Brain Aneurysm Stories
My Family Changed Forever in One Day
This is the story of my mother's aneurysm journey. I feel compelled to post her story because I need support from people who have had similar experiences and I want to be able help people that are going through what our family has been through. I am not minimizing anyone else's experience, but my mom and our family has endured a very atypical and rare experience regarding my mom's aneurysm.
My family's story begins in July 2009 when my mother was in a car accident that she walked away from. Her car was totaled and she had some minor residual effects from the car accident. She went to the doctor thinking she had a concussion from the accident, which she did, but a 15 mm aneurysm was also discovered above her pituitary gland. She decided to have the surgery and we weren't sure if coiling or craniotomy would be the method. On August 25, 2009, Craniotomy was decided upon by the surgeon based on the complexity and size of the aneurysm.
She went in for surgery on August 26, 2009. The events following the surgery are things I feared my whole life and seem almost unimaginable. I always feared something happening to my mother, even as a little child and my worst nightmare began to come true. I am extremely close to my mom and always have been. I rely on my mother for so much and she is my best friend. After the craniotomy surgery we believed my mom would be able to go home in five days and recover.
She suffered a stroke in her frontal lobe within 24 hours of the surgery. She would not wake up and her brain began to severely swell. A crainectomy was performed, but not in time for her to incur secondary damage on the right side of the frontal lobe area. This secondary damage is more severe than the stroke damage; we have now come to find out. Hypothermic treatment was induced for three weeks so the swelling could be contained and hopefully no more damage to her brain would occur. Unfortunately her brain began to behave as a ruptured aneurysm and vasospasm set in. This still baffles the doctors today because she did not have a ruptured aneurysm; she elected the surgery. She was treated as a ruptured aneurysm patient and the vasospasms occurred for over 21 days. Typical life of vasospasm is 14 days. A shunt was put in after she came out of hypothermic treatment as the swelling subsided. Her skull was put in as well and she was off to a long term acute facility because she was not ready for rehab because she was barely awake.
She was in rehab for three weeks and I received a call from the doctor. Fluid was leaking out of her head and she needed to go to emergency due to a buildup of fluid and air in her head. She went back to ICU and it was discovered she had an acute bacterial infection in her head called pseudomonas. This was on November 13, 2009 when she was admitted back to ICU under the care of her neurosurgeon. Surgery was performed for the fifth time to remove foreign objects and any infected part of her head. Another crainectomy was performed and the right side of her skull was removed and thrown out because it was infested with the infection. For four weeks the infection was aggressively treated and she seems to have no signs of infection. She had her 9th (I have lost track of the number) brain surgery on December 30th to put in a man made skull. She has developed hydrocephalus and is still not able to talk, walk, or eat.
She sleeps a lot, but has moments of responsiveness and awareness. The doctor has told me she could remain as she is, but it is doubtful. He said she will be a different person because the damage has affected her motivation to want to move and talk and engage in complex activities and her impulse control is also shot. As a result, she will not be able to live independently ever. This is very hard to grasp as I want to believe she will emerge as the mother I knew in time and surprise everyone, but I also need to prepare myself for that not happening. It is very hard to get used to the idea that no matter what our family is changed FOREVER, even if my mom did make a 100 % recovery.
If anyone has had a similar experience I really could use some support. I am interested to hear success stories of people proving doctor's wrong. I love my mother and I have not had a conversation with her in almost five months. Any support is greatly appreciated, as I will forward it to the rest of my family. Thank you for this website and all the support and I will update this periodically as we move through this crisis. Our family is forever changed through this experience.
Update FEB. 6th, 2010
Here we are 1 month from my original posting. My mother finally was moved to a LTAC last week. The doctors have said she in MCS(minimally conscious state) and she has gotten psdemonis in her spit as a result of the trachea and she has cdiff from prolonged use of heavy antibiotics. She failed her first blue dye test and she no longer needs oxygen saturation, just the mist. This nightmare goes on and what quality of life could she have? I am scared, depressed, and wonder how much this experience will change her. I feel as if I have lost my mind and this is some kind of bad dream. My mother as I knew her is probably gone forever. If anyone else can speak to this experience without responding I don't know or it's different for everyone, I welcome your response. I get told these two famous responses regularly and I am searching for stories of success in order to empower myself and regain my positive outlook. Thank for listening as I am angry and feeling sorry for myself and my mom
Update Feb 13, 2010
Things are better with me and my mother since my last posting. She has been started on Ritalin and lots of therapy. For now we are all stable and focused on her recovery. She has a great team of doctors at Kenfield rehab in Marin County Ca, treating her. She responds to commands intermitenly and blue dye tests are improving. My positive outlook is back and I will do whatever it takes to help my mom get well.
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Nothing on this website should, in any way be considered medical advice. It is presented as general information only and is not intended to diagnose or treat any type of medical condition. I am not a doctor, nurse, or any other type of medical or health care professional. Nor am I an expert on Aneurysms. However, I am an expert on the experience of having suffered a ruptured Aneurysm and the subsequent treatment I received. This site should not be considered to be, nor is it intended to be, a definitive source of information regarding Aneurysms. I have made every attempt to ensure the accuracy of any information presented here, but again, I am not a medical professional and my own interpretation of this information could be in error.