Chiari Online Support Group

How many neurologists have you seen?

Have many of you seen several neurologist before one was able to diagnose you? The last neurologist I saw looked at my MRI and said he saw the chairi but he just didn’t think that was causing my symptoms. I just couldn’t understand how he could see it but not think it would cause any effect on my body. Curious to hear from others…

I saw three neurologists prior to seeing a neurosurgeon at my insistence. None of them actually looked at an MRI. Radiologists typically only make note of the sagittal view when querying Chiari and do not comment on the horizontal view. With my experience/talking to the neurosurgeon, both views (plus other stuff)need to be assessed to make a CHiari diagnosis and determine if surgery is appropriate. Do you know what both your views indicate?

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Hi, I have only seen one neurologist since seeing the Neuro surgeon. First he said it was the rout cause of all my symptoms, then he said it wasn’t, then he said it was. Now I’ve been referred to the Neuro surgeon and he said straight away I would need decompression surgery straight away there’s no doubt. Best wishes

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Hello. I, also, saw only one neurologist before seeing my neurosurgeon. He said something similar to what you stated. He had several questions about nature and duration of symptoms, he asked specific questions about other symptoms. (((I had only one symptom: Exertional headaches. My MRI showed 12 mm displacement of my cerebellar tonsils.))) He made several comments that even with the MRI showing chiari malformation it is possible that the symptoms are caused by something else. I will admit that I didnt like him much at first but the more I talked to him the more I understood that he was trying to avoid sending me to a surgeon. He wanted to disprove the evidence that the MRI evidence (chiari malformation) was causing the symptom and it could be cured with something other than surgery. Most things that happen in the body can be explained in a logical and i guess scientific way–maybe your neuro thinks something else is causing symptoms bc they don’t seem to logically connect to what is going on with your chiari. I hope that makes sense.

It is never bad or wrong to get another opinion. Do what is right for you. If you are not sure, find someone you can trust to help you make decisions.

Best of Luck to you!

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Hi,
I would visit a couple of neurosurgeons and get their views. I had a 13mm herniation and my spinal fluid was not flowing well. This is a major surgery and it may not stop your symptoms. Some people do better than others. You could be fine for years after the surgery and then have symptoms. No one knows. I had surgery in 2014 and I have horrible pain in my eyes, back,ears close off, and stomach pain. Thankfully, I’m still walking but neck pain keeps me in bed a lot. I wish the best for you.

The body/mind can only observe symptoms in so many ways and I guess it can be very difficult to say the Chiari is the cause of all symptoms. Eg weakness, headache, sensitivity could be related to a number of different conditions. In saying that I understand your frustration if you have horrible pain/sensations in your body, you want to know what’s causing it. I have seen 2 neurosurgeons and haven’t decided whether I want to proceed with surgery. Much as I am drawn to hopeful relief I’m also not really confident with my neurosurgeon. I had a similar experience being told it wasn’t Chiari and I asked was there any other causes for the symptoms and what other options do I have to effectively managed it that I haven’t tried already.
At the end of the day it’s a big decision, the rest of your life is ahead of you and if you think you would like another opinion I would suggest you do that.

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Well, I saw a rheumatologist and a neurosurgeon and got more answers. The NS was so sympathetic and validating. I have chosen to schedule the surgery- June 9th. His main concern is the progression of nerve damage it is causing. I’m very nervous about having the surgery. Mostly worried about the pain afterwards and recovery. I have confidence in the NS. He sees about 4-5 chiarians a week. He said my symptoms are way beyond the point most of his patients have the surgery. I’m willing to go for it if there’s a possibility to stop the progression of damage or the possibility to relieve/help any of my symptoms. The rheumatologist diagnosed me with psoriatic arthritis. That answered many questions for me too.

I saw 1 neurologist and she told me that chiari wouldnt cause my symptoms ( i experience every single symptom listed in the book for Chiari and had a 10 mm herniation) She told me i had fibromyalgia.
2 weeks later a neurosurgeon said my amygdala was crushing my brainstem and that I needed surgery.
I’m 3 weeks post op

Hey!

      When I was diagnosed with Chiaris by a Chronic Fatigue specialist, the first thing I did was Google "Chiaris Neurosurgeons."    I had just spent 10 years living in a Northwestern state where for 10 years, NONE of my doctors had even heard of Chiaris.      
       When I went to  Dr.Rosner in Hendersonville,   Chiaris decompression was ALL he did.  (still does).   I was required to get a 2nd opinion because of some medical issue - so I chose one in the huge city of Charlotte.  Dr.Rosner warned me that other neurosurgeons will probably say I don't have Chiaris.  That's because my tonsils were oozing out the SIDE of my head - not straight out the back.    
   Sure enough.  The Charlotte neurosurgeon said I had no Chiaris and that I didn't need surgery.   Even though I told him to check my MRI - the sides of my head and all, he only viewed the medial view - as though that was all that mattered.
   ANOTHER thing Dr.Rosner told me that sticks in my head....  he said that the length of the herniation has made no difference as to the severity of the symptoms.   Out of the 100's of patients he's had,   Rosner mentioned that he's had patients with huge 1-inch herniation who come strolling into his office complaining of minor headaches.  On the other hand,  he's had patients with a mere 1mm herniation who have had to be rolled into the office in wheelchairs and total zombies.  Everybody is different.

I was one of the ones that was wheeled in.
Eventually!

My family doctor sent me for the MRI from there I saw one neurologist who sent me straight to my neurosurgeon all within a month in a half. My husband works for a private airport and I did talk to a neurologist who has a plane there and he blew me off like my chiari wasn’t causing me all of my problems when I went to the one who sent me to my surgeon she definitely believed that my 5mm herniation was indeed causing everything! Be percestent! You may have to see 2-3 different ones until someone listens to you. You know your body and how much pain and ect that you are in! No one else!