Any brain tumor survivors?

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I just made an account, so I'm sorry if this isn't in the right place.

Less than a year ago I was diagnosed with an acoustic neuroma at age 27. It was removed just under 11 months ago. It took out half my hearing and balance, caused double vision, facial paralysis, and some numbness. Luckily my swallowing nerve was left intact (many people with ANs my size are unable to swallow well and have to use feeding tubes), but in the last year I've put on 30 pounds. I sure wasn't svelte to begin with but this has really messed up my confidence. I already feel ugly when I look in the mirror and see my face (I was a level 6 facial palsy for seven months and right now I'm about a 3-4). I'm sure the heavy steroids I've been on to combat brain swelling haven't helped, but most of my weight gain is from inactivity and stress eating. I worked for a long time this year to rebuild my balance and stamina, but it's hard to relate to people in my age group who never had to deal with any serious health issues.

Most people with tumors my size have trouble swallowing and standing up. I know I'm lucky not to have to deal with those issues as they can be life and safety threatening, but it's hard when I had once been able to do so much more.

I'm interested in connecting with people who have some experience with this issue or similar ones. I hope I'm not breaking any forum etiquette but I didn't feel like lurking for a while before I got some support.

Thanks for reading.

Replies

  • awholenewworld
    awholenewworld Posts: 61 Member
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    I'm not a brain tumor survivor but I am a stroke survivor. I had an absolutely massive stroke that should have been deadly at 19 years old and I have a lot of the same symptoms as you. Thankfully over time most of my symptoms have lessened or gone completely. It is really hard being affected by something out of your control that affects you so badly.