Squamous cell carcinoma in Infraorbital nerve-removed

Posted by kathyheidt @kathyheidt, Jul 7 11:43am

Hi,
I had my infraorbital nerve removed with my infrastructure maxillectomy in May. I am having a hard time adjusting to the loss of feeling from my eyelid to my lip. Has anyone else experienced this and how did you cope?
Much thanks

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Hi there

I had surgery for salivary duct and lost my facial nerve. I have weight in lid. It’s a weird feeling of numbness. I’m now 2 years out. Most days it’s okay but on others (if stressed) it feels like I have a weight on the right side. Numbness in my right tongue is constant. It also makes kissing weird 🤣

It was much harder to ignore on the first year but your brain kind of adjusts (for the most part).

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@clevyjam

Hi there

I had surgery for salivary duct and lost my facial nerve. I have weight in lid. It’s a weird feeling of numbness. I’m now 2 years out. Most days it’s okay but on others (if stressed) it feels like I have a weight on the right side. Numbness in my right tongue is constant. It also makes kissing weird 🤣

It was much harder to ignore on the first year but your brain kind of adjusts (for the most part).

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Thank you. Did you ever get used to it and in general, did the tightness, weight feeling, numbness ever go away or subside?
So frustrated

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@kathyheidt

Thank you. Did you ever get used to it and in general, did the tightness, weight feeling, numbness ever go away or subside?
So frustrated

Jump to this post

Hi
Not used to it really. Just sometimes if I’m busy it’s not as present. No the tightness, numbness and weight feeling has not changed. I also have hearing loss on that side and constant tinnitus.

It’s difficult because you try to be grateful for being alive but quality of life is diminished. Radiation is the gift that keeps on giving. I think the second treatment to the same area, after recurrence) is why it’s worse this time.

Good days mood wise for the most part. But there are some days it feels overwhelmingly. I am hopeful that with time I’ll embrace/accept the new me.

The one thing I miss really deeply is smiling rather than looking like I’m grimacing.🤣

Hang in there. I’m much better mentally than o was a year ago so figure that will continue to happen.

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I think we are one of the few with the exact same issues. I lost some hearing on that side and constant tinnitus! I am in the same position on the feeling and acceptance and hope some day I can accept it and be grateful. I am not at the one year mark but hope to come to grips. Thank you again for reaching out

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