Hello, I have been trying to find a support group for people like me…After a skull base paraganglioma removal surgery I have disfagia and disfasia, can't swallow and my voice was gone. Still don't know if these will be permanent or will recover. Having 2 hours of swallowing daily.
I have a Gtube since Dec and have been through an emotionally rollercoast since then. Loosing the ability to eat means loosing social life in many aspects. I feel I wont be able to eat again, even though I should do but cant see the light at the end of the tunnel.
The formulas were a disaster to me, ended up vomiting and feeling bloated so I started a blending diet some weeks ago. I feel and tolerate food much better but it is very complicated because I have to do the diet everyday, feed myself 5 times a day, feed myself even if I am not hungry.
So…anyone feeling similar ??
I hope we can support each other