Help Dustin get Brain Surgery for his Pineal Tumor

Hello,

My name is Dustin and I am a thirty-two-year-old man with autism suffering from a rare 8-9 mm pineal gland cystic tumor that is completely devastating my life.

Starting in October of 2017, I developed an intractable migraine and pressure in my skull that has never went away. An MRI scan in April of 2018 revealed a pineal gland tumor. Ever since then, I have experienced a plethora of debilitating symptoms.

I have had to quit my job, discontinue college and forgo all of my life’s pleasures to focus on my medical condition full time.

The pressure in my skull has been increasing drastically over time, and my average daily pain is now a ten out of ten. It never drops below a nine anymore. When I speak, my own voice vibrates throughout my skull. Because of this, I have to limit my speaking time to under twenty minutes a day; and I must wear earplugs twenty-four hours a day.

I am essentially in a state of perpetual migraine; I cannot watch TV or enjoy listening to music because the sound waves cripple me with even worse sickness. Nor can I call family or friends. I cannot even ride my bike due to the constant nausea. I can’t even have normal conversation with my partner of nine years.

I am nauseous for entire weeks on end without rhyme or reason, I always feel like I am going to vomit. Even a simple chore, like walking to the mail box is incredibly taxing on my body.

In the last year, I have developed full body peripheral neuropathy, and it only gets worse as time goes on. My entire body burns with nerve pain for weeks on end, despite all of the medicine that my neurologists have prescribed me. I cannot get even the slightest pain relief.

I have even developed extreme nerve pain in my teeth, which I feel if the air even lightly touches them. This leads to crippling excruciating nerve pain for the better part of an hour. My ears are now ringing permanently too.  

On top of all of that, I have started to develop memory problems. I have no energy anymore; no matter how long I sleep. The stress is wearing on me in so many ways.

I have tried over thirty medications to prevent and abort the pressure in my skull and all of the accompanying symptoms. None have worked. I have been through every type of injection, Botox, Occipital nerve blocks and cortisone shots, all to no avail.

Even new and much anticipated migraine medications have failed to help me. Amovic, Emgality, Ubrelvy and many more. I even tried the Cefaly device and it gave me no escape from the pain.

In 2019 I started seeing a neurologist who specializes in migraines at the University of Michigan Taubman Center. I was treated twice with outpatient infusion at their ADTU clinic and even that could not put a dent in the excruciating pain inside my head.

I also recall at least three times where I was driven to the ER crying from the pain and each time, I was forced to go home with no pain relief.

It eventually reached a point where I exhausted all of my options with the doctors in Michigan and I was referred to the Jefferson Headache Center. In March of 2020, I was forced to travel out of state to Philadelphia to be admitted as an inpatient in the Jefferson Headache Center’s migraine clinic.

I spent seven days in their hospital, hooked to IVs as they fed me many medications that made me feel even sicker than I felt before. I found this to be especially devastating. After being told that most patients leave after such an extreme treatment without a migraine, I left with zero improvement in pain.

Until now I have resigned myself to living in a dark room, and never leaving to avoid all light and sound.

Things were seeming completely and utterly hopeless. That is until I made it down to South Carolina on August 21st to see Dr. Sunil J. Patel.

He looked over my multiple MRI discs, and he believes that I have a symptomatic pineal gland tumor. He believes that my case lines up medically with a great many other patients of his who have went on to have all of their symptoms vanish after surgery. He believes that my pineal tumor is the likely source of all of my pain and he is recommending a left occipital craniotomy to surgically remove the pineal tumor. 

That is the good news. The bad news is that he is one of the only two surgeons in the country who will perform such a highly specialized surgery. Because of this, my surgery must be done out of state and that means that there will be exorbitant out of pocket medical costs involved with the procedure that I cannot afford.

If I do not get this tumor surgically removed. I fear that I will forever be crippled by intractable pressure, nausea, vertigo, lethargy, burning nerve pain, tinnitus, and so much more. I won’t be able to achieve my life’s aspirations. Which means I will not be able to go back to school for my Bachelor’s Degree in Biology or ever hold any sort of job again.

Statistically I also run the risk of developing complications such as Parinaud’s Syndrome, blindness, and even life-threatening conditions such as Hydrocephalus.

Dr. Patel wants to do surgery to remove the tumor. But in order to proceed, I must ask for your help. As a disabled person, I have a very limited income. I live in a rural area and I don’t even have a working car right now. I also have no social network.

I need to secure funds for out of pocket medical costs, airfare for out of state travel for surgery and recheck, three weeks of lodging, a rental car, food, and other costs incurred from being unable to work for three years due to the debilitating pain.

If anyone out there is reading this, please share my story if you can. And if you have anything that you can spare to help me get my life back, no matter how small, it would mean the world to me.

Thank you for your time and consideration.

Dustin

Note: See below for more pictures, including a screencap of my brain MRI.