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Swallowing problems

I was diagnosed with Chiari 1 with syrinx in 2009, Had PFD surgery in 2010 by a top NS but unfortunately not a Chiari expert. recovery was long with spinal fluid leak and chemical meningitis. I feel much worse post surgery than I did prior to. Recently I went to TCI and Dr B is recommending PFD revision/ Fusion and section of the OTC. Considering the very difficult surgery the first time, I am in the weighing the risks vs benefit.

So here are my questions for tonight:-)
I have noticed several people have mentioned swallowing "issues" with Chiari. I am curious what problems they are having or have had and if that particular symptom has gotten better after PFD/fusion

Also, I would love to hear about anyone's experience who had surgery at TCI and how they are feeling now

Thanks so much! This forum has been a well of information!
3 Responses
620923 tn?1452915648
COMMUNITY LEADER

  Hi....I had surgery at TCI...Dr B was in the OR, but was not my NS, I had Dr Salvatore Insinga and both my DH and I loved him...I am so much better then I was b4 surgery...no set backs but I do have other related conditions so I still have symptoms and issues from them.

As for my more severe issues gone....swallowing issues, gone....

My one thing was ne time I would laugh, I would start to gag, then choke, to the point of almost and sometimes vomiting....and that would really make my head hurt.

I do not have that ne more either...my other swallowing issues were not all fluids I swallowed when down...some would remain in my mouth and I was unaware until I went to drink more....that was weird more then a swallowing issue.

The issues with my neck that it was over sensitive and I could not stand nething on or around it, gone....

Ur issues are they from a related condition not DX'd b4 ur first surgery, like ehlers-danlos? Netime u have surgery and do not know ALL that is going on u can feel worse due to these other underlying conditions.

May I ask what TCI said was causing ur issues, since u said fusion, I am assuming CCI and EDS.
Avatar universal
TCI ruled out EDS. I do have cervical instability as a result of the first surgery. They say that the first surgery was just incomplete, it didn't relieve the tonsil crowding or the CSF blockage being the reason the symptoms have gotten worse and the syrinx has grown some. Also, they determined I have OTC and that is contributing to syrinx not resolving as well.

The swallowing issues I experience are that I have a difficult time swallowing everything down, like its ineffective. Some liquid stays in my mouth as you said. I do frequently get choked and I aspirate. Also if I drink anything carbonated, it bubbles right back up my esophagus, not vomiting or burping, just bubbling foam.... Strange. Sometimes I do feel like things get stuck and have thought maybe this isn't Chiari related but hard to know. Last, sometimes it's like I forget how to swallow. It's like I'm trying to swallow but the mechanics just don't come together and and I sit there with my mouthful until it all kicks In and the swallow occurs. These all seem so strange so wondering if anyone else has experienced anything like this.
Avatar universal
Hi, I too had scary swallowing issues for weeks, where I couldn't get solids down. That seems to have resolved for myself. & I am awaiting my cine MRI in feb 2014. My NL said if swallowing got scary again, for me to go to ER. Just be careful. Good luck to you, hope you will be getting help soon.
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