Frustrated, Advice Needed!

Hey all,

As some of you know, I am undiagnosed but had an MRI 6 years ago that showed low-lying cerebellar tonsils after blowing a pupil. My family doctor blew it off and nothing ever came of that. I've gotten progressively sicker and more symptomatic since then, with my doctor telling me the usual crap: "you're just too fat, lose weight", "it's all in your head", "you're 21, you're not having those kinds of symptoms", "get over yourself". In addition, she's incredibly demeaning and rude to me - I am obese, and she likes to poke my belly and laugh at me. She constantly tells me things like "no one will ever love you". However, there is a hugeeee doctor shortage in my town and I can't afford to lose my family physician.

I finally have an MRI date and it's not til June, but my parents are pretty convinced that Chiari is the problem here. So much so that my father is enraged (and he is the world's gentlest soul) and is planning to take legal action against my doctor if it shows up as Chiari. I'm trying to talk him out of it, but I don't know how to answer his questions.

If it had been properly dealt with 6 years ago, is there a chance I wouldn't be like this? Does the blame fall on my doctor, the radiologist who read the report or me? Is it normal for Chiari to go missed like this? How rare is this disorder cause his research is turning up that it's pretty common? My doctor is a terrible person, but if we sue, then I doubt anyone will ever treat me again (I live in Canada and suing is different here).

If anyone could help me out, I would greatly appreciate it. Wishing symptom free days on you all.

I think it is common for chiari to get missed. I don't think the disorder is as rare as once thought, I think it's just that MRI technology has allowed for more people to be diagnosed.

Mine was properly diagnosed on my MRIs but two neurologists have insisted that it is an incidental finding and not the cause of my symptoms. So now I'm fighting to find a doctor who will take me seriously. So I know you you feel getting blown off by your doctor.

I wish you good luck in getting a proper diagnoses AND treatment!

Wow…Your doctor sounds horrible! You do NOT deserve to be treated that way…no one does. I know you said there is a doctor shortage in your town, but is there any way you can start seeing someone else? Even if you had to go to a doctor in another town, I think it would be well worth it. Sadly, many doctors lack sufficient knowledge in Chiari. Chiari is not as rare as it was once thought to be. The use of MRIs has made Chiari easier to diagnose, but many radiologists classify a herniation of less than 5mm as an incidental finding. New research has shown that the size of the herniation doesn’t accurately determine if Chiari will be symptomatic or not. Some people have large herniations with no symptoms and other people with so called small herniations can be very symptomatic. A knowledgable doctor will factor in your symptoms and quality of life. The NS that diagnosed me said that my herniation and syrinx were too small to cause me any problems. Since then, I have gotten significantly worse, so he was obviously wrong. I highly recommend that you see a NS that specializes in Chiari. There are lists of patient recommended doctors…you can find links on our resources page and doctors page. You may need to travel out of your area to see a recommended doctor, but from what I’ve heard it is well worth it. I live in Vancouver, WA and I’m driving up to Seattle to see Dr. Ellenbogen on April 30th. I hope this helps and you get the care you need and deserve soon.

Mine is 8mm and still being disregarded! :(

Anglyn- You should see a Neurosurgeon that is experienced with Chiari too. Like I told Lissa, there are lists of patient recommended doctors…you should check it out. I hope you get the care you need soon too:)

I had 3 scans in the last 5-6 years… ALL showed my herniation (20mm)
Only my last mri did a REAL neurologist diagnose me… so yea it happens… do i want to report all the doctors calling me fat\anxious\depressed for best part of my life… too right i do… i said to the GP who read my letter out from neurologist " why didnt no one see it before " and he sat and repeated what i said in a childish manner… and i broke down. sickend by years of being told weight was my issue also… and i was anxious because of it LOL what…

I am going back to the GP next week… i have written a well worded essay to tell him… and i hope he feels like **** when he hears what I have to go through for the rest of my life and how they pushed me off for years…

Next time she says no one will love u… say its ok… there are plenty of cats out there to adopt Haha

Throw a puppy in there to with the kittys lol

No Dr has the right to treat you like that. I would go and try to find another dr asap and I would beware taking your dad with you to her lol he may end up in jail even though if someone treated my daughter like that...god help them!!

You need to get your records and find a nl that is knowledgeable.