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Aug 23, 2011 · Chiari Malformation in Brain & Nervous System

Hi Kris

I’m sorry. I can say I feel what you are going through. My headaches have mind of their own too, comes as they please. It started with going to the gym but now I get them anytime, doesn’t matter if it strenuous or not. My neurologist gave me Zoloft as a remedy now, which is making other things worse. Waiting for my surgeon to call back. Who knows when he will call. Your herniation seems larger than mine, mine is 6 mm now but now sure if it will get worse. I don’t get nausea…yet. But it will make the condition worse. I hope you can find the correct doctor and try calling Mayo in AZ. I am in AZ and trying to contact dr. Naresh Patel who is a neuro surgeon here at Mayo. See if you can schedule an appointment with him.

Aug 22, 2011 · Chiari Malformation in Brain & Nervous System

Hi Kris

Sorry for the delayed response. Been having headaches again. I did read your message. I’ve talked to a surgeon for my condition but haven’t heard back from him. I also have made an appointment with Mayo but it’s in October. One of my friend has had this surgery before and told me that UCLA has one of the best Chiari Centers. I will send you some links, you can contact them. Where are you located? Can you travel to Los Angeles?

I also sent you some links, hope they help! All the best to you.


Aug 22, 2011 · Nsaira, I am new to this site and have been searching for in Just Want to Talk

Link to UCLA chiari docs below
Dr. Ulrich Batzdorf is a neurosurgeon.

American Syringomyelia and Chiari Alliance Project

The other MRI you need is a CINE MRI – spinal fluid flow study

Aug 9, 2011 · Chiari Malformation in Brain & Nervous System

Hey Manda,

Thank you so much for your information. I am getting severe headaches recently but with no other complications yet. I’ve heard that you can get paralysis and vision problems as well. I have made an appointment with a neurologist at Mayo in AZ in October( couldn’t get an earlier appt.) I have seen a neurologist and a neuro surgeon and the neurologist said I needed the surgery but the surgeon wasn’t a Chiari expert so he said I should try other options. That’s why I am going to get another opinion from another doctor.

I am having headaches everyday now and no medicines work for me. If I lay down and when i sleep I feel a little afterwards but the headaches usually come back.

I am going to have the surgery anyway, so it’s just matter of time when my surgeon schedules it.

Thank you again for your message. Take care.

Jul 8, 2011 · Chiari Malformation in Brain & Nervous System

Wow! He is s trooper. Best of luck to you and your son. Yeah, I didn’t even know this this until couple weeks ago. Headaches are pretty bad. I have an appointment with the surgeon end of this month to consult. But my neurologist said surgery is the only option. So did they operate right near the back of his neck? All the information on the web looks like there’s no other way to fix this other than surgery.

Jul 7, 2011 · Chiari Malformation in Brain & Nervous System


I just got diagnosed with Chiari Malformation type 1. I get severe headaches if I do anything strenuous. Liked to know someone with my syptoms and how you are all handling it?

Thank you,