October 10 2019 is World Mental Health Day to raise awareness and mark this day we have published a MENTAL HEALTH Special supplement and are running a series of blogs #WorldMentalHealthDay
Molly Barr was diagnosed with an arteriovernous malformation (AVM). Molly talks candidly to RARE Revolution about what she termed as living with a monster in her brain and the impact it had on her mental health after she was considered healed
My mental health I want people to know that once I was considered healed, that was not the end of my journey. People who are chronically ill fight another battle too. This is the battle of the after-effects which include depression, anxiety, and post-traumatic stress disorder (PTSD). About a month after I was told that I was cured, I found I was unable to leave the house by myself, unable to go to work, afraid to do anything. I knew something was wrong and I was diagnosed with anxiety, depression, and PTSD as a result of what I had witnessed, and experienced.
I have been through tons of therapy, tried loads of medicines, and even tried outpatient hospitalisation. I have my symptoms under control for the most part after three years now, but I struggle with them on a daily basis. I continue to experience visual seizures due to the scar tissue of my procedures, and everyday is a new challenge. My passion is to raise awareness about AVMs and PTSD/anxiety and help people make positive life decisions. AVMs are considered a rare disorder but many go undetected until it's too late.
I share my experience because I want to make a difference, this is my experience of AVM...
A monster in my brain I learned that I am very hard to kill. “50 per cent chance you will die”, is one of the first things I heard when I was diagnosed with an arteriovenous malformation, AVM. An arteriovenous malformation is a tangle of abnormal and poorly formed arteries and veins in the brain (or other parts of the body) and is a congenital disorder (present at birth). My AVM was three cm in size, about the size of a walnut. The average brain is only 15 cm. So, my AVM was considered rather large. Plus, it was located in my occipital lobe, right in my vision and speech centre. I was already 24 years old and lucky to have found it. I was having severe migraines since the age of six.
Finally, by age 24, it was time to investigate, as the migraines’ frequency increased significantly, and the pain was intensifying.
The MRI revealed what I call the “monster” in my brain. AVMs tend to have bleeds or what most people know as aneurysms. The walls of the veins thin and eventually burst. I am extremely fortunate that I lived as long as I had without a bleed. Not to mention that I hadn’t ever taken any non-steroidal anti-inflammatory drugs, NSAIDs (thanks to my mom) or recreational drugs, and I had even been hit in the head as a child with a piece of concrete by a classmate and yet...here I was. Seemingly, a healthy adult with a time bomb in my brain. My journey was about to begin. A 10-year journey that would forever change my life. Because of the location of my AVM, I could not undergo a cerebral craniotomy (brain surgery) as it could result in blindness or death. I live in Northern Virginia in close proximity of Washington, DC, and I am extremely blessed to have access to such amazing medical experts. We were sent to Georgetown University for the first step in the process.
I had my first cerebral angiogram (a diagnostic test using an x-ray that produces an image to help find blockages or other abnormalities) in 2007. For this process, doctors enter your groin at your femoral artery with a catheter. You are awake for this whole process, but it is a threshold consciousness, so there are times that you feel asleep and you half-remember what happened. The doctor guides the catheter through your arteries up to your neck and pushes a dye into your brain in order to see the AVM and take X-rays of its functioning. Afterward, they close the femoral artery. This can be done via hands-on pressure for fifteen minutes or with a collagen plug. The recovery is a few days of rest and no heavy lifting. I had a total of twelve angiograms (a type of x-ray used to examine blood vessels) over the ten years. They were painful because I could feel the catheter exiting my body and my body was sore; dangerous because the dye could affect my kidneys and I could bleed out from my femoral artery; embarrassing because the entire operating room (always teaching hospitals) would see me naked; and upsetting because the news was never good afterwards.
I was told that my first step after the angiogram would be to undergo an embolisation. An embolisation is performed like the angiogram, but you are fully anesthetised while the doctor injects Onyx, a liquid metal-like substance into the veins. Over time, the Onyx hardens and blocks blood flow through the AVM, forcing the flow to find a normal path. The doctors at Georgetown could only complete three of these procedures. They couldn’t get into some of the smaller veins of my AVM. These procedures took almost a year to complete, and were some of the most painful I have ever felt; waking up to the endotracheal tube being pulled out of my throat after each procedure was difficult. In addition, I would get explosive headaches that made me feel like I was dying. My Mom had to bathe me and take care of me like I was unable to perform these tasks alone. It was an extremely tough year.
After these procedures, I started experiencing episodes, which after awful testing, a seizure specialist diagnosed as visual seizures. My driver’s license was taken from me until the seizures were under control. I fight with these episodes to this day. They are painful, causing partial loss of vision, and while medicine helps, they remain.
Once we learned the doctors at Georgetown couldn’t help further, we were referred to University of Virginia for Gamma Knife radiation (a type of radiation therapy used to treat tumours, vascular malformations and other abnormalities in the brain). This is an all-day procedure, which starts early in the morning by being put under and having a metal halo attached to your skull in four places. Then, in the operating room, I had an angiogram, after which an MRI is completed with the halo attached. The final step is to complete the radiation. It is a long day - painful, exhausting, and the worst part is hearing the crunching of your skull when the halo is unscrewed. Radiation can take three years to shrink the AVM, requiring progress checks every six months via an MRI.
Every six months, we travelled for two hours to UVA (University of Virginia Health), where we would receive bad news including that the radiation wasn’t working because the embolised material had blocked it. After three years, we learned it hadn’t worked, not to mention, the hair loss I experienced. Some people didn’t notice the chunk of hair that was missing, but it took an emotional toll on me. Because the radiation didn’t work, we did a fourth embolisation and then a second Gamma Knife radiation. During the second radiation, I got violently ill and vomited for three hours. The nurses told me I couldn’t complete the radiation because I couldn’t stop vomiting. So, I willed myself to stop because I refused to go through all of that again. Finally, after an additional three years, I got good news, that my AVM was obliterated. The AVM still sits in my brain, but technically it is not active anymore. I have annual check-ups to see if I have any scarring from the radiation, cysts, brain tumours, or if the AVM has opened again.
It was after being healed that my mental health battle began and I was then diagnosed with anxiety, depression and PTSD. Mental health problems can occur at any point in anyone's lives and are something that I struggle with everyday. I hope that sharing my experience will help because I want to make a difference.