Mouth symptoms

[jvilletina2]

Several times a week I will suddenly notice that the far back part of my tongue on the left side is all bitten and swollen. It's so "chewed up" that it's hard for me to talk for hours afterwards. I must be biting it but I've never felt it.

I also have recurring line on the inside of my cheeks where my teeth must chew into my cheeks during the night.

Occasionally it feels like the inside of my throat just seizes up as I try to drink a glass of water quickly. Quite painful.

Any one else out there like me?

It is comforting to be able to ask these absurd questions and know that I will be taken seriously - thanks everyone!
Tina

[jvilletina2]

I know what you mean and my symptoms aren't as severe or noticeable as yours. Nearly all the people that knew I had surgery last year just assume I'm now "cured". It takes so long to tell that side of things too. AND my brain struggles to find the right words too. I'm noticing that I don't always type what I'm thinking either. As though there is another disconnect between brain and fingers. I used to be an excellent typist.

Maybe we need to develop an "elevator speech" just like you're meant to have to describe your job or your product if you're in sales. A short and sweet explanation that we don't have to think about. You guys have probably already done this.

I swallowed two cherry pits and a small plum stone today without realizing it before it was too late. Wouldn't this be the opposite of the normal Chiari swallowing issues though??
Fingers crossed that they pass through ok . . .

[*Stormy*]

Yeah..most of the time I will call it a condition too but like Shannon says, a lot of people don't understand that it is still affecting you. To tell you the truth...I find it really hard to find the right words at all...I can't avoid it b/c I still walk with a limp and so as soon as I have to walk for a period of time..people notice.

It's a little frustrating actually b/c if I go to my sons preschool class and get there on my own, in a close vicinity you can't really tell. Then, when we go to walk to the gym, at least one or two new ppl notice everytime and I can just see their expressions change and then it's the "oh did you hurt your leg?" Then I have to explain..no I am always like this..you just don't notice it when I'm not walking a lot... It is horrible as I struggle for words to get it out and it NEVER comes out right (you think I would be getting used to it). It's like..how can you describe all that has happened and the effects of that in one sentence?

If anyone has any suggestions...I'm all ears...

Carolyn

[shanmomof3]

We had a thread somewhere where we all discussed that Tina. I think its just up to the individual. For me it depends on who i'm talking to lol most of the time i call it a brain condition, but if someone is just not getting how serious it is I will call it a disease so they understand how severe it is. Oh, and i get the choking and chewed up cheeks too. And like carolyn I have NO gag reflex! Blessings ~ Shannon

[jvilletina2]

Thanks everyone. This is the wildest "condition" . . .
how do you refer to Chiari in this context: disease, condition, illness??? "Malformation" doesn't mean anything to the average joe.

Tina

[*Stormy*]

Jackie...yes that sounds like what happens to me...sometimes my throat just decides it won't...and tries to reject things going down.

gmaldonado..the throat spasms are such are hard things to describe but it's sort of like a twitch and a flutter together...and for some reason it makes me catch my breath. That's why for awhile I wondered if it was my heart or a bronchial tube or something spasming..but all those things checked out. I really think that it is actually the fine muscles that hold the cartilage together that are spasming..

[selmaS]

Hi Jackie...I am sure we may all describe how it feels a bit differently, but, something is obstructing the normal swallowing function....

I sometimes gag on my own saliva....it is weird...justs random out of the blue...

"selma"