Rindge resident recounts brain aneurysm
I am a brain aneurysm survivor. I like to tell people that I literally blew my mind. I was stricken while in Colorado in February 2008. Becoming violently sick and disoriented immediately sent us to a hospital, and from there I was airlifted to a Denver hospital. The prognosis was against me and the doctors, my family and friends did not know if I’d survive. My life changed drastically after brain surgery. I had to discover the “new me” and adapt my daily living.
It was five years ago that I spent the month of March hospitalized in Colorado, and every spring I recount the event and celebrate another year’s progress from this life-altering event.
I used to teach photography at Brattleboro Union High School. I was in my 10th year of teaching and made the daily commute from Rindge across Route 119. My husband and I planned a belated 30th wedding anniversary ski trip to Colorado over my 2008 February school vacation. My nephew lives in Denver and after skiing midweek in the Breckenridge, Colo., area we were going to ski the following weekend with him and his daughter.
My husband and I arrived in Denver on a Monday and drove to Frisco, Colo., where we had three wonderful days skiing at Copper Mountain and Breckenridge. The only problem was I had a very annoying and nagging headache, and no over-the-counter headache medication was alleviating the pain. It was an unusual headache as the pain originated from the base of my neck.
After our third day on the slopes, we were preparing to drive back to Denver to meet up with my nephew. Our bags were packed, and I remembered I needed to write postcards. I showered and began to feel nauseated. Around 10 p.m. I woke my husband and told him I had the worst headache ever. I then became violently sick and disoriented, and he said he was taking me to the hospital. The pain was intense and this was when my memory starts to fade.
My story is recounted now from my husband’s oral descriptions and from his daily emails, which he wrote to our relatives and colleagues.
It was about 10:30 p.m. when we arrived at Summit County Hospital in Frisco. The ER doctor initially said it was possibly altitude sickness but to be sure he wanted a CT scan. Seeing the results, he informed us that it was bad and there was evidence of a brain bleed. He wanted me transported by ambulance to a Denver Hospital. I then had a seizure and was unconscious. Another CT scan was done, which found that the bleeding was getting worse and the doctor now wanted me airlifted to Denver. As I was being prepped for transport, they inserted a breathing tube. The local medflight helicopter was out of service so one had to be called in from Denver. The severity of my condition was presented to my husband when he asked the doctor if he could get some sleep and meet me in Denver in the morning. It was recommended that he start the drive as soon as the helicopter took off. My one regret is I got to fly in a helicopter over the Continental divide but I don’t remember it!
In Denver an angiogram was done and it was discovered I had a dissected pseudo aneurysm of my right vertebral artery, which resulted in a subarachoid hemorrhage. In other words, one of the main arteries leading to my brain had a leak and the blood was flowing into the brain. This resulted in a hemorrhagic stroke. Time was critical and the outcome was unpredictable but the interventional neuroradiologist explained to my husband and nephew that he could attempt to repair the bleed. The goal was to safely seal off the bleed and prevent further rupture. Around 10 a.m. a shunt was placed in the skull to drain excess blood and cerebral spinal fluid. Surgery was scheduled for 1 p.m. The doctor suggested my husband return around 2 p.m. to wait.
I was prepped for endovascular surgery. This is a relatively new treatment for brain aneurysms. It is a minimally invasive surgery. Instead of cutting open the skull, the surgery is preformed through the femoral artery. After making an incision in the artery, a catheter is inserted into the artery through which a micro catheter guides wires through the heart and into the brain to repair the aneurysm. Under X-ray visualization, platinum coils were inserted into the aneurysm and a stent was placed in the artery to stabilize and hopefully stop the bleed. Around 5 p.m. the interventional neuroradiologist met with my husband and nephew to explain the procedures and that now we wait. For the next 15 days I was conscious but not cognizant. This surgery took place on leap year, Feb. 29, 2008; a date that I only need to recall once every four years!
I remember waking up and seeing my sister from Pennsylvania in the room. I was trying to figure out if my 90-year-old mother knew I was hospitalized. Mom’s birthday was in March and everyone was telling me it was now March. When I asked my husband if mom knew that I was in the hospital, he said yes. But when I asked my sister if mom knew, she said no. Then I realized my mother had passed away nine months ago. I was beginning to process.
I had round-the-clock visits from nurses asking routine questions: my name, my age, occupation and my kids’ names, and where I was. I kept answering I was in New Hampshire. They would reply, “No, you are from New Hampshire but you are in Denver now.” But I could never grasp why I was in Denver. After a while I could follow the routine and knew the required answers. Then there were the routine physical tests also done on a daily basis every three hours: smile, stick out your tongue, raise one eyebrow then the other, raise your arms out in front of you, hold them there.
I wouldn’t eat much and the nutritionist visited and gave me an ultimatum: Either eat or I would get a feeding tube. I chose to eat. I ordered apple pie and ice cream.
A major set back occurred on St. Patrick’s Day weekend. It was night in the ICU and the noise level was annoying to me. I disconnected my brain shunt and all my monitors, then walked out to the nurses’ station to ask for quiet. I remember their shock and displeasure. The result was now I was a true airhead. The drainage hole that had been drilled into my skull was now open and air was getting into the brain. The opening in my head now had to be closed with staples. I was suffering from ICU psychosis. Having spent 17 days in the ICU without uninterrupted sleep was showing its effect. On March 17, I was released from the ICU and was moved to a room in the neurology section of the hospital.
This was when my rehabilitation began. This was when reality hit — my first walk. Each day I would progress a bit further in the corridor. My goal was to make the loop around the nurses’ station. I was able to achieve that in a couple of days, but I couldn’t remember where my room was. I was now beginning to notice I had deficits. My neurologist would visit on a regular basis to check my eyes. He informed me that there was retinal damage to my left eye and my sight would be compromised. I said that’s OK as I’m a photographer and my camera can be my eye. My neurosurgeon would visit and have long talks with me. He would make repeat visits to see if I could recall previous conversations. This was to check on my comprehension levels.
I was getting very anxious to leave the hospital but there was a real sense of security there for me. Leaving these doctors behind and finding follow up care in New Hampshire was a scary thought. I was now very fearful of how we would return home. After brain surgery, did I really want to get on an airplane? It first had to be determined that there was no air present in the cranium. I had a final CT scan and the technician complemented me when I arrived, as it was the first time he got to greet me as a real person. He was happy to be able to see me alert and talking. He told me I had come a long way since he first saw me. This scan showed that there was no air present. My doctors said I was cleared to fly. The doctors worked closely with us in recommending interventional neuroradiogists on the East Coast for follow up care.
In continuing the preparation for release from the hospital, I went through more physical and mental evaluations. I tried so hard to be successful, but was now grasping that I had many major disabilities. And then there were the warnings from the doctors of what my “new life” was going to be like. Both my husband and I will never forget the “relationship” talk. Both the neurosurgeon and the interventional radiologist and his PA explained some couples’ marriages do not survive major events like this. For better or for worse, we were up for the challenge.
I was released from the hospital on Good Friday. I was going to be able to spend Easter weekend with my nephew and his family. It was so good to be back into the real world, only I was rapidly realizing how much my life had been turned upside down. I chose as my first task to cook an Easter dinner. That required grocery shopping on the Saturday before Easter in a strange grocery store. Stressful enough but I was now discovering more deficits. Gone were my organizational skills. I couldn’t function in the grocery store. It was totally overwhelming. My husband had me regroup and make an outline of what I wanted to accomplish. The importance of lists started here. Gone was the spontaneity and I found the same confusion arising with cooking Easter dinner. I had to write down the steps of how to cook the dinner and found it very difficult to coordinate cooking three different things.
On the Tuesday after Easter we began the journey home. We arrived home more than a month after we left.
More and more deficits were presenting themselves. I had double vision and had to wear a special fresnel lens for one eye. I would have panic attacks when situations proved stressful. My first shopping trip to Market Basket sent me into a panic attack. I found visiting my high school and being in the halls during schedule changes left me hugging the walls as I walked. Sitting in a crowded church bothered me. Attending public events or party situations were difficult. Escalators are a major challenge. My mental math skills were gone. Talking on the phone was difficult. Short-term memory was affected. Some restaurants are no longer comfortable to me. Even going to the local movie theater was difficult. I never could find where I parked my car.
My life needed adaptations and the years have been challenging trying to find ways to cope with the newly discovered disabilities. Other than resigning my teaching position, I made up my mind that I was going to resume a normal life in its new normal way. I live with multiple timers in the house — an absolute necessity for cooking and operating the woodstove. Lists are a necessity, not just for shopping but I use them to organize my daily tasks. I use signs or notes to remind me when I’m doing long-term tasks. I have a laundry sign that I post when I put clothes in the washer. I carry earplugs in my purse and will use them at the movies, concerts or performances and sometimes even in restaurants. My most helpful phrase is taken from Sesame Street: “Walk backwards through your mind.”
One of the most helpful connections in my recovery has been my relationship with the Brain Aneurysm Foundation. This group was started in 1994 in Boston for patients, their families and health care providers to share information. I was introduced to this group from literature acquired at Mass General Hospital. Their website provides factual information about brain aneurysms. Through their online forum, survivors share individual stories. I used to visit this site almost daily. There are survivors from all over the world. As an extension of this, a group was started for Northern New England Brain Aneurysm Support. Monthly meetings are held in Concord. At our first meeting, I got to put faces to several of the storytellers from the online forum. There are also regional and national fundraisers for the foundation. Because of my hospitalization in March 2008, our sugaring season was shut down. I now donate a portion of each year’s maple syrup sales to the foundation.
Experiential learning has always been an important part of my life. Now I can say I have learned about brain aneurysms and their treatment options from firsthand experience. I am happy to be able to carry this message about brain aneurysms to others.
Did you know?
One in 50 people has a brain aneurysm, according to the Brain Aneurysm Foundation. About 40 percent of people who have a brain aneurysm will die. Four out of seven people who recover from a ruptured brain aneurysm will have disabilities. Women, more than men, suffer from brain aneurysms at a ratio of 3:2. For more information, see www.bafsupport.org.
Judy Unger-Clark lives in Rindge. She is an avid gardener, operates Sunflower Field Farm and is active in the Rindge Farmers Market. She is a fine arts photographer and exhibits in regional shows.