Nothing but frustration

I've been away for awhile. been dealing with bad headaches and neck pain everyday. in the past month I have been to the ER 5 times for uncontrollable pain. as I am typing this my head is pounding just took a percocet and valium and still in pain. I went to see my new neurologist today and he told me my headaches are from caffeine withdrawal. I wanted to punch him in the face. he told me that my chiari isn't that bad even thought my herniation last year was 3mm and now it's 9mm. this guy doesn't know anything about chiari. I waited a long time to see this guy and now I feel like it was a waste of time and energy. so now i'm back on the search for a new doctor again. it just never ends. he wouldn't even write me a script for my pain meds. He said I don't need them and to take 2 Aleve. If I don't take pain meds I won't be able to work or get out of bed. I should just quit my job now. Why is it that no one believes that this condition comes with chronic long term pain? I feel so defeated like i'll never get any help. my quality of life is circling the drain. I have to take off from work and run to the ER at least 3 times a month. this is no way to live.

Hi Francis,

Every Member understands the frustration you are rightfully feeling. I have lived on pain meds for 8 years. I cannot function without them. I came off narcotics because they messed up my sleep patterns. Sometimes I have wanted to "Gibbs Slap" doctors or shake them and ask them if they missed the day in Med School when they went over CM's. I don't understand any better than you do. My NS even wrote a nasty letter to an ENT that I saw & told me I needed to see a psychiatrist. That nothing was wrong with me. The ENT had been practicing for 30 years. I don't know what it will take to get physicians more educated and aware of CM & all our issues. I agree, this is no way to live....but it is the only way we can. Please let me know how you are doing. I read today only Chiarians can actually understand other Chiarians.


I am so sorry you had to go through that. Neurologists are useless when it comes to Chiari. They believe our symptoms are anecdotal. They do not understand. I know there are probably a few out there that aren't but most of them are utterly completely and absolutely useless. Neurosurgeons are the ones that are experts. Like the very wise ladies said need to find a ns that spectializes in Chiari. They will do the tests that you need and help you figure out your options. As far as meds go you will have much better luck if you can find a good PCP. Most NL don't want to stick their necks out and prescribe pain meds if that's what you need. Also most pain clinics also don't prescribe pain meds. They are usually there to do procedures like spine blocks ects... I don't mean to generalize but it will save you alot of humiliation, time and heart break. Finding a good PCP is also difficult but with research and appointments you should be able to find one where you live. I would make several appointments with different PCP so you don't have to wait a long time between appointments and suffer needlessly.

You are right this is no way to live and you deserve to be believed and helped. I hope that you find some answers soon. We are here for you anytime you need to vent.