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

[chiarigirl11]

oh my god! i thought i was the only one....like when my friends ssay hey you wanna go play some basketball/football....or any sport..obviously i cant so then i have to go into a huge story because i say oh sorry i cant and then they ask why and im just like i have a brain thing...and there like ohhh what and i go chiarimalformation then i have to go into a story.,..such a pain ! its interesting when people actually ask me...are you gunna die from that? and im just like oh thats a  nice question to ask...

[*Stormy*]

LOL Ray...maybe I should just try the short and sweet version...sometimes I have this need to over explain everything... you know like if you had MS..you could just say that and everyone would understand. But Chiari...they look at you with a blank expression on their face!

Tina..I do the typing thing too..I am always substituting the wrong words than what I am thinking..I have to reread everything or it makes no sense!! It's funny usually when I reread it I can catch it though..makes me worried b/c to go back to school, I have to pass another typing test.
Like Shannon said..if you have an absent gag reflex..that is very common to happen. It causes the muscle to go slack near the back of your throat so it is not constricted like it should be and things just slide on down....I don't know how many times I have choked..it's scary. I have to tell myself to chew, chew, chew..I actually noticed that I felt like I had to chew more b4 I knew about the gag reflex issues...so obviously somewhere in my subconscious it detected it..
Another thing I find weird..is when I want to swallow sometimes I have to wait until I feel the urge (like trying to swallow a pill) but then other times I swallow prematurely b4 I am ready..and that's when I feel the danger of choking.

Selma...I was just drinking my coffee as I type this...and I do hold some in too..I sort of half swallow!!

Neava...they thought I had MS too and that was their only focus..which is why the Chiari was missed the first time around..Lately I have been biting the front of my lip too..that came after my mouth feeling "weird"..

Shannon...take heart, I totally know what you are going through now. Even my family did it..I think they all wanted to believe I would be cured. Finally, I just told them straight out how it was and that things were not going to snap back in place that quickly. I still have to remind then now..when I'm not getting enough help and everyone is leaving everything up to mom. As for outside people..I figure they can believe what they want..it doesn't change how I feel. At 3 weeks, I can still remember how awful I felt..so make sure you are getting your rest :)

Carolyn

[rod44]

Hi Carolyn, I usually tell people I have a neurological condition ........... and if that dont work I tell them to mind their own business lol.  


Ray

[shanmomof3]

oh, and selma i do that too i just didnt realize i did lol after i read through this again i went and took a drink and i have to swallow twice to get it all down - wierd! And i'm havin the same problem with people thinking my problem is "fixed" since i had surgery. Monday will be 3 weeks post op and everyone that has come to see me this week is like, "you dont even look like you had surgery and your walking so much better!" which i am walking A LOT better but i want to scream its only been 3 weeks people! Sorry for the tangent i just get frustrated. Since people dont understand chiari they dont or dont want to understand how serious it is!

[shanmomof3]

Tina, do you have a gag reflex? If you dont that is the reason you swallow things you shouldn't or didnt mean to. It has happened to me several times, usually with a piece of bread or meat that was too big and i didnt mean for it to go down but it did and then i end up choking :( its to the point now that i cut my food up really small like i'm fixing it for my youngest child lol but kinda sad

[neava]

hi

i also do that, i never thought about it being part of chiari, i sometimes end up with blood plisters on the inside of cheeks,

i gag and have trouble eating and drinking sometimes, i thought it was me being a pig, lol

my doc thought it was a MS symtom (thats when they thought i had that) but OMG its fits in with everyone else,