Chiari Online Support Group

Help i would like opinions


#1

Hi, I have finally received the images from several MRIs. The radiologist noted a borderline Chiari 1 as possible cause of my headaches in the latest MRI but the previous MRI it was not noted however they look the same to me. Because of this My neurologist dismissed the radiologist findings since it had not been previously noted. one of these were taken in March and the second in August. I have had a horrible headache since March at the lower back of my head and in my neck, with numbness in hands and feet and off balance, and terrible light sensitivity. Neurologist diagnosed viral Meningitis in March. but does not think symptoms are related to meningitis anymore, but is not giving any other suggestions. do these MRIs look like this could be chiari? I am trying to find a doctor in my Insurance network to get a second opinion, but is has been a slow process.![march%


#2

Folks on the site are not doctors nor trained in reading MRI imaging nor reports. We tend to not to be able to comment with anything resembling knowledge! I do understand your frustration of not getting your answers addressed nor your symptoms explained. It can definitely be a run around to find anyone who is knowledgeable. Please have a look at the posting titled “MRI’s - whiy is my Chiari ignored?”. It has some good information and some practical steps to take. Good luck with your questing journey.


#3

I am sorry I was just looking for some opinions or thoughts. Not real diagnosis. I feel like the doctors think I am crazy, for looking for answers. And beginning to just feel like I should give up on trying to even get answers


#4

No worries. It is easy to feel rather lost in the medical world when you have a rarer complex health concern. What did you think of the posting “MRI - Why is my Chiari ignored”. What can you apply to yourself and to your next medical appointment?


#5

Hi Amyl - just wanted to say hello and let you know that you are not alone. I’m in the same situation as you, borderline Chiari was found on my MRI but as it was “stable compared to previous study” it was dismissed. Weird thing is, it was never even noted on my previous study. I’ve also taken a good look at my MRI and can see I do have this but as far as how many mm’s I can’t tell.

Have you had any luck finding another doctor who can look at this with you? I’m very discouraged with the medical field also and get the same feeling as you, like they think I’m crazy. Be persistent in your search for answers.


#6

Hi Amy. I went 2 1/2 years without a diagnosis. Through all of my research, I believed I had Chiari as my symptoms were textbook. The problem was that I had had an MRI and no herniation was found. I eventually came across a Chiari specialist in Milwaukee, Wisconsin, who has found that people with only minimal herniation can suffer from horrible symptoms and that an MRI is only as good as the person reading it. His name is Dr Daniel Heffez. He is head of the Chiari Center in Wilwaukee. He will look at your MRI for free. Phone number is 414-■■■■. Hope this helps.


#7

I see the phone number I gave you is blacked out. Just google Dr Daniel Heffez or The Chiari Center in Milwaukee.