Brain Cancer-On Disability Help!
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Hi my name is Mike. I am 33 years old and I have brain cancer. I was diagnosed with a pilocytic astrocytoma on my pineal gland in 2007 when I was just 23 years old. This tumor is also deeply imbedded in my brainstem, which makes it impossible to completely remove with current medical technology. My symptoms appeared as inconsolable migraines, nausea, and troubles with balance. After going to multiple doctors who thought that I had a sinus infection, I finally found a doctor to send me out for a CT scan. Later that night I was called by the doctor and advised to get to a hospital immediately.
After the call I went to the hospital and my neurosurgeon in Tampa performed an emergency shunt placement in order to drain the excess cerebral spinal fluid (CSF) as I was suffering from severe hydrocephalus (fluid on the brain). The cause of this hydrocephalus was due to the tumor blocking one of the valves that allows CSF to flow in the brain. This was to be the first of many surgeries.
Shortly after the shunt was placed to drain the excess CSF from my brain, my brain drained too quickly and I hemorrhaged. This subdural hematoma required an emergency craniotomy, my second brain surgery. My scalp was cut from ear to ear and the top of my skull was removed in order to find and resolve this subdural hematoma.
The third surgery was a novel procedure called an endoscopic third ventriculostomy. The neurosurgeon basically opened a small hole in my third ventricle to allow the CSF to bypass the tumor blockage. This hole prevents me from experiencing hydrocephalus on a daily basis.
My fourth surgery was performed out in Phoenix, AZ by a neurosurgeon that specializes in the type of tumor that I have. Unfortunately, not many neurosurgeons will even operate on this type of tumor because it is in the geometric center of my brain and attached to my brainstem making it difficult to access. In 2007 he removed the majority of the tumor, but it grew back necessitating more surgeries in 2013 and 2014.
My fifth and sixth surgeries were in December of 2013 and March of 2014, respectively. The neurosurgeon removed most of the tumor and wanted to go back for another surgery. At that time I was extremely weak and not ready for another surgery so I opted to try radiation. In Tampa at Moffitt I underwent 30 treatments of IMRT (Intensity Modulated Radiation Therapy) radiation. The radiation was HELL. I lost 50 pounds, big patches of hair, and felt nauseous everyday. I cannot stress enough how much radiation sucks! I completed this radiation in June of 2014. I slowly started feeling better and I got my hair back after 3 months.
I had a follow up MRI in July of 2014 and it showed that the tumor was shrinking. Unfortunately this good news did not last for long. Fast forward to November of 2014. I had a 3-month follow up MRI and it showed that the tumor had grown slightly and the cystic component had DOUBLED in size. The radiation oncologist was very nervous for me because the cyst was compressing my brain stem. I sent out my MRI to my neurosurgeon in Phoenix and he determined that I needed to have yet another surgery.
On December 5th 2014 in Phoenix, I endured my 7th surgery. This operation was VERY AGGRESSIVE. The neurosurgeon said himself that he was going to be as aggressive as possible in order to remove as much tumor and cysts as he could without sacrificing my quality of life. As a result I experienced something called Cerebellar Ataxia. I also got an acquired brain injury. This condition made it so I was unable to walk, talk, feed myself, or use the bathroom by myself. I was sent to do rehabilitation at both the Barrow Neurological Institute and the Florida Hospital. I spent time in inpatient rehab and had to relearn how to walk, talk, and take basic care of myself. This was a very intensive and challenging process. I wouldn’t wish this on my worst enemy. My amazing wife, Hillary, and my son, Michael, gave me the strength to continue and recover as much as possible.
After a few months of recovering I realized that I was still suffering from cognitive difficulties. My supportive wife noticed my struggles and arranged for me to have my brain evaluated by the neuropsychology department at Tampa General Hospital. Following 8+ hours of intense psychological and functional testing of my brain, I was diagnosed with an Acquired Brain Injury.
The aftermath of my 7th brain surgery was really hard on me. I have never experienced anything like having a brain injury. My wife took me to many psychologists and support groups so that I could learn how to cope with my condition. I was a stranger inside my own mind. I couldn’t even recognize my own reflection in the mirror. It was very frustrating and scary.
Just as I was making progress coping with my Acquired Brain Injury, I found out that I needed more surgery. I had a 6-month post-operation MRI in June 2015. It was determined by my neurosurgeons in both Phoenix and Tampa that more surgery is required to drain the cysts and remove more of the tumor. My wife and I are completely devastated by this news.
This brain cancer tumor and cyst caused me a lot of problems. I was in constant pain, dizzy and have double vision, and I feel exhausted constantly. I just wanted to get rid of this tumor and get on with my life.
My surgery was July 14th 2015.
The surgery was extremely difficult and I almost died due to a complication called an epidural hematoma. It was during this time that I was placed into a coma. I endured 4 out of body experiences, and met angels who healed me and guided me back to life. It was during this time that I came back to God and Jesus. Now I am a faithful Christian, go to church weekly, and pray daily.
Unfortunately, 9 surgeries and radiation has completely wiped me out leaving me unable to work. I suffer from chronic pain, chronic fatigue, balance problems, as well as memory issues.
Anything will help me to continue fighting this brain cancer and win!! I am currently in remission, but medical expenses and not being able to work has left my bank account drained! Please reach into your heart and donate anything you can. Thank you for listening to my story and thank
you for any donations made. Please donate whatever you can, even if it's a dollar. Also like and share my story.
After the call I went to the hospital and my neurosurgeon in Tampa performed an emergency shunt placement in order to drain the excess cerebral spinal fluid (CSF) as I was suffering from severe hydrocephalus (fluid on the brain). The cause of this hydrocephalus was due to the tumor blocking one of the valves that allows CSF to flow in the brain. This was to be the first of many surgeries.
Shortly after the shunt was placed to drain the excess CSF from my brain, my brain drained too quickly and I hemorrhaged. This subdural hematoma required an emergency craniotomy, my second brain surgery. My scalp was cut from ear to ear and the top of my skull was removed in order to find and resolve this subdural hematoma.
The third surgery was a novel procedure called an endoscopic third ventriculostomy. The neurosurgeon basically opened a small hole in my third ventricle to allow the CSF to bypass the tumor blockage. This hole prevents me from experiencing hydrocephalus on a daily basis.
My fourth surgery was performed out in Phoenix, AZ by a neurosurgeon that specializes in the type of tumor that I have. Unfortunately, not many neurosurgeons will even operate on this type of tumor because it is in the geometric center of my brain and attached to my brainstem making it difficult to access. In 2007 he removed the majority of the tumor, but it grew back necessitating more surgeries in 2013 and 2014.
My fifth and sixth surgeries were in December of 2013 and March of 2014, respectively. The neurosurgeon removed most of the tumor and wanted to go back for another surgery. At that time I was extremely weak and not ready for another surgery so I opted to try radiation. In Tampa at Moffitt I underwent 30 treatments of IMRT (Intensity Modulated Radiation Therapy) radiation. The radiation was HELL. I lost 50 pounds, big patches of hair, and felt nauseous everyday. I cannot stress enough how much radiation sucks! I completed this radiation in June of 2014. I slowly started feeling better and I got my hair back after 3 months.
I had a follow up MRI in July of 2014 and it showed that the tumor was shrinking. Unfortunately this good news did not last for long. Fast forward to November of 2014. I had a 3-month follow up MRI and it showed that the tumor had grown slightly and the cystic component had DOUBLED in size. The radiation oncologist was very nervous for me because the cyst was compressing my brain stem. I sent out my MRI to my neurosurgeon in Phoenix and he determined that I needed to have yet another surgery.
On December 5th 2014 in Phoenix, I endured my 7th surgery. This operation was VERY AGGRESSIVE. The neurosurgeon said himself that he was going to be as aggressive as possible in order to remove as much tumor and cysts as he could without sacrificing my quality of life. As a result I experienced something called Cerebellar Ataxia. I also got an acquired brain injury. This condition made it so I was unable to walk, talk, feed myself, or use the bathroom by myself. I was sent to do rehabilitation at both the Barrow Neurological Institute and the Florida Hospital. I spent time in inpatient rehab and had to relearn how to walk, talk, and take basic care of myself. This was a very intensive and challenging process. I wouldn’t wish this on my worst enemy. My amazing wife, Hillary, and my son, Michael, gave me the strength to continue and recover as much as possible.
After a few months of recovering I realized that I was still suffering from cognitive difficulties. My supportive wife noticed my struggles and arranged for me to have my brain evaluated by the neuropsychology department at Tampa General Hospital. Following 8+ hours of intense psychological and functional testing of my brain, I was diagnosed with an Acquired Brain Injury.
The aftermath of my 7th brain surgery was really hard on me. I have never experienced anything like having a brain injury. My wife took me to many psychologists and support groups so that I could learn how to cope with my condition. I was a stranger inside my own mind. I couldn’t even recognize my own reflection in the mirror. It was very frustrating and scary.
Just as I was making progress coping with my Acquired Brain Injury, I found out that I needed more surgery. I had a 6-month post-operation MRI in June 2015. It was determined by my neurosurgeons in both Phoenix and Tampa that more surgery is required to drain the cysts and remove more of the tumor. My wife and I are completely devastated by this news.
This brain cancer tumor and cyst caused me a lot of problems. I was in constant pain, dizzy and have double vision, and I feel exhausted constantly. I just wanted to get rid of this tumor and get on with my life.
My surgery was July 14th 2015.
The surgery was extremely difficult and I almost died due to a complication called an epidural hematoma. It was during this time that I was placed into a coma. I endured 4 out of body experiences, and met angels who healed me and guided me back to life. It was during this time that I came back to God and Jesus. Now I am a faithful Christian, go to church weekly, and pray daily.
Unfortunately, 9 surgeries and radiation has completely wiped me out leaving me unable to work. I suffer from chronic pain, chronic fatigue, balance problems, as well as memory issues.
Anything will help me to continue fighting this brain cancer and win!! I am currently in remission, but medical expenses and not being able to work has left my bank account drained! Please reach into your heart and donate anything you can. Thank you for listening to my story and thank
you for any donations made. Please donate whatever you can, even if it's a dollar. Also like and share my story.
Organizer
Michael Belliveau
Organizer
Lutz, FL