Has anyone experienced this kind of swallowing difficulty?

[Seraphinaxx]

I don't know if I have Chiari Malformation, but I've reached the point of desperation where you look for anything that matches the bulk of your symptoms and take it to your doctor.

I haven't eaten a solid meal in 8 months now. Last November I began experiencing a strange sensation where certain foods (particularly ones that broke into small pieces) would move to the back of my mouth before I felt ready to swallow and I would feel like I wasn't sure if I'd be able to swallow or not. This would happen periodically, usually toward the end of the day. Then in January, after a meal, I was eating some chocolate and suddenly felt very strongly I wouldn't be able to swallow it. I had no idea why, I just felt like I couldn't. I ended up trying anyway and the result was (what I've now come to refer to it as) an uncoordinated swallow where it felt like my esophagus stayed open for a few seconds while the chocolate slowly moved into it and I couldn't finish my swallow. I panicked. Ever since that experience I've had an extremely difficult time swallowing anything, including my saliva.

I went to the ER, had an endoscopy, and my GI said everything looked fine and referred me to a neurologist. I had extensive testing for myasthenia gravis, ruled out other major neuromuscular and neurological diseases like Parkinson's and ALS. I have Hashimoto's Thyroiditis but my doctor told me that seemed under control and shouldn't be the cause. I've had a modified barium swallow, an MRI to check for MS, a CT of my neck to check my thyroid and every doctor has chalked it up to anxiety and sent me to a therapist and a speech pathologist.

I also started experiencing terrible pain in the base of my skull that would spread into my ears and down my neck. It worsens if I do any relatively strenuous physical activity, get too excited and smile/laugh too much, or I just randomly wake up with headaches. So I thought it could possibly be my jaw. I started seeing a TMJ specialist and am currently using an appliance that is allowing my jaw to correct itself, but no one seems convinced my jaw alone would be causing the severity of swallowing difficulty.

Even after months of therapy (I have greatly improved my anxiety without any improvement to the swallowing), and months using the mouth appliance, it's a good day for me if I can consume 3 Boosts and a milkshake without too much mental effort.

I guess my whole point is: I have a lot of symptoms of Chiari's the more I read, but has anyone who actually has it experienced trouble with the actual initiation of swallowing? And experienced it consistently? Where you move food around in your mouth and go to swallow it but something just feels off and you feel like you just know you can't?  For me, I can only drink liquids now and I end up swishing it around trying to coordinate my mouth, and concentrate really hard to do so, until I get an inexplicable feeling (accompanied by a weird sense of knowledge) that this time I'll be able to move it all the way back and swallow. It's much easier to drink through a straw too, I think because it takes less movement and coordination. I can't seem to find any information or anyone who can relate to what I'm experiencing. And I just can't see it being only anxiety with the improvements I've made in that area and the fact that anxiety medications don't change a thing. I can't get any doctor to believe that either.

Anyone who could share their experience or offer any words of advice, anything, it would be deeply appreciated.

[selmaS]

  Hi and welcome to the Chiari forum.

We all may have differing degrees of similar issues....I did have swallowing issues but not like yours....I would gag from time to time or after taking a sip of water and then after some time , lifting the glass for another sip realized I did not swallow all of the water after the last sip....I did this many times and not sure why,,I know it is not the same thing but if you do have Chiari it could be related due to the way our spinal cord and brain stem are compromised.

I had a swallow study done and nothing conclusive was found.....post op of the PFD surgery I no longer have those issues.