Chiari Online Support Group

Classification?


#1

i was talking with a few friends and i find it hard to actually give chiari a classification, meaning when you are discussing chiari and the onset of symptoms, do you say when i got sick? is it an illness or a disease? or as in my case a birth defect- but then again saying when my birthdefect reared its ugly head or anything similar just doesnt sound right either, So i was wondering how others classify this?

*been meaning to ask this question for the last week, today i fianlly remembered what i wanted to say LMAO

~Lisa


#2

Lisa:

I personally think of Chiari as a chronic condition once I became symptomatic. Even though I had surgery and have had some good results..some sx's still are bothersome.

Just my take..Have a good day.

Blessings,

Lori


#3

Lisa,

I totally agree with Lori. Until I came here I was call it my "episodes". But I have also found dr.'s who have actually heard of it calling it a Chronic Condition. It is a very serious condition and even with surgery some symptoms may never go away. I just recently found this out a couple of days ago and was shocked needless to say. I truely thought I would have surgery and everything would be fixed. There could be a chance for symptoms to return or to never go away. Someone here used to call it a "Progressive Neurological Disorder". No matter what label we give it, it is a life changing diagnosis. Good Luck!!

Much Love and Blessings,

Crystal


#4

Well my Boyfriend likes to call it droopy brain lol. When People ask me I tell them I have a condition called Chiari Malformation and wait for the puzzled look on their face.


#5

Hi all,

I agree on the chronic condition and I also refer to it as a serious neurological disorder. It doesn't really fall into the disease category, but more a disorder or condition which can be a birth defect or acquired. I think the "progressive" part comes in if there is no treatment for it and a person allows it to get so bad that they have few choices left for treatment. There are not many options as it is, but hopefully, some day we will all be able to say I "used" to have Chiari, instead of I "have" Chiari, right? LOL! There are some printable handout type materials on www.conquerchiari.org that are helpful when talking to others about Chiari. There are also handouts to print that you can give to other healthcare professionals when you meet with them. I have even taken this material to my dentist so that he is aware of what I am dealing with. My PCP also has copies of these things in my file in his office.

Carla


#6

I just tell people that my brain is too big to contain because when you tell people that you have ACM I they just look at you like they are confused and it is getting to be tiresome to try to explain it to everyone.I think that I am just going to start carrying around the info sheets to hand out to people when they ask me about my surgery. Technically it is a congenital defect that happens for some unknown reason. So I guess that you just tell people when you were first diagnosed or first started having symptoms.