Brain Tumor Surgery - Journey to Ohio
Spende geschützt
Hi All - Thank you for taking the time to read about my cousin's journey these past few years. I was planning on writing a snippet but decided to have her share her story with you all. All donations received from this campaign will go directly to her medical expenses and lodging while in Ohio for her surgery.
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It started with tingling fingers in late 2016, this sensation, coupled with a burning feeling, traveled up my arm, shoulder, and neck. I began dropping things, losing dexterity of my fingers, experienced stiffness and a loss of range of motion in my neck. I also began to lose feeling in my face.
It was several months before I could get an appointment with a neurologist and it took nearly 6 months to be taken seriously and get an MRI. Prior to this, I was diagnosed with very mild carpal tunnel and essential tremor disorder.
I was advised by the radiologist at the MRI facility to contact my neurologist immediately due to an "abnormality". It was that day, in June 2017, I'd learn of a mass on my brainstem, likely a meningioma, schwannoma, or hemangioblastoma.
Additional imaging was ordered and I was set up with a neurosurgeon. But not before being turned down by two, seeing one only as a favor to a close family friend, then finally to my current (local) neurosurgeon.
With my family in tote, treatment options were discussed on several occasions. We decided on gamma knife radiation, due to the location, surgery would be extremely risky, lengthy, and have potentially huge negative side effects. A rare genetic condition was mentioned but my doctors didn't believe I had it.
Since hemangioblastomas are normally slow-growing tumors, we waited to get through the holidays before proceeding with gamma knife on January 31, 2018.
Nothing, and I mean absolutely nothing, could have prepared me for what I would experience after radiation. Radiating a tumor with cyst, opens up the blood vessels which could cause fluid to leak out and cause more swelling or bigger cyst growth, of which, I've experienced.
I suffered significant edema in my brain, which is still present today, more than two years after treatment. The cyst also grew substantially after radiation.
The impact radiation had on my life has been catastrophic. I expected to be back at work within 1-3 days; I took off 5 to be "safe". It's been over two years and I've yet to return. I've been to countless speech, occupational and physical therapy appointments. They helped some but eventually, I was discharged as progress plateaued.
Sometime last year, I decided to go against my doctor's opinions and pursue genetic testing. I waited 8 months for an appointment with a geneticist and was contacted about a month later with another life-altering statement.
I have a rare genetic condition that affects 1 in 36,000. In short, I lack the tumor (cancerous and non) suppressing gene which increases my risks for tumors and/or cysts in up to 10 parts or my body. To boot, there are 4 main types of this condition, I've somehow acquired the 5th one.
Fortunately, there are Comprehensive Critical Care Centers throughout the world for people with this condition. I was able to visit one at Stanford University in California earlier this year. It was there, I met with a neurosurgeon that gave me hope! He nonchalantly said, "call me if things get worse, or if you get tired of living like this and we can take it out."
While still in California, I reached out to another neurosurgeon with loads of experience spanning decades at different places, operating on hundreds of people, many of which share my genetic condition. He's spent lots of time at the National Institute of Health in Bethesda, MD and is currently at Ohio State University.
I have a brain tumor. I have a very rare genetic condition, and now, I will need to travel to Ohio, during a global pandemic, for essential surgery. My doctor urged that things will get worse if left untreated, especially with a cyst (I only learned of this while at Stanford) pressing on my spinal cord.
As I remain positive, I ask that you do the same. Thank you so much, with hope and love.
- Jennie Mano`i
______________
It started with tingling fingers in late 2016, this sensation, coupled with a burning feeling, traveled up my arm, shoulder, and neck. I began dropping things, losing dexterity of my fingers, experienced stiffness and a loss of range of motion in my neck. I also began to lose feeling in my face.
It was several months before I could get an appointment with a neurologist and it took nearly 6 months to be taken seriously and get an MRI. Prior to this, I was diagnosed with very mild carpal tunnel and essential tremor disorder.
I was advised by the radiologist at the MRI facility to contact my neurologist immediately due to an "abnormality". It was that day, in June 2017, I'd learn of a mass on my brainstem, likely a meningioma, schwannoma, or hemangioblastoma.
Additional imaging was ordered and I was set up with a neurosurgeon. But not before being turned down by two, seeing one only as a favor to a close family friend, then finally to my current (local) neurosurgeon.
With my family in tote, treatment options were discussed on several occasions. We decided on gamma knife radiation, due to the location, surgery would be extremely risky, lengthy, and have potentially huge negative side effects. A rare genetic condition was mentioned but my doctors didn't believe I had it.
Since hemangioblastomas are normally slow-growing tumors, we waited to get through the holidays before proceeding with gamma knife on January 31, 2018.
Nothing, and I mean absolutely nothing, could have prepared me for what I would experience after radiation. Radiating a tumor with cyst, opens up the blood vessels which could cause fluid to leak out and cause more swelling or bigger cyst growth, of which, I've experienced.
I suffered significant edema in my brain, which is still present today, more than two years after treatment. The cyst also grew substantially after radiation.
The impact radiation had on my life has been catastrophic. I expected to be back at work within 1-3 days; I took off 5 to be "safe". It's been over two years and I've yet to return. I've been to countless speech, occupational and physical therapy appointments. They helped some but eventually, I was discharged as progress plateaued.
Sometime last year, I decided to go against my doctor's opinions and pursue genetic testing. I waited 8 months for an appointment with a geneticist and was contacted about a month later with another life-altering statement.
I have a rare genetic condition that affects 1 in 36,000. In short, I lack the tumor (cancerous and non) suppressing gene which increases my risks for tumors and/or cysts in up to 10 parts or my body. To boot, there are 4 main types of this condition, I've somehow acquired the 5th one.
Fortunately, there are Comprehensive Critical Care Centers throughout the world for people with this condition. I was able to visit one at Stanford University in California earlier this year. It was there, I met with a neurosurgeon that gave me hope! He nonchalantly said, "call me if things get worse, or if you get tired of living like this and we can take it out."
While still in California, I reached out to another neurosurgeon with loads of experience spanning decades at different places, operating on hundreds of people, many of which share my genetic condition. He's spent lots of time at the National Institute of Health in Bethesda, MD and is currently at Ohio State University.
I have a brain tumor. I have a very rare genetic condition, and now, I will need to travel to Ohio, during a global pandemic, for essential surgery. My doctor urged that things will get worse if left untreated, especially with a cyst (I only learned of this while at Stanford) pressing on my spinal cord.
As I remain positive, I ask that you do the same. Thank you so much, with hope and love.
- Jennie Mano`i
Organisator und Spendenbegünstigter
William Grantham
Organisator
Honolulu, HI
Jennie Manoi
Spendenbegünstigte