I'm sure that they would order it anyway but maybe this will get you in the door without wasting 75 bucks! If your like me I havent worked in months and I'm a nurse I can't waste 10 bucks :) Good luck I hope you get some help soon!!
Just uploading 2 of my images from my MRI scan. Does it look like Chiari to anyone or am I wasting my time stressing over something that's not there? lol I feel crazy either way. :-)
Looks like it to me, as well as crowded and not much room for proper csf flow.
I only play a Dr on tv though, so don't mind me. ;)
I had to send my MRI disc in to The Chiari Institute to review before they'd schedule me for an appointment too, but I didn't have to pay them to review them.. That kind of stinks. :(
I honestly cant remember when I first sent my MRI into Dr. Oro but I want to say that they billed my insurance. Call up there and ask if they still do that.
I know that the Mayfield Clinic does bill your insurance if you pass through the questionairre, you have to fill out for possible Chiari....that's what I had to do, for the Dr. to look at your MRI's, flims and health history. If they feel that you have Chiari or something else their spine and neck center deals with, in my case Chiari and pituitary gland tumor, they will tell you what they think it is and if they can help or if they can't who you should see. They aren't like every doctor I've seen and said "Sorry it's not this, or that, or you are stressed, crazy" etc
