Hello everyone. My name is Guzel, I am 29 years old. In May 2026, I underwent surgery to remove a large vagal neurofibroma extending into the jugular foramen. During the resection, my left vagus nerve (10th) was transected, and my 9th, 11th, and 12th cranial nerves suffered severe trauma.

For the past 4 months, I have been dealing with severe dysphagia. I cannot swallow at all, not even my own saliva, and I am 100% dependent on a PEG tube for feeding. I also have left vocal cord paralysis.

We are currently planning a complex surgery (non-selective laryngeal reinnervation combined with cricopharyngeal myotomy) with Prof. Kate Heathcote in London to hopefully restore my swallowing mechanism.

Since large tumors in this area often share similar surgical complications, I wanted to ask this community: has anyone here experienced similar severe lower cranial nerve deficits (especially the 9th and 10th nerves)? Has anyone undergone laryngeal reinnervation and myotomy?

I would be incredibly grateful to hear about your recovery journeys, how you cope with the constant saliva pooling, and any advice on swallowing rehabilitation.

Thank you in advance for your support.

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Hi Guzel,
I am sorry to hear of your swallowing issues.  I waited to respond to see if anyone with a similar issue that bad could offer support or guidance.  I can only relate in a very small manner.  7 times before my surgery I had episodes where the only way I could describe it was it felt like my throat muscles forgot how to swallow.  For me it was always temporary but very frightening.  I remember thinking the first time that I was going to die, before I realized I was still breathing normally.  I can't imagine what it must be like for that to be the normal.   For me my I think my surgery resolved the issue, I say I think because my surgery actually came with a complication that was a severe throat infection, and a liquid diet for a while along with therapy exercises and a follow up with a "swallowing clinic" at Hopkins.   After all that I have not had swallowing issues again.  But mine was never as severe as yours, so I hope you get some answers from someone with more experience with this than me.  I just wanted to let you know that I read your story, and although I can't help with your specific issue, don't let that stop you from posting your story or your future experiences.  You never know who else out there might go through the same thing sometime and feel like they are the only one to feel that way.   Good luck with your treatment, and please keep us updated.

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Guzel,

I am sorry for your issues.  I have no experiences similar to yours. I will offer you my thoughts and prayers and wish you good luck on your journey. 

Dan

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Dan Fouratt             65 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23            
MRI 6/14/24            7mm x 12 mm
MRI 3/17/26            6 mm x 10 mm