When Will It End??

by Suzanne Thompson, Ontario Canada

On August 23, 2002 I had taken my Mom to the mall to get her out of the house…. you see my Dad had a brain aneurysm hemorrhage September 21, 1998 and she is his sole caregiver. We had a lovely time at the mall with my husband and 2 children and on the way home my Mom said how much she had enjoyed being out for the evening (something she doesn’t get to do often)…. but I had a very strong feeling in my stomach…. something was wrong but I didn’t know what.

When we pulled into my parent’s driveway… I saw my sister’s truck… well that was it… something happened or else she wouldn’t have been here because my sister-in-law was watching Dad… something bad must have happened. You see my Dad has 2 untreatable aneurysms so I just assumed that another had burst and my Dad had died. I could not have been more wrong.

That turned out to be the worst day of my life… it turns out that it was my beloved older (oh how she hated that…ok ELDER) sister that had died… she was 43 years old, had a 16 and 19 year old and a husband of 24 years.

She was the best sister that anyone could ever had asked for, always there for everyone, willing to drop everything in a heartbeat to help anyone in need. She was a marvelous seamstress that made most of my clothes growing up and for all special occasions, and had also begun making them for her nieces and nephews. My daughter had never had a store bought Christmas dress until last year…. as I stand in the store weeping at having to purchase a store bought dress that would never measure up to Deb’s Creations! My kids had never had a store bought Halloween costume either. She was taken by a BRAIN ANEURYSM… 5 years ago I could not have spelled aneurysm, now it haunts my days and fills my nightmares at night.

It has devastated my family and me. My sister is the 6th in my family to have an aneurysm (4 confirmed 2 unconfirmed “strokes”)… after my Dad’s two doctors told us “nah they aren’t hereditary!” Well because we foolishly believed the doctors, my sister is now gone.

Over 30,000 people in the US alone die from brain aneurysms each year and let me tell you… a large number of them are hereditary. Now the rest of my siblings and I have been tested, and are clear for now. We will continue to be tested every 3-5 years.

I am determined…THIS WILL NOT take anymore of my loved ones… we know now and are here to fight back, we won’t be silent any longer. IT ENDS HERE.

To the others that have lost loved ones to this monstrosity, my heartfelt sympathies to you and your families… PLEASE honour your loved one’s memories and get yourself and your children tested… it is the least we can do.

I miss my sister so much every single day, I would do anything to have her back and hear her laugh… hug her and talk with her on the phone for our 3 hour marathon gossip sessions. Just one more time to say, “Geeeez Debbie is loud”! Holidays and special occasions are not so special anymore… there is always something missing, that something is my sister. I cannot save my sister but I know that she is with me now and would want me to be strong for her and pass on the knowledge I have learned too late.

PART 2

When? When will I get a headache and not worry that it’s something more? When will I get the flu and have it be “just” the flu? The answer to that is probably never again.

In September 1998 our lives drastically changed. My dad had had a headache and “the flu” for several days when I took him to the doctors (he was unable to drive himself because of the pain and nausea). The dr told him to go home and take some aspirin because it was just the flu…. he never looked into his eyes or took his blood pressure. Ten days later he still wasn’t any better and was in fact increasingly worse. We made an appointment to go back and see the doctor later in the day, but he never made it to the appointment. On September 21 he experiences “The Worst Headache in his life”… he had a cerebral aneurysm rupture. His brain was hemorrhaging. He was given a 3% chance of surviving the night, never mind the odds or surviving any surgery!

At the time of the very first ER trip we said to the attending physician “you know…. his sister also had a brain aneurysm. Do you think this could be hereditary?” He chuckled and replied that we were “grasping at straws,” it was just an unfortunate fluke. We left it at that. My Dad was operated on 24 hours later.

After severe complications including meningitis, encephalitis, hydrocephalous, staphylococcus infection, pneumonia and others, including having to have a shunt inserted 3 separate times. He spent almost a year in and out of hospitals and rehab centers. He DID make it, not only through the first night but also through 4 brain operations!

My Dad now has to be cared for 24/7. He has no short-term memory at all, which affects every aspect of daily living. My Mom is his sole caregiver, which raises so many other complications and problems as any caregiver knows. We were very fortunate he survived, and although he will never be the same again we have got a second chance with our father.

BUT the story doesn’t end there. August 23rd, 2002 my world would drastically change again. While my sister was vacationing at a friend’s cottage, she had a cerebral aneurysm rupture. Too far from hospitals, they were unable to save her. My sister was dead at the age of 43. How could this happen? That was the third person in my family for sure…with research I found out it was actually 6!

The last five years I have basically dedicated my life to finding out the How’s and Why’s? The info is staggering. The annual prevalence of ruptured brain aneurysms in the U.S. is in excess of 30,000 per year! Approximately 2 million people in the U.S. have unruptured aneurysms! After a rupture 50% die outright, as did my sister Debbie. 50% of the survivors die within one month of the rupture. Of those that survive, one-third recovers with some deficit, one-third with substantial deficit and the final third may require institutionalization for the rest of their lives. They most certainly CAN be hereditary; my family is proof of that and so are many families that I have met on this journey for knowledge.

I want to inform people about cerebral aneurysms…warn them that if it is in their family that they need to be tested. If you have had an aneurysm, your siblings and children must get tested. I have three remaining siblings and we have all been tested and are clear for now. We will continue to be tested every 3-5 years.

The chance of surviving an aneurysm with minimal deficits is far greater before rupture then after. Taking care of it before it takes care of you is the key to survival. I have enrolled my family in a study being done at the University of Cincinnati called the Familial Intercranial Aneurysm study. They are trying to find the genetic link, maybe a cure will be found because of this study, and hopefully many lives will be saved.

I am working with the Brain Aneurysm Foundation based in Boston, MA to host a symposium on April 25th, 2004 at the Newmarket Community Centre from 2-4pm. I will have info from them and the Heart and Stroke Foundation, including 2 short movies about cerebral aneurysms. I am also going to Boston in May to do the Arterial Challenge Walk for Awareness, hosted by the Brain Aneurysm Foundation, and hope to collect sponsors during the open house/symposium. A survivor and myself are going to appear on a local cable show called “Insights” on April 7th, 2004 at 8:30pm to talk about awareness and the symposium.

My efforts to spread awareness are not going to help my Dad or my sister…. but hopefully with education and awareness lives can be saved and families spared this tragedy and devastation.

Sincerely,
Suzanne Thompson