08/08/2019
I just received great news from Jim Van de Water indicating that his angioma surgery was a huge success and he is doing fine. He wrote a story about his ordeal that is quite interesting to say the least. Here is his story...
Goodbye Angie
‘Angie’ and I met for the first time on May 17, 2019. It’s not that we hadn’t met before. She had been courting me in secret for some time, but she had chosen this particular evening to change my life.
Our first encounter nearly killed me.
That evening started like any other. I was doing household repairs. Looking down, I noticed a small pool of drool on the floor. Unable to control my jaw movements. I walked over to my wife to say that I thought I was having a stroke but was only able to speak gibberish. She looked at my drooping face in shock and dialed 911.
That first night Angie hit me hard. By the time the ambulance arrived at the hospital, I already recognized signs of impending seizures – a slight jaw twitch, then pain across my left hand, followed by electrical shocks parsing my brain, increasingly aggressive jaw tremors, fascial contortions, then exhaustion and brain fog.
That night I descended into a seizure-induced rabbit hole. I was put into a CAT scan machine to determine the cause of these increasingly frequent ‘focal aware’ seizures. The doctors at the local hospital all agreed: “We don’t know what’s wrong with him.” The CAT scan results showed a calcification on my brain. After a series of 10-12 seizures, a medical team was brought in to put me into an induced coma to prevent possible brain damage. Just before that intervention, anti-seizure medications were administered, and my seizures abated. I was rushed by ambulance to the closest Neurology Intensive Care Unit in Bethlehem, PA.
Little did I know that I’d been so lucky. I was at home when this happened, twenty minutes from our local hospital. Just three weeks prior, my wife and I were exploring villages in Tuscany, and in another three weeks, we would be in Mexico. I could have died thousands of miles from home.
On May 16th, the day prior to my bout with seizures, fonts on my computer popped from the screen. The difference between ‘Times New Roman’ and ‘Arabica’ suddenly seemed so annoying! Glancing around the room, tiny spots on the wall drew in my attention. I noticed the smallest blemish on someone’s face and would follow it with great intent. When I reached out my left hand to touch my nose, neither of those body parts seemed to be under my command – they felt disembodied. These types of events, commonly known as ‘halos’, are a hallmark of many brain related illness and are a common prelude to seizures.
Many people with brain tumors give them names. Since mine was a cavernous angioma, it seemed natural to name it ‘Angie’.
Angiomas work in strange ways. Although roughly 1 person in 200 has an angioma in their brain, most will go undiscovered. Roughly one in five angiomas will be found by an exploratory MRI following an injury, and another one in five will bleed and cause seizures – like mine. Raspberry-like in structure, angiomas have weak walls and are prone to leakage. Once an angioma bleeds a first time, there is about a 20-30 percent chance that it will bleed again within a two-year timeframe. Bleeds can lead to more seizures, brain damage, strokes and paralysis. This puts a tight timeline on getting the tumor out before it bleeds again.
My wife went to work fast to find the best qualified surgeon. Maria contacted Mayo Clinic, Johns-Hopkins, and Mt Sinai. All agreed to see me. After further research, we met with Dr. Joshua Bederson, Chairman of Neurosurgery at Mt Sinai Hospital in New York, a veteran of more than 3600 neuro surgeries. Dr. Bederson and his team, including his PA Leslie, did an incredible job guiding us through this difficult discussion, reviewing the risks of surgery and the potential rewards. We had found our surgeon.
Dr. Bederson’s team brought with them the best of modern technology. A series of functional MRIs was done to assess the ‘areas of eloquence’ in my brain to see what functions would be at risk in the surgical area. MRI and CAT scans were combined to create a 3D image of my brain. Donning 3D glasses and holding a Gameboy controller, I travelled through my skull and into a cavernous vein-filled globe. The technician said to continue back further, where Angie hid, dressed in green. After the results of these tests were analyzed, the surgery was given the go ahead and scheduled for August 1st.
The surgery was conducted at Mt Sinai. I remember seeing the words ‘Operating Theater’ in black printed on the wall, enormous lights looming overhead, and an introduction to the surgical team, including the technician that built the 3D image of my brain. I woke up in the recovery room roughly 6 hours after I was anaesthetized.
I had expected to spend at least three days in the hospital after a craniotomy and resection of the tumor. I was discharged less than 24 hours after I entered the recovery room. The staff attributed my early release to my physical condition and to Dr. Bederson’s ace surgical team.
Ridding my brain of Angie had far greater consequences than I could have imagined. Angie had been shadowing me for years, possibly decades, causing pain and discomfort that I would be able to link together only post-surgery. Pain spasms in my left palm that started about a year ago - gone. Pain in my left foot that awakened me nightly for almost six years - gone. Pain on the right side of my jaw that started some 10 years ago – gone. Just how far back did Angie’s sway over me reach?
Eighteen years ago, I was diagnosed with benign positional vertigo. Now, lying on my back at night, I didn’t feel a tinge of vertigo. My tinnitus – dating back 25 years - has less power to it – and my hearing is less sensitive now. Most important, Angie’s main misery, seizure-like feelings and seizures – gone.
Just how deep into my psyche did Angie pe*****te? One week prior to my seizures, my wife and I had a disagreement that ended with her saying - “You need to get your brain checked. There is something wrong with it!” Maria and I had both seen changes in my memory, ability to focus, degree of patience, empathy, and sociability.
How is it possible that all of these effects to motor skills and personality can be linked to a one-centimeter brain lesion surrounded by blood-damaged brain cells?
It’s only three days since my surgery. I’m in recovery at home. There is considerable swelling on one side of my head, but minimal discomfort and no pain. As I recuperate over the next five or six weeks, I consider how quickly my wife and I were able to deal with this life-threatening tumor. By way of angiomas, I consider myself to be very fortunate - seizures caused by Angie were controlled with a single drug, I had no seizures after the nightmare evening of May 17th, the lesion was small, and the position of the lesion at the outside of my frontal cortex beside a brain fold made excision less risky.
This affair with Angie started without my consent, and it ended with a craniotomy! My wife Maria, a physical therapist, has been supportive through this long-term fling with Angie and has helped me through this in more ways than I can understand right now. Friends and work colleagues have been supportive and are helping me to see through this as well. I’ve been joking that the doctor reactivated the ‘emotion chip’ in my brain, as the slightest thing can bring me to tears.
I’d always bragged that I was the healthiest one in our family, and at 58 I had never been hospitalized. One hidden threat – Angie, changed all that in a single evening.
Less than three months after leaking into my brain, Angie is out of my head and is waiting in a sample bag, submitted for research into how angiomas form, how they grow, and why they lay in wait for so long. For this angioma, it’s a new beginning.
For me, it’s the start of a new brain and a new life - without Angie.
-Jim
