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Welcome to Brain Storms!
Posted on August 26th, 2009 6 commentsGreetings! When I graduated from Iowa State University in the mid-1970s, I THOUGHT I had my life mapped. I was too young to appreciate all the twists, turns, choices and changes that were in store for me. Confidence without wisdom seems to describe that stage of my life.
Looking back, I see that much of my hopes became real: I am a mother, a grandmother and, as of the beginning of summer, an empty nester. My creativity is still intact: I continue to knit, read, write, needlepoint, cook, garden and sew. As for my job? Over the years, I worked on newspapers, magazines, and newsletters—nothing too surprising given my journalism degree. I had to give that up after my brain storm. Now, like so many of you, I am a blogger. It’s such an odd-sounding word, isn’t it?
As new and unanticipated as blogging is to me, so is my life today. A couple summers ago, my brain blew up from a ruptured aneurysm. No one anticipated this catastrophic event. No one knew my brain was ticking to an end with 13 brain aneurysms. Even on the day of my brainstorm, no one looked at me and said, “That woman will probably be dead by nightfall.”
If it happened to me (and it did!), it could happen to anyone. One in 20 people will get a brain aneurysm. That’s a lot, isn’t it? Maybe you are like me and have already had a brain storm. Maybe you know someone who experienced a brain storm. Maybe you have a brain aneurysm and don’t know it, so your brain storm hasn’t yet happened.
I survived and I know now that I’m not alone. It’s time to talk about these ticking time bombs. It’s time to help each other get through our tough days and celebrate our good ones. It’s time to share our stories, laughter, worries, questions, advice and wisdom. We are not alone. We have each other. We are survivors and I look forward to hearing from you!
6 responses to “Welcome to Brain Storms!”
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Thanks for sharing your experiences, Barbara! The combination of your writing background with your own personal journey overcoming your aneurysm diagnosis and treatment provides a great foundation for this blog. I look forward to reading more from you.
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Brenda Johnson January 16th, 2010 at 22:10
Barbara, Thank you so much for telling your story and sharing so many of your symptoms and the issues you face. I am wondering if they fixed all 13 of your aneurysms or if they are observing any? I am 38, have been diagnosed with 6 brain aneurysms, a year and a half ago they coiled one, the other five they check annually to see if they are doing anything. I had all of the same symptoms, and kept going back to the doctor until they did an MRI and found the first one. (they found 1 more on the MRA, then the other four with an angiogram). For 8 months, they kept trying me on different migraine medications combined with various antidepressants. The good part is that they caught mine before any ruptured, but the bad part is that the symptoms are all still there after the coiling. The speech issues don’t come up quite as often, it’s very disturbing to think one thing and have the sentence come out half backwards, then try to correct myself only to say it backwards again! My temperature is always all over the place, I get warm so I will suck on ice cubes to cool down, then I can’t get warm. I have never found a site where the symptoms listed are almost exactly all of the problems I experience daily. This site is awesome…it’s very, very comforting to hear other people experiencing the same symptoms (helps to confirm that I’m not crazy, or at least that there are other similar crazy people out there! Lol) Thank you so much for sharing. ~Brenda Johnson
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Barbara January 19th, 2010 at 12:15
Dear Brenda,
I admire your persistence at getting an answer about what’s wrong. I was not persistent enough, obviously. The surgeons at the National Brain Aneurysm Center fixed all but one of my aneurysms. One was (and still is) too small to clip or coil. When and if it grows, my doctors will fix it. If you are nervous about your aneurysms, maybe you could ask them to review your charts and give you a second opinion.
The hot/cold temperature bounce drove me nuts. Not everyone gets that with aneurysnms, so it probably is related to location in the brain. I used to stand outside in 20 below temperatures just to cool off. My poor husband… he suffered along with me!
You are right about lost sentences being difficult. My husband would do a twirly (and annoying)motion with his hand — as if he could help me finish my thought. Honestly, I worried that I was getting dementia. My family doctor thought it was depression. Truly, it WAS all in my head–just not the way any of us expected.
We have a lot in common. Keep in touch!
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Brenda Johnson January 19th, 2010 at 21:10
Dear Barbara,
Thank you for answering me, I know exactly the hand gesture you are referring to…as if a twirly hand can make our brain spit out the sentence we were trying to say or find the thought it lost. Instead, if you reacted like I would…the hand would take over my thoughts and become instantly annoying. The thought would never return, the poor spouse would probably get the annoyed look, or a sarcastic retort that I would immediately feel bad about. Do they offer sarcasm management classes somewhere? lol.I hope you don’t mind my asking…and feel free to tell me it’s none of my business, but how big were your aneurysms…and how small do they consider too small to clip or coil? And..how often do they check the one they are observing? My email is crowe.asylum@yahoo.com if you would rather answer me there, or I am on Facebook search for the above email address, my name is Brenda Johnson. Thank you for being such an inspiration to everyone on this site. It’s really cool to be able to talk to others who have similar experiences with symptoms, etc. Thanks again! ~Brenda Johnson
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Barbara January 20th, 2010 at 13:33
We really ARE kindred spirits! And no, I haven’t heard of a sarcasm management class, but I’d sign up if it existed. Should we start one? Toe-tapping and eye-rolling should be considered part of the subjects covered.
I don’t know the exact size of each of my aneurysms. I DO know that sizes ranged from small to medium. One was referred to as “the big nasty.” I have absolute faith that my doctors here will always do what they believe is medically possible for every brain aneurysm patient. I hope you don’t mind that I’m punting your question to their end of the field.
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Brenda Johnson January 25th, 2010 at 00:09
Barbara,
A sarcasm management website would be easier…otherwise there will be too much driving involved. (I live 2 1/2 hours from St. Paul). Mimicking behaviors should probably be added to that list, too. lol. I don’t mind at all that you forwarded my question, I have emailed the neuroscience nurse who received the information and now I’m waiting to hear back from her. I appreciate your help, humor and stories. Keep in touch, I’d like to hear how you’re doing. Thank you! ~Brenda
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Anne Sonnee September 1st, 2009 at 18:35