Tell Your Story
Share Your Story and Raise Awareness
How did you become involved with VBF? Why do you feel it’s important to raise awareness for vascular birthmarks and the related syndromes? Please share your story with us. Please email your photos and story to VBF at firstname.lastname@example.org
My name is Marlene Klingeman and in August of 1999 at age 37 I suddenly suffered a hemorrhagic stroke that nearly ended my life. My story begins 8 years prior to that day when I began to complain to severe migraine headaches. At that time I was attending university and taking a tough science major, molecular biology and microbiology, so it was easy to blame my headaches on stress or tension.
My headaches had all the classic symptoms of a migraine, the aura, the light sensitivity, nausea, blackouts and the inability to get rid of the headache with medications. Sleep was the only way to cope. The headaches never went away - only the level of intensity fluctuated. There were days I awoke with a full blown headache and nausea but still had to keep going to make it to my next class or to drive my young daughter to elementary school. My headaches interfered with every aspects of my life. I was known as the grumpy person, easily irritated or quick to lash out. At that time I had recently moved back home to live with my parents as I was a struggling single mother going back to school.
I saw a doctor for the headaches but migraine medications were often prescribed, which never worked. My dad on occasions offered to massage my neck to give me some relief and it did temporarily. Studying had become a so difficult, it would take me twice as long to capture a concept because of the constant distraction of the pain. I had my first MRI but it showed no signs of abnormalities and no indication of a possible cause for my headaches.
The headaches became worse. I began to have blackouts. I remember early one morning I awoke to use the bathroom. I sat down to use the bathroom but I knew nothing after that point. I had blacked out on the toilet, fell into the bath tub and hit my head on the ceramic tiles. After regaining my consciousness, the headache was so excruciating I had to stay in bed most of the day. The headaches lasted for almost 8 years.
I graduated with my degree in December 2007 and was encouraged by my fiancé to move with him to El Salvador where he worked for a Dutch multinational company. I needed a break not so much from my intense school schedule but from the headaches that I agreed to pack up my daughter and move with him temporally. I finally remarried the following December in a beautiful intimate setting in Orlando family with our friends and family present. That summer, we visited the Caribbean island of St.Vincent, my place of birth and island hopped many of the Grenadine Islands. During our vacation, the headaches were more intense than normal but I was determined to not complain and just focus on my vacation with my h=new husband and daughter.
August 1999, we returned to El Salvador to begin new school year as my daughter was set to begin sixth grade. By this time we were beginning to get a better grasp of the Spanish language and acclimating to life in El Salvador. I was fortunate enough to make some great friends. Once the 1999-2000 school year was on session, I took advantage of my time to learn Spanish with a tutor and get to know more of the country and how I could assist. I got involved in charities such as CARE and UNICEF to give of my time in helping others.
One day late August 1999, my friends planned a picnic to a park that has Mayan ruins. As we sat under the huge oak tree, we shared in special moments of laughter as we ate our picnic lunch. That day I did not have a headache. I thought to myself how strange I had no headache. I had grown accustomed to them. That night I went to sleep without a headache. But it was the calm before the storm that was about to descend on me. At 3 am in the morning, I suddenly awoke from my sleep feeling as if someone was shoving a knife in my head. There was an explosion in my head, I felt the crawling sensation in my head as if blood flowing but nothing was visible. I screamed out loud to my husband lying beside me. I got out of bed to make it to the bathroom but began vomiting and could barely make it due to the dizziness.
My husband rushed me to the hospital where a CT scan confirmed a hemorrhage in the area of my left cerebellum. My brain was swollen and they needed to relieve the pressure on the brain. I remained in intensive care in the hospital in El Salvador for 8 days, in and out of consciousness until the swelling of the brain had subsided enough to fly to Orlando, Florida where my parents live. There was still no official diagnosis of my condition as equipment was not available to perform an angiogram on me. Once I arrived at Florida Hospital in Orlando, an angiogram confirmed that I had an AMV that ruptured.
An AVM, arteriovenous malformation is an abnormal mass of blood vessels that weakens with increased blood flow, which can eventually rupture. They are very rare and occur in less than 1% of the general population. I was part of that 1 %. The only option for me was brain surgery. Mine was a birth defect I was unaware I had and the headaches were signs.
I am sharing my story to encourage those with severe, recurrent headaches to find a neurologist who can give you a thorough exam to determine the underlying cause. Because my AVM ruptured I was at a much higher risk of dying or paralysis. It was a surgical emergency. There was a titanium plate that was fitted over the area, which gave me much discomfort over the years and had to have it eventually removed. Today I am a healthy woman, full of life and enjoy helping others to live fulfilled lives. I
Audrey Marlene Lewis
VBF has networked over 35,000 children and adults into treatment
Tyler Salvador and his twin sister, Shaine.