Looking for advice

Hello. I’m hoping I can have some opinions here. I live in Canada. Since I was 18 I have suffered from severe headaches. They are debilitating. My doctor has always attributed them to my scoliosis but in October I started getting incredibly dizzy, falling, nausea, ringing in my ear and pressure in my face. After an MRI, the report said I had Chiari Malformation type 1. When I went to the neurologist and neurosurgeon they both said that my Chiari is very mild 4.8mm

herniation and it’s not the cause of my symptoms. Is it fair to ask for a second opinion? I know that there is something really wrong as I can’t get through a day without a number of symptoms but I feel like because it’s under 5mm no one is taking me seriously. I’ll attach my MRI pics for reference. Really just looking for opinions and insight as to others experiences. I have an MRI coming up for my spine as well

Hey Andrea,
Welcome to Ben’s Friends.
My name is Merl I’m a member of the Modsupport team here on Ben’s Friends.

Yes. If you are unsure or unhappy with the first opinion, you can always ask for a second opinion. But I will warn you, you may get the same answer or the dr may simply refer back to what the previous neurologist opinion. I didn’t just get a 2nd opinion. I got a 3rd, a 4th, a 5th…I wanted to hear all of the opinions. What were my options?

Some dr’s are of the opinion that if the herniation is less than ‘X’ mm, symptoms will be minimal and for some this opinion maybe correct. But if you read through some of the personal experiences here, you’ll find a few others with minimal herniation but maximum symptoms, so using herniation size as the sole indicator simply minimises the patient’s symptoms. Now, I must also say here that I too am a neuro patient, and that ‘patient minimization’ is rather common. I have been ‘minimized’ more times than I care to count. “No, your symptoms are not related…” “Ohh, it can’t be THAT bad…” “just carry on…” etc, etc Then there’s the labels like idiopathic in nature, hypochondriac, drug seeker etc Yes, I’ve heard them all.

You know ‘You’ better than anyone and if you feel ‘something’s not right’, then it’s up to you to speak up. They can’t feel your pain, they can’t feel your symptoms. They may profess they know all about it, they don’t. I often wonder how different things could have been had I not just simply taken the ‘Dr knows best’ attitude and yelled and screamed from the roof tops. I’d tried telling them, but it was all minimised until things were at the point of emergency. Don’t let it get to that point, get a 2nd opinion.

Best of luck with it all,
Merl from the Modsupport Team

Welcome to the club

I too am in Canada. I would definitely get a second opinion and be sure to view and discuss the horizontal view of the foramen magnum. What we typically see and what you posted is the sagittal view. Also be sure that the neurosurgeon actually looks at the images with you. Neurologists typically just read the radiologist report. You can definitely ask the radiologist to report on the horizontal view as well. You can be seen as a pesky patient though so it may be best to have a consult with different doctors. Good luck on your Chiari journey!

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I think I only have a 5mm herniation but have had much the same experiences. The pain started when I was 12 but I wasn’t diagnosed with Chiari until I was 35 or so. Many of the doctors I visited before my diagnosis dismissed me or thought I was only after pain meds when that was not the case. I received some good support and advice on this forum and got a 2nd opinion from a new neurologist. That one didn’t necessarily think that my pain was from Chiari but referred me to a new neurosurgeon all the same. The neurosurgeon said she wouldn’t normally recommend me but would do the decompression surgery if I wanted. She said that my Chiari was mild but that didn’t mean the symptoms were. I had the surgery 4 weeks ago today and I’m hopeful.

Someone on here, probably Merl lol, told me that I am my best advocate and that has stuck with me. Every doctor has different opinions. If what they tell you doesn’t make sense or feel right, seek another opinion.