Boo for brain mysteries
Donation protected
Brain cancer sucks. The following effects of intervention and treatment can suck. Complications suck. A long list of symptoms that aren’t assuredly matched up to a diagnosis…those suck. Both the daily misery of symptoms and the mystery of what is causing them.
This is my life, and I’m trying to make it not suck so much.
I had surgery in 2013 for a grade 2 astrocytoma in my left temporal lobe. Part of my brain was removed. Though the surgeon said cancer cells likely remain in my brain, this was a successful surgery and the tumor site has remained stable. It is expected to for at least another decade. Yay!
Though the brain tumor is stable, symptoms remain. Prior to surgery I had headaches and tinnitus (ringing in the ears). Since surgery these symptoms have significantly worsened and I've developed dizziness, hyperacusis (sensitivity to sounds), tremors, weakness, episodes of blurry vision and frequent change in sleep patterns.
I have difficulty going anywhere because the hyperacusis is so severe. I am wary of stairs and driving most of the time because of the frequent dizziness and weakness. Daily tasks are daunting, and my social life is limited.
So, what could be causing these symptoms? It could be a couple things…
A pineal cyst was also discovered and has grown from 10mm in 2013 to 15mm in 2019. The pineal gland is in the center of the brain. Pineal cysts are typically noted on radiology reports as incidental and it is widely accepted that they don’t cause symptoms unless they cause hydrocephalus. Some providers then only treat the hydrocephalus and do nothing about the cyst causing it. I don’t have hydrocephalus, and the doctors I’ve been working with assured me symptoms weren’t related to the cyst. So, they referred me to evaluate my ears since that is a likely cause of at least some of these symptoms.
In 2017 I had a CT scan that noted thinning of the bones in my ears, but not a true third window that would classify it as SSCD, a condition that can be treated with invasive surgery. Since the thinning wasn’t bad enough to risk such a surgery, I have tried vestibular therapy and Meclizine for the dizziness and sound therapy for the hyperacusis. The hyperacusis has improved some over the two years I've done the sound therapy but is far from resolved. Using earplugs makes the tinnitus worse, so it’s a big ol’ catch 22 that leaves me isolated.
Because I’ve been miserable for so long, and my doctors can’t seem to find an answer, I decided to do some research. Typically, I go to the National Center for Biotechnology Information (www.ncbi.nlm.nih.gov) to look at case studies because it’s reputable information and isn’t just some random Google search. I tried that, hence the realization that it is widely accepted that pineal cysts tend to not be messed with. A lot of people have them without noticing anything. But once I looked up anecdotal evidence regarding pineal cysts, I discovered there are a lot of people who do notice them. Get this...they complain of dizziness, headaches, vision changes and weakness. It’s not an answer to the hyperacusis, but it could be for everything else. There is a Neuro-surgeon in Texas who specializes in the treatment of pineal cysts; Dr. Dong Kim, who also happened to do Senator Gabby Giffords’ brain surgery after that traumatic event.
So this is where I need your help. I have a trip coming up to see Dr. Kim who might be able to help me figure at least some of these symptoms out. Because I have state insurance, I don’t have insurance coverage for this consult and procedure. On top of that, travel expenses are higher than usual because I need a day to recover from flying (noise, pressure changes=nasty headache) and a day to recover from the procedure, meaning a longer hotel stay. I am working with Social Security to find federal insurance that could be accepted in any state, but this takes time.
I see a lot more medical bills and travel expenses in my near future. I get enormous help from my family and close friends, but if you or someone you know can contribute anything to make this potential resolution to much of my misery possible, it would ease the financial burden on them and me.
If you can’t donate, please share.
Thank you
This is my life, and I’m trying to make it not suck so much.
I had surgery in 2013 for a grade 2 astrocytoma in my left temporal lobe. Part of my brain was removed. Though the surgeon said cancer cells likely remain in my brain, this was a successful surgery and the tumor site has remained stable. It is expected to for at least another decade. Yay!
Though the brain tumor is stable, symptoms remain. Prior to surgery I had headaches and tinnitus (ringing in the ears). Since surgery these symptoms have significantly worsened and I've developed dizziness, hyperacusis (sensitivity to sounds), tremors, weakness, episodes of blurry vision and frequent change in sleep patterns.
I have difficulty going anywhere because the hyperacusis is so severe. I am wary of stairs and driving most of the time because of the frequent dizziness and weakness. Daily tasks are daunting, and my social life is limited.
So, what could be causing these symptoms? It could be a couple things…
A pineal cyst was also discovered and has grown from 10mm in 2013 to 15mm in 2019. The pineal gland is in the center of the brain. Pineal cysts are typically noted on radiology reports as incidental and it is widely accepted that they don’t cause symptoms unless they cause hydrocephalus. Some providers then only treat the hydrocephalus and do nothing about the cyst causing it. I don’t have hydrocephalus, and the doctors I’ve been working with assured me symptoms weren’t related to the cyst. So, they referred me to evaluate my ears since that is a likely cause of at least some of these symptoms.
In 2017 I had a CT scan that noted thinning of the bones in my ears, but not a true third window that would classify it as SSCD, a condition that can be treated with invasive surgery. Since the thinning wasn’t bad enough to risk such a surgery, I have tried vestibular therapy and Meclizine for the dizziness and sound therapy for the hyperacusis. The hyperacusis has improved some over the two years I've done the sound therapy but is far from resolved. Using earplugs makes the tinnitus worse, so it’s a big ol’ catch 22 that leaves me isolated.
Because I’ve been miserable for so long, and my doctors can’t seem to find an answer, I decided to do some research. Typically, I go to the National Center for Biotechnology Information (www.ncbi.nlm.nih.gov) to look at case studies because it’s reputable information and isn’t just some random Google search. I tried that, hence the realization that it is widely accepted that pineal cysts tend to not be messed with. A lot of people have them without noticing anything. But once I looked up anecdotal evidence regarding pineal cysts, I discovered there are a lot of people who do notice them. Get this...they complain of dizziness, headaches, vision changes and weakness. It’s not an answer to the hyperacusis, but it could be for everything else. There is a Neuro-surgeon in Texas who specializes in the treatment of pineal cysts; Dr. Dong Kim, who also happened to do Senator Gabby Giffords’ brain surgery after that traumatic event.
So this is where I need your help. I have a trip coming up to see Dr. Kim who might be able to help me figure at least some of these symptoms out. Because I have state insurance, I don’t have insurance coverage for this consult and procedure. On top of that, travel expenses are higher than usual because I need a day to recover from flying (noise, pressure changes=nasty headache) and a day to recover from the procedure, meaning a longer hotel stay. I am working with Social Security to find federal insurance that could be accepted in any state, but this takes time.
I see a lot more medical bills and travel expenses in my near future. I get enormous help from my family and close friends, but if you or someone you know can contribute anything to make this potential resolution to much of my misery possible, it would ease the financial burden on them and me.
If you can’t donate, please share.
Thank you
Organizer
Shay Miles
Organizer
Kenmore, WA
