Today I went to see a neurologist to get a referral for a spinal MRI to find out if I have a syrinx and maybe medicine to help control my constant pain. He asked me about my symptoms. I told him what they were. He basically said that the chiari is to small to cause symptoms even though it is a 9mm herniation and that surgery won’t help me. Also that my headaches aren’t from chiari and neither is my constant nerve pain all throughout my body. That I have fibromyalgia and the chiari was an incidental finding so it basically wasn’t relevant to my symptoms. I feel so defeated and so hopeless.
Is there such a thing as a good dr visit?? And neurologist appointments, those are the worst in my humble opinion. I’ve seen 5 differing neurologists and gotten 5 differing opinions and each one has been convinced that only ‘their’ diagnosis is correct.
Neurologists work on theory and some have the theory that if the tonsil is less than 10mm you will not have symptoms and yet if you read through the pages here you will find that this is definitely not the case. There are many reports of members having a minimal tonsil but reporting HUGE symptoms and yet there are members with 20mm tonsil who show minimal symptoms and are only diagnosed incidentally via a dental scan. Some neuros hold the ‘10mm’ theory up as a rule, but this is far from a rule.
Do you know if you have access to a dr who is knowledgeable in Chiari specifically. I’m sorry to say this but from my own experiences, when it comes to neurology it seems there are lots of dr’s who know it all. But the reality is nobody knows it all, they are still learning all of the intricacies of the human brain, so to make out they know it all is wrong. I would strongly recommend you investigate and try to find a neuro who specialises in chiari and preferably a neurosurgeon who specialises in Chiari. Neurologists work on theory. Neurosurgeons work on the brain.
Please DO NOT lose hope because one neuro has given you one opinion. You have every right to seek a 2nd opinion. Like I said before I got a 2nd, a 3rd, a 4th…etc opinion, and even then it wasn’t until I saw a surgeon that a plan of action was established.
Best of luck with it all and please do let us know how you get on.
Merl from the Modsupport Team
Thank you so much for this! I am trying to find a better doctor. But having a really hard time. I’m Gonna go to Duke in Raleigh I believe. But I’m trying to find the best one there
Natalie, it is absolutely worth your time and effort to find the doctor who is the right fit for you.
Go for it, and let us know how you get on.
Seenie from ModSupport
Sounds like you’re in NC! When I was diagnosed with Chiari’s by a Chronic Fatigue Specialist in Charlotte, the first thing I did was Google “Chiari neurosurgeons.” To my dismay, the top one listed was based in Hendersonville. All Dr.Rosner did was Chiari decompression surgeries. Unfortunately, at the time, he was under a law suit from a dissatisfied customer. So, I was required to see another neurosurgeon for a 2nd opinion. Dr.Rosner told me to pick anybody else - in Charlotte since it was close by. But, he warned me that I was probably going to told by all other neuro-docs that 1)I didn’t have Chiari’s, and 2) didn’t need decompression surgery. I only had a 1mm herniation, and it was oozing out the SIDES of my skull - not the back. So, it was highly likely most docs wouldn’t even see it on any MRI because side herniations are not looked for.
Sure enough. I went to premier neurosurgeon in Charlotte, and he told me he saw no Chiaris at all. I didn’t have it. No surgery needed. I am so grateful I threw out that opinion and went back to the expert. In 2012 I did have the decompression surgery and am SO GLAD ever since. I have not recovered fully, since I was diagnosed after 10 years of symptoms - I do have permanent brain stem damage from the ‘squish.’
Dr.Rosner is now retired. But I do know that he always referred pediatric cases to Chiari specialists at Duke. So, I am thinking you should have good luck going to Duke. Make sure the neuro-doc does know what Chiaris even is - like a Google research might help with that.
I would definitely get a second opinion. Your symptoms sound similar to my symptoms. (I am not a doctor though) I have done a lot of research on Chiari and the size of the protrusion doesn’t necessarily correlate to amount or severity of symptoms. Keep your chin up! I know it is hard and you can get frustrated, but getting irritated just makes me feel worse. I went to the Chiari Clinic in Manhasset, NY- ( this was in 2002)- and they specialize in Chiari. If you have any questions or if I can help you in any way, please reach out! Hope you feel better soon! Sincerely, Shana