Swallowing Problems and Biting Tongue???

[NicoleAdia]

I've always heard swallowing problems are part of Chiari. I'm wondering when I should become concerned? I definitely have noticed myself choking more. The most alarming situation is when I'm chewing gum/eating chocolate or juicy fruits that cause excess saliva or random liquid to slide down the back of my throat. My swallowing reflex just starts going uncontrollably and I can't breathe! It's so weird, but definitely freaks me out. The only way to get it to stop is to drink water or cough. I've also noticed I've been biting my tongue REALLY bad lately-it gets bruised and bleeds for hours. It's almost like it doesn't move out of the way in time when I'm chewing-something that should be automatic?! Should I be concerned? What sort of doctor would I even look into for this? Is this normal/consistent with Chiari or EDS?

[selmaS]

Hi...yes swallow ing issues do show up in those of us with Chiari and routine swallow tests do not reveal anything helpful since it is not physical but neurological....I had issues where I would take a sip of water/juice and never swallowed it all and never realized it until I went to take another sip....
Many of our autonaomic system does not respond well.....when CSF flow is disrupted it can cause many of our autonaomic  responces to be interuppted.
Drop attacks are one issue we can have due to the CSF flow being blocked....breathing issues.....the list is pretty long.
Have you had surgery.....sorry I know you have posted before but I can not recall your history.

[NicoleAdia]

I have not had surgery. Headaches have decreased a lot and realized a lot of my symptoms are from EDS/POTS/possible MCAS. This is the only new thing that has started concerning me. I've had some vision problems which I know could be related, but my neurologist was no help so I just gave up investigating those. I'm just concerned with swallowing problems being a possible sign of chiari symptoms declining?! I guess it's just another thing to live with??

[selmaS]

When have you had a MRI last? A CINE MRI? that would indicate changes......and since you have new symptoms you should have a new MRI if it is 6 months or longer since your last one.

[NicoleAdia]

I had an MRA a few months ago with some vision problems and they were concerned about blood vessels. But I'm thinking the last CINE MRI would have been several years ago. All my headache symptoms have decreased though so I've been focusing on EDS/POTS stuff. Maybe I should see a neurologist. Sadly, I need to change because mine has a very ignorant view of Chiari (says no way any vision problems are from Chiari, etc.) and I have no idea where to start looking! Thanks for your input!!

[selmaS]

May I ask where you are located? Maybe we can help you find a different Dr?
Sometimes the symptoms cycle so it is possible for the headaches to appear better for a time....but with any changes all the testing should be done.

Your angiography would have been focused on your eyes? It may not have shown anything with the cerebral tonsils.....so a MRI might be in order too......not sure what the Drs or INS would say.
A NL is the one to DX you and a NS only uses surgery to help treat this condition.....so yes a NL is who you need to see next, however we only list NS's  ...BUT they tend to have a NL work with them so, I would deffinately consult witih a NS's NL  to see what is your next best course of action.