Does your doctor really know?

How do you respond to your doctor when he or she says, "I do not think that is a Chiari related or
That is not a symptom."


I had this happen to me today as my neurologist nurse called me to report the findings of my MRI (which I already knew because I requested a copy of the radiology reports) that I had Chiari 1 Malformation with an 8mm right and a 6 mm left with a pegged shaped tonsil (not sure what that means). I was told that this was an incidental finding and that the CM couldn’t be the cause for my headaches. I’m beyond frustrated, and I want to scream. I’m scheduled to see the Neurologist on Friday 10/17/2010 and I have already began my list of question I’m going to present to her and find out how much knowledge of CM1 she actually has and then ask to be referred to a Chiari Specialist.

I really and honestly wanted to say to the nurse… Do you have Chiari? Do you know what it feels like to suffer on a daily basis? Do you even know what Chiari is? I’m fairly sure she didn’t have a clue considering she didn’t even know how to pronounce it and I had to help her with it. The nurse then proceed to tell me that “it’s something that I’m just going to have to live with, as I will not be considered for surgery until I have a 22 mm herniation or greater and that Chiari isn’t something that should progress.” Are you kidding me???

Yeah, sounds like my old Orthopedic Doctor I had when I was 17 and diagnosed, with an upper curvature of 43 degrees and a lower curvature of 28 degrees. This was also the same Orthopedic that said to me that I shouldn’t expect it to progress as I was done growing. Now I have an almost 80 degree and 60 degree curvature. Sometimes its really hard to have faith in doctors anymore after dealing with so much nonsense.


I’m actually in the process of deciding what to do next… it is extremely hard to find other chiarians in Washington as well as Doctors who specialize in CM1.

Thank you so much for all of the wonderful advice. I have been reading so much about Chiari lately that it seems as if it has become my new text of choice to read. I have read a few articles by dr oro and I’m very impressed with what he has to say! I don’t know if bringing in a bunch of information to my neurologist appointment will be of any help or if it would offend the neurologist. Bottom line is I won’t settle for one opinion and no doctor knows my body better then I do. I’m scheduled to see my orthopedic surgeon today because I have to have back surgery since my scoliosis is really bad and it continues to progressivly get worse, not to mention I have severe degenerative disc disease and arthritis in my joints. Where can I find a symptom check list for chiari? Every site I have been to only states what symptoms are common with chiari.

Abby said:

Rebekah, I know what your are talking about. My neurologist’s assistant told me, that I couldn’t possibly have a headache everyday. After the MRI, she was calling asking me what I needed. They are sometimes clueless. There are some sites and books that might help you, The Chiari Book, by Dr. John Oro and Diane Mueller, Contents under pressure, by Raphael D’Alonzo, and Conquer Chiari, by Rick Labuda. Rick is on my facebook as a friend. He is also really good to ask questions to. The websites to look under are Chiari one, and also, one that has questions to ask your doctor before you go and a symptoms lists to check off the ones your having to give to your doctor. This really helps him in order to know how symptomatic you are. Talk to as many chiarians as you can about the surgery and it will help you determine if you want to proceed with it. You will hear some good and bad ones. I do recommend that you take your time and be selective with your surgeon. Get a doctor who has a lot of experience with Chiari. The Top doctors in the US are Dr. Oro’, Dr. T. H. Milhorat, and Dr. DM Mueller in my opinion. I am sure there are others that are good, but those stick out in publications and articles I have read. The pegs are like peg in a bottle with no room for fluid to flow to and out. My tonsils are round in shape but sit on my brain stem. Sites you might want to look at are Chiari Symptoms,, World Arnold Chiari Malformation Association, Pam’s Hints, and Alleviate ACM Symptoms are very useful. You might type in peg like Chiari pictures, and check that one out, it is interesting to look at the difference in Chiari shapes. There is a site for what to ask your doctor on Chiari. I will have to look that one up for you. Again, if your on facebook, there are hundreds of us out there, and when you start finding Chiarians, we aren’t as rare as they say we are. I know a lady, who has not got chiari, but the gene came from her husband and their sons have Chiari. There is a study done in Durham, NC on genetics. The more you learn the more you can come back and know what to say. When you first are told, your are in so much shock you don’t know what to ask, but after you educate yourself, then you are better prepared to be your own voice. My husband always goes with me and asks a lot of questions. Good Answer, Awesome Abby

Good topic…

i thought " what does he know" i asked wether he has any experience in that issue, he said " ive had enough"

what answer is that,… ive changed NL now, lol

Hi All:

My own experience has been that EVERY NL I have seen in the past is clueless about Chiari…when they cannot even pronounce it correcty…i get nervous!!! LOL…

I truly think that 1 reason why there is not much research being done is that there is no cash to be made on it…what I mean is…the drug companies fund much of the research…in hopes to come up with a drug…$$$$$

just my opinion on that!

Anyway…My NS is well versed (I think, I hope!!) on Chiari…and I recently went to a neuro opthamologist who is very knowlegdable on it…NL’s have done nothing for me…except cost me $$$ , time and aggrivation!!