Welcome to our blog! I originally started this blog in November 2010 just prior to having a major brain surgery to remove a large bleeding cavernous angioma from a deep part of my brain. You can best understand the gravity of our experience by reading the first several entries.(Nov 2010-Dec 2010) I wrote the first one and my sweet, adoring husband, John, wrote the next several (while I was too sick to do much of anything) that documented surgery, immediate recovery, and our reaction to the surgery complication (stroke)that was revealed 2 days after surgery. This recovery process has been difficult but we are making it. We appreciate all the kind words of encouragement we have received and we would like to thank everyone that has participated in helping us along this difficult journey. Also, if you have any questions about my personal experience, please leave them as a comment or contact me directly at thankfulforeveryday@yahoo.com and I will respond although I am not a doctor and this is not a replacement for medical care or advise. Please ask a real professional, or probably several. :) I hope to be able to help at least one person along the challenging road of brain surgery and recovery.

Monday, January 16, 2012

Spreading awareness about cavernous angiomas

Since being diagnosed with a cavernous angioma in September 2009, my life has changed greatly. I never really had a "cause". Many people are touched by one thing or another along their path of life and they get motivated to make that their "cause". While I had been touched by many things, no specific thing moved me like this diagnosis and all the emotional ramifications that this diagnosis created for me. In finding Angioma Alliance, I have also made dear friends that share in this dreadful diagnosis...many of them have it much harder than I do/did. I was blessed to hopefully only have one bleeding mess in my brain. Some of my friends have multiples or they have them in a location that prevents surgical treatment. For many of my friends there is no cure yet. :( I hope that will change in time, and I intend to do my part to help be a part of the cure. I have taken on trying to spread awareness about cavernous angiomas as a part of trying to better the lives of "us" afflicted with this condition.  While I...hopefully.. no longer have a cavernous angioma I will always identify with those afflicted. I have been there/done that! I understand how hard it is to live with the uncertaintly, the bleeding, the seizures, the deficits, the surgery, and the recovery.
I am not a professional writer...I was a math and science lady prior to all my brain problems. Writing has never been my thing. I didn't start writing until I found a "cause" or rather my "cause" found me. I originally wanted to be a doctor but changed my mind many years ago. My degrees and work experience are in psychology and nursing. With that said, I have been writing this blog since just prior to my surgery. I originally started it to keep friends and loved ones informed...and as a much needed source for positive feedback and encouragement during my darkest days...but it has become something very different. It now is my voice for spreading awareness about cavernous angiomas and sometimes stroke recovery. While professional writers probably cringe while reading my blog...fragments/run-ons, grammatical errors, punctuation all wrong, as well as my casual writing style...my writing is anything but professional. Proper writing aside, what I am presenting is my side to the story. My experience with cavernous angiomas, brain surgery, stroke, and stroke recovery. As part of my continuing push to spread awareness, I sent my story to a few publications...hoping they would publish it and help to raise awareness. The first place I sent my story was to Stroke Connection. It's a magazine put out by the American Heart Association. I submitted my story 9 or 10 months ago and they called a few months ago letting me know they selected my story. I am never short on words and my story was extensively edited down to a mere 500 words. The published version varies dramatically from my submitted version, but non the less here it is! Stroke connection article
While my article was edited extensively, I still perceive it as a win for my cause and I hope it is only the start of great things to come. I would love to see the day when physicians actually know something about cavernous angiomas and treatment involves something less invasive than crainiotomy. I will continue my advocacy for this condition and my dear friends afflicted with it.
   

19 comments:

  1. Elizabeth,
    Thank you for representing. I, for one, am proud to have you as a spokesperson spreading the word about cavernous angiomas.

    In this (math/science) person's opinion, you are a great writer. As far as blogs go, an informal tone, stream of consciousness style is great. Reading your writing has the feel of talking to a friend. A friend, I know that I can count on to remember to stay positive. Thank you!

    Alyson

    PS I am having trouble opening the link to your story. Could you send me the link at alyvega84 @ gmail.com ? Thanks

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    Replies
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  2. Never mind. I got to the article. Nicely done!

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  3. Thanks Aly! I plan to keep trying to do my part to spread awareness about cavernous angiomas...this diagnosis has changed my life and needs greater awareness and a better cure! :) Our brain surgeries carried significant risks and created significant changes to our brains...we need a better solution.

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  4. Editors can help you with the mechanics of writing. What they can't do is give a writer a voice. You've definitely found your voice which engages me everytime you write a post. Having survivors push for a cure is important!

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  5. Hi Elizabeth,
    Thank you. I found your article in Stroke Connection. I am 40 now. I have had three strokes...possibly all CA..never really got definite terminology by docs. First one at 25. Second and Third in my 30s both during my two pregnancies. I think if the doctors were more aware about CA and pregnancies. I would of been warned after the first stroke and pregnancy. But I dont regret my second child despite my challenges. You are doing a good thing, an angel you are!
    You have helped me. Thank you. I have felt "alone" even though I have tons of friends and family. It is nice to know there is a mom out there that understands. –Levilyn, mom of 2

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  6. hi my name is Shanika and I was so touch by blog. i have a question to ask u. My mother had a stoke do to hbp and she also deal with a sezier. It happen two days before christmas,but anyways i dont know what to do to get her to her old self> she has 4 grands babies thats needs that grand love, but all she do is laid in the bed and she dont want to eat. What should i do to get her back to her old self..

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  7. Rebecca, thank you!
    Levilyn, I sent you an email. I'm sorry you share in this terrible diagnosis, but glad you no longer feel alone. Angioma Alliance.org is a great place to make friends that understand angiomas. There are a ton of really nice people all trying to navigate this illness. Education is key to feeling better and getting good treatment. Best wishes.
    Sexy, I'm sorry to hear about your mom. I'm not a doctor and only speak from experience, but getting her evaluated by some expert doctors and hopefully start her on rehab is a logical first step. Recovery can be very difficult, but worth the work many times over when gains are made. I wish you and your family all the best.

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  8. Hi! I am 3 months post op from brain surgery to
    Remove my angioma. I am wondering how long you took to recover? I am still experiencing pain daily and still having some cognitive issues (not often but often enough to aggravate me). Just curious

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    Replies
    1. Congratulations on your successful surgery!! My recovery is on-going...so far a year and a half, but I noticed rapid improvement for the first 8 or so months. I'm still seeing improvements now... just slower. Fatigue is my WORST deficit. It is still really bad, while everything is else is much better. I had minimal pain. My incision would get sore at night, but tylenol was enough. That probably lasted a year. If you are having "cognitive issues" I would highly recommend cognitive therapy, sometimes insurance only covers speech therapy, but the therapist is often trained to do both. My speech therapist was awesome. My cognition is not just as it was, but I am so much better. I keep working on everything and hope someday I will be all better. Best wishes.

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  9. Well, I wish I was told the diagnosis before meeting with the doctor. I suppose it is evidence of their sensitivity, not wanting to alarm me over the phone. However, I would have preferred to have time to research before meeting with them, so I would have helpful questions rather than stupefied awe.

    (I guess lesion's location - so far as I recall, appears to be very close to areas of the brain which are related to planning I've guessed... Or was it the ventromedial area related to guessing? Perhaps it was something to do with memory...)

    My seizure was potentially caused damage in areas of my brain related to planning and I failed to prepare to ask good questions of the neurologist. It seems patently my fault, but this patient is impatient for answers. I must seize this occasion to learn something about myself before a vessel pops and I am forever satisfied with ignorance.

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  10. What area of the brain was your angioma found - were you in the hospital long? Had you had any seizures activity prior to your diagnosis? My husband has been diagnosed and is facing surgery or gamma knife treatment... Please feel free to email me shayneeg@bellsouth.net... Good wishes for continued recovery and good health !

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    Replies
    1. You can find all ur answers by reading the blog but, I was in hospital about 2weeks all together. One week getting stable, acute rehab about a week. I had tons of partial seizures (20+/day prior to surgery, none now), mine was big 4cm so it overlapping many areas, centered in insular cortex/basal ganglia, etc. Research before gamma knife...controversial in US for cms. Join angioma alliance, you will get lots of feedback from helpful members. Angioma.org go to forum or there is a Facebook group. I don't do Facebook, so I'm not on there. I help moderate on the AA forum though. Best wishes for ur husband. It's scary, but he will do great!! Find an expert surgeon and get multiple expert opinions....best advise I got.

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  11. My son is nearly a month post-op from his surgery to remove a large cavernous malformation from his right frontal lobe. He presented with seizure activity prior to finding the CM, and it was a battle to get any scans done in the first place. After his first MRI, we were told that he had an amniotic tumor, and that there was a big possibility it was cancerous because of his age (he is 2.) The diagnosis of a CM was a blessing for us, because it meant no chemotherapy. I am anxiously awaiting the results of his most recent MRI to make sure we got it all and see how his brain is healing. We were released from the hospital just 3 days after his surgery.

    ReplyDelete
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