2 MRI's showing Chiari, NS says its not Chiari.?

General
1

I had my first visit with the NS today and it did not go at all like I thought.

First, he asked me all the questions about my symptoms had me walk a few feet and back, close my eyes touch my nose. The regular run of the mill, just much less thorough. After all that, he explained to me that the MRI reports from the head and cervical spine showed a Chiari 1 Malformation. The head MRI done in Oct. showed 6mm herniation and the cervical spine done last week showed 8mm herniation, but in his opinion, if he had been the dr in charge of reading the report he would have diagnosed the MRI as “normal” no Chiari. ??? His opinion is that no matter the number, if it’s not past the C1 then it doesn’t count as a Chiari. That all my symptoms have nothing at all to do with Chiari, but he guesses that it is “Cluster headaches”. He said that everyone has a Chiari herniation to some degree.

He recommended I be seen by a headache specialist, but he would like to run a CINE MRI to check my CSF flow. But if I don’t have a Chiari, then why would he run that? I agreed to it because I’m going to need that when I seek my second opinion.

I just couldn’t believe how I can have 2 different MRI’s from 2 different hospitals stating that I have this, and have him look me straight in the eye and tell me it’s not a Chiari. I certainly don’t want to have CM, but it’s on my scans and I’ve been suffering with symptoms of it for years thinking it was something else. Not to mention feeling like I was crazy when no dr could figure out what was wrong with me because my symptoms didn’t make any sense. Who knows maybe I am crazy.

He also told me that he sees 2-3patients per week with this same condition and he sends them away. He also told me that he would be happy to cut open my head and leave a “nice little scar” if I’d like him to, but chances are it wouldn’t help my symptoms cause that’s not what I have. Wow, I didn’t even ask about surgery, but thanks for discouraging me. I really got the feeling that this dr thinks CM is a joke and was not going to listen to me.

I’m so frustrated, but I know I can’t give up yet. I’ve got an amazing husband and two beautiful children to think of. All I want is to get some treatment to help relieve some of these symptoms. I know that there is no fix for this, but I’d love to have some of my quality of life back.

Any ideas as to where to go from here? It is obvious that I need a true CM specialist this time. But how do I find one. When I talked to this office they said they are all specialists in this because they are neurosurgeons, not true!! How do I find one who will tell the truth about there expertise?

My last question is, has anyone else had a dr tell them this isn’t it even though the report says it is?

Any advise would be most appreciated.
Thanks.

2

Hi kristi, I had a discouraging first surgeon visit the beginning of November. They may all be specialists but they are not all chiari specialists (obviously). I really wanted a doctor close to home but after that appt. I said forget this I’m gonna have to travel. There are a few chiari centers around. The ones I know of are Cincinnati, Wisconsin, new York. Well that’s all I can think of right now.
If you do much reading around here you’ll see that a lot of people have been told that their chiari was not causing their symptoms.

Donna

3

Thanks for the support(: I will definately be looking for another NS and I think I’m going to look into the Chiari center in WI or OH those would be the closest for me. I’m just not sure how to go about doing that and am concerned that my insurance may not cover.

If anyone knows how to go about speaking with these Chiari centers, and wether or not ins. company’s will cover, please let me know.

I am blessed to have found you all. It’s comforting to have people to talk to that truly understand what I’m going through. It can be so disheartening to be dismissed by Dr’s like this when it has already taken years to finally get dx’d. Just adds so much more stress to our life’s. Thank you.

4

Kristi, I checked with my insurance to see if mayfield is in our provider network. They are. They have a prescreen questionnaire on their site. After they get it they will contact you and let you know what to do next.

5

Thank you Donna! I’ll check into that first thing in the morning.

6

My insurance was out of network but Mayfield still made me an appointment. They will offer you a discount if you have to pay out of pocket. They have a financial team that will work with you! Of course that's just for the appointments, the surgery is a different matter but I was willing to pay the cost!

Go ahead and get the CINE because Mayfield will want you to have one anyhow!

Let us know how it goes! :)

7

Hi...

What a fool that NS is 'nice little scar'....jerk!!!

Now, time to move on...you mentioned the WI.....sounds like a good move.....let us know how you are both body and mind..this stuff can do a number on both!!

Here for ya!!!

8

Thank you for your support. I’m looking into the insurance coverage issue. If I have to out of pocket for too much, especially if I end up needing surgery, there is no way I can cover that. I may end up simply having to live with this, but at least I will know I tried.
As far as my body and mind, I’m doing ok. I have an amazingly supportive husband and two great kids that make all this worth fighting.
Thanks for the support. I’ll keep you posted. Hope all is well with you also(: