New Member: I am so grateful this... - The Brain Tumour ...

The Brain Tumour Charity

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MimiSpree profile image
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I am so grateful this forum is here. I was diagnosed with an Acoustic Neuroma, but after my surgery the doctors told me I have a brain stem tumor. Most of it was resectioned, but the surgery left me with right-sided facial paralysis, deafness, and a spinning and bobbing world. Seven years later the tumor is growing, but I am not concerned as I accept my situation. However, as with everyone, the isolation is tough, especially at a time when you want to make the most of life. Relationships are tough, planning is tough, working is a challenge, cleaning my house is impossible, getting a haircut in front of a mirror is undoable, laughing is the best medicine, acceptance is the key, and not defining myself by my physical circumstances is everything. But, I know I can't do it alone, so I am grateful I found you. Thank you.

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MimiSpree
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Zubi1 profile image
Zubi1

MimiSpree: Greeting Ma'am,

After reading about your condition it has really moved me. And I'm really sorry for what you have been through. I would like to share some of my experiences with you after tumor resection. To date, after almost 1 and a half years of my surgery, I haven't experienced anything bad or any repercussions, in fact my condition has improved. I just want to stick to one sentence of my physiotherapist told me, "try 120% and you will achieve 100%" and it did work for me, I did physiotherapy religiously and it really improved my muscle weakness but, unfortunately, I couldn't see my PT regularly since I was unemployed all along since my surgery. Last week, I was able to find myself an employment. Now, my utmost goal is to see my PT regularly and I'm sure it will get cured. Thanks!

Hello MimiSpree, I can understand your concerns as I also dealing with difficultly with managing fatigue and pain. I had been feeling isolated myself with diet restrictions and not knowing who to connect with my concerns. Hope your are well and to remember setting small goals will help with mental health.

MimiSpree profile image
MimiSpree in reply to

Thank you Fleur. How is your struggle with isolation?

:). Mainly it due to going to keto diet since I am unable to eat any high carb foods since it will worsen my brain condition. I haven’t found anyone in my age group that is currently dealing with similar obstacles so i been feeling alone and scared. I lost my mom when i was sixteen so i been advocating for my needs for a very long time.

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