THIS IS THE YEAR!! Fingers (and toes) crossed!
To those of you who are familiar with my story and to those of you who may be new here, welcome! This is why we're here...
On February 18, 2021, I was diagnosed with an Acoustic Neuroma brain tumor. It was medium in size, growing on multiple cranial nerves, and pressing on my brain stem. On June 30, 2021, I had (Retrosigmoid) brain surgery at UCSF. On October 6, 2021, I had Gamma Knife Radiosurgery (also at UCSF) to treat the remainder of my tumor that was left behind. During my craniotomy, I lost all hearing in my right ear.
On April 18, 2023, I had a second craniotomy (MVD) in hopes of treating the severe/chronic trigeminal neuralgia that started shortly after my first craniotomy in 2021. Unfortunately, the MVD surgery was unsuccessful because there were no compressions found on my trigeminal nerve.
In December 2023, my neurosurgeon told me that my trigeminal nerve was damaged and probably has been damaged for the past 2 + years, which is why my chronic pain has been so severe. He said that, unfortunately, there was nothing more he could do surgically because it would only cause additional damage to the nerve.
My neurologist, pain management doctor, and primary doctor all agreed about the trigeminal neuropathy diagnosis made by my neurosurgeon. It made sense to me as well.
Anyway, It has been a pretty rough 3 years between my surgeries/recovery from them and my chronic nerve pain conditions(TN/ON).
In 2021, when I first learned that the National Brain Tumor Society had been putting on these walks all over the country (but specifically here), I was only able to support virtually. The year that followed, I was in such bad shape that I told myself, "Next year, I'll be feeling better, and I'll be on the ground, walking, and supporting in person!" That year came around, but my pain was still so bad I was barely getting out of bed to go to the bathroom, so I told myself again, "Oh next year, I'll be better, and I'll make it for sure!"
Well, here we are. This year will be my fourth go at it, and even though my pain is still very present, I feel like I might actually be able to TRY and want to do the walk anyway. Soooo, I've registered to walk in person in June at the Northern California Brain Tumor Walk that’s being held at the SF Zoo.
By bringing awareness to brain tumors, we are helping to get closer to a cure. Research is critical! So please, donate if you can. Absolutely no amount is too small. If you aren't able to donate, please send some good juju my way. I will definitely need it. My hope is that I can push through whatever challenges I may face during this walk because I know it's going to be difficult. You may be thinking 'walking through a zoo is going to be so easy' (and it was prior to 3 years ago), but most days, I can't even get up and walk to the bathroom without my pain being triggered, so this is a big deal, for me folks!
Thank you in advance for your support. Feel free to ask any questions you may have and please share!
National Brain Tumor Society is fiercely committed to finding a cure for brain tumors. They are aggressively driving strategic research; advocating for public policies that meet the critical needs of the brain tumor community; and providing comprehensive patient, family and caregiver resources. Your support ensures this important work will continue.
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