Symptoms don't progress?

General
1

I finally saw a neurologist yesterday and he told me that symptoms don't progress. I cannot be just that much more hyperaware of my headaches and neck pain. I may have "toughed it out" before, but I never had a headache for 12 days before. He said that that may not have been a chiari symptom and there is no tests to see what is a chiari symptom or not. I know I'm not a hypochondriac as I am more apt to ignore things then be annoyed with taking the time (and money) to go to the doctors.

I actually liked this doctor but felt I once again I did not get any answers and basically my choices are live with it or get surgery.

What have you been told?

2

Betty,

I am very sorry your NL told you symptoms don't progress. They do progress before & after surgery.You are absolutely not a hypochondriac !!!! We don't have diagnostic tests for a lot of our symptoms. We do have however, have 900 Chiarians that have the same symptoms at one time or another. I recommend you find a new NL or NS. Don't suffer needlessly over a misinformed NL. Let us know if you have any questions.

Tracy Z.

3

My dad actually said i was a hypochondriac and thats why the dr's are doing this and ignoring symptoms. He told me that and i felt like crying. He said i'm only going on sites for it and deciding what symptoms i am having....wtf

4

I've had two NL tell me symptoms don't progress and in fact that Chiari type 1 has NO symptoms. So yeah...a lot of these "doctors" are idiots. I've been advised to keep trying until I find someone knowledgeable so I advise the same to you. Sorry you are going through this! Doctors need more education on chiari!

5

I am sorry Chris. We as Chiarians struggle so hard with finding educated medical personnel. I know it must hurt when your Dad doesn't understand. Know you can always come here and find understanding caring Members.

Big Red (since 2 Chris's :) ) said:

My dad actually said i was a hypochondriac and thats why the dr's are doing this and ignoring symptoms. He told me that and i felt like crying. He said i'm only going on sites for it and deciding what symptoms i am having....wtf

6

lol the doc doesnt know what he is saying, of cause it progesses,

also if not repaired it can leave permanant damage with the nerves,

my parents told me i was a drama queen, and have split personality, we all have times when our family/friends or anyone judges us,

the thing that gets me is, if you were making it up, why do you need or have had decompression or in their terms brain surgery, ummmm i the way i think that shows thats something is wrong and not to be taken lightly,

try not let it get to you, people can be horrible cause they dont understand it, but you know the truth and that is all that matters, hand the negitivty but to them, its not yours to carry.

i know it hurts, i had alot happen over the last few yrs, i dont have any contact with my family any more, their choice no mine, but sometimes you dont need the crap that goes along with it,

so when people talk to you and tell you its all in your head, just ignore it, they are the ones that dont understand and hard to accept that something is wrong, also some parents have a guilt thng going on, they can sometimes feel that they gave it to you,

it will be ok in the end.. :-)

7

Get a 2nd opinion!

Tradee

8

Just went threw what your going threw myself and I had a cousin of mine that had it as well and she gave me a number to get in contact with someone that knows what I'm going threw. Well seen him 2 days ago finally got MRI w/ CSF study done and he said you need the surgery. YES LIGHT AT THE END OF THE TUNNEL!!! But I have 4 small boys so right now I asked him to help me put it off til summer when I dont have to worry about the 2 different bus schedules in the day and afternoons. So compared to you have chronic migraines and Chiari doesn't cause your problems to this it was relief. Like Tradee30 said get a 2nd opinion its a battle but you gotta fight with everything you got your best dr is YOU!!!

9

Okay - for one... Chiari symptoms CAN progress, as good ole gravity itself can lead to worsening over time. So that makes no sense. It was WORSENING symptoms that caused me to finally go further than migraine help. It was to the point medicine just never touched the migraines or controlled them.

I know you can't always get a new doctor, but don't be disheartened. I think he's wrong, and frankly, you need to revisit it. Not having surgery is not a sentence to live forever in pain. Surgery is not always an option that will work in every case. See if he is willing to work to alleviate symptoms or find someone who will. Don't be pushed around! :-)

10

Thank you everyone who has answered. The underlying theme to most of these discussion boards seems to be that doctors aren't taking their patients seriously and they have a lot of conflicting advice. I am supposed to go back to him in 5 weeks and I wanted to start a pain journal but of course, I keep forgetting to write down when I experience pain and what I'm doing at the time.

I am just annoyed at this whole process and I feel badly about how many other people on here have much, much worse symptoms than I do.

I will keep plugging along...