Chiari Online Support Group

All these symptoms from only 4 mm?

So I went to neurosurgeon that specializes in Chiari at the beginning of June. He wanted all new MRIs so down the road I went for those. Went directly back to his office to receive results and he told me that my tonsils were low lying but nothing that warranted surgery at this point. Received actual reading of MRI from radiologist and it shows that I am at 4mm. Really all my symptoms and 4mm but I don’t warrant surgery. My friend told me to get another opinion because it wasn’t his brain falling out of his head. I am going crazy with these doctors feeling it has to be 5mm or lower to cause any problems. Wish one of them could walk less than a mile in my shoes and they would never feel that way again. I was just told by the above neurosurgeon that visited with me for less than 5 minutes to go to a pain doctor. I am so frustrated!!!

Nanek - I hear you loud and clear. I’m kind of in the same position as you. Symptoms most of my life (I’m now in my 60’s). Didn’t know about chiari until 2 years ago when a borderline chiari showed on my MRI. This was my approximately 6th MRI/ct scan over 20 years and none other mentioned it. It’s borderline so doctors have disregarded it. I have no idea of the actual size. My neurological symptoms are all over the place, vertigo, dizziness, dysphagia, difficulty walking, insomnia, hyperacusis, problems that don’t have a name and that doctors have never even heard of. They don’t know what to say or do so they scratch their head, tell me it’s migraine and send me on my way. At this point I don’t want surgery, I just want acknowledgement that I do have a chiari malformation and it is probably the cause of my problem.

I truly understand your frustration with your doctor and wish I had a good answer to help you get the help that is needed and the way to get a doctor to listen to you and take you seriously. Dealing with medical professionals in this day and age is so frustrating. A five minute visit with a doctor isn’t helpful at all. Sounds like the one you saw goes by the books, 5mm is the cut off and there is no discussion if it is any different. Most doctors don’t like to be questioned and they certainly don’t like it if we take something from the web to them. (I hate it when I feel like I know more than the doctor.) I do hope you will get a second opinion from another doctor. Have you joined any Facebook groups for Chiari? They may be able to recommend a doctor in your area.

Hey so sorry to hear about your frustrations as well. Your symptoms sound spot on. To bad we all can’t just doctor each other since we know the craziness in our bodies. I do plan on getting a second opinion, but I am not sure which doctor I will go to. I live in a smaller town in Texas and all of the great clinics are states away, so not sure if my Medicare would cover the visit. I haven’t thought about Facebook, but thank you for the suggestion.

I suggest you fight till you get the diagnosis, but just know with the actual diagnosis comes a whole new set of problems. Most doctors don’t believe the diagnosis so then your just stuck in a catch 22. I will keep you in my thoughts and prayers.