I had a professor ask me if I would write a paper about my AVM story to be published after I had wrote a paper about miss information in the media and used an article about the eagles football player who had an avm. My paper will be published June 15th, but I attached a copy of my paper because I have had a few people ask to see it363-MyAVMStory.docx (16.1 KB)
I had the same experience with people in my life. I wasn't surprised that friends started dropping out of my life after my AVM bled but I was surprised by which ones couldn't handle the situation at all or even fake support me with a quick phone call or even a brief visit to my 2 months in the hospital/rehab. Only 2 people came to see the baby I had only 4 months post crani but I think they only came to verify that he wasn't born retarded or deformed.
Like you, I experienced a few instances where people thought I was making it up. One person said I was "milking" having a stroke! Who says that to you while you're pregnant, relearning how to walk, facing brain surgery and worried about how many days of LOA you legally have left before you're counted as absent from college (plus I was worried about whether or not my husband, father of my children, would be able to handle our "new life")? This person also told me I was creating more drama by NOT having an abortion. Who the hell says that?
It seems to me that the people around AVMers complicate the situation even if it's just that they simply prefer to deny your life-threatening condition than to face the fact that you are dealing with a life-threatening condition. Some people would rather think you are making up random diseases or conditions for attention than to think that you are in pain, living in fear or that you might not wake up tomorrow. It is fear, I think, that makes people around us seem so careless and nonchalant about our AVMs, that and like you said misinformation or just being uninformed.
A sidenote: what kind of neurosurgeon doesn't know about AVM's??????????? WTF IS WRONG WITH THAT GUY????? He should go back to school, maybe update himself. That's like....a veterinarian not knowing a turtle can gets it's head stuck in its shell or how to get it out! I'm glad you got a second opinion and I'm hoping the best for you. I had a craniotomy but I've heard and read a lot of success stories with the gamma knife. Congrats on getting your paper published!
Great Story Erin.
If you are still in Kollig (sic), get to your school's disability office. Our son who had epilepsy went to the office at the state university. When he walked out of the office, for each of his classes, he had a note taker, a tutor, permission to have more time on tests, and the ability to walk out in the middle of a test if he had a seizure, and retake the test. He didn't need a lot of that, but it was available.
Oh, and it was FREEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE.
Just cuz you don't limp or whatever, if you have an AVM, chance are you aren't 100%, so take advantage of the support of your college.
Best wishes, Ron
Thank you for the advice I have already seen the disability office and have extra time on tests
Erin, Thanks for story. I enjoyed it.
Erin, I would really love to read your paper but I can't seem to get it opened. I have MS Word 2002 and installed a file converter from MS but to no avail. Could I impose on you to attach it in another format, such as PDF? WTG on getting it published!!!
WOW! I am so glad you shared this. My son's AVM bled a year ago -- it will be exactly a year on June 12th. He had been home from his freshman year at Cornell University in upstate NY for three weeks. He had always had, what we thought were migraines. No one ever recommended an MRI. His bled in his cerebellum. He lost all coordination and balance, from head to toe. He lost his ability to swallow, walk, write -- everything, from large motor skills to fine motor skills. He's about 75% of the way back, I think and doing better than most medical people thought. He has a lot to go back to. We hoped that he would be able to return to school this coming fall, but that's not likely. He may make it after the the winter break (we hope).
He experienced the same thing with friends and acquaintances, which has left him very cynical and bitter. Some of who he thought were his best friends, NEVER contacted him throughout the whole ordeal! And the people who have sent letters, cards, teddy bears, gift cards, etc, are his newest friends from Cornell. The horrible thing is that he went to a boys catholic high school -- you would think those friends would have been the most responsive. The ones from high school that came to see him, weren't even the friends he hung out with -- they were just boys who knew him and had known him from class or band or something.
Another funny thing is that he was (is) pretty sure he is going to major in linguistics (neuro-linguistics to be specific). He still hasn't regained perfect speech yet (the indicate muscles in the tongue and throat were affected). I remember him telling me that he had talked to a professor about this interesting sub-area of linguistics. I'm sure when he is back at school, he will have the opportunity to write about his experiences recovering from his AVM bleed.
You are SO fortunate to not have had a bleed. I hope it never happens. It's been the scariest year of our lives. I wish you the best of luck with all life has in store for you.
That is a wonderful story! Good job and congratulations on all of your accomplishments! Best of luck to you in the future!
I just had my gamma knife yesterday so still have an awful headache. In a couple of days I will try posting it in a different format. If I remember I will inbox you to let you know when it is posted
Oh, please, don't worry about it, rest and recoup. :)
Your story is so similar to mine, my avm was in my spine but the rest is the same. It is so nice to know that you reacted just like me.
Because some people made me feel like I was exagerating, making things up, because they were being tired of my pain I did wonder and told myself "I should be stronger, I am too weak, I need to toughen up" Of course I couldn't, it was so overwelming not knowing what AVM was and trying to do my research on the desease and being scared about the fundings. Of course it doesn't help when the angiogram specialist told me that no matter what I was going to be paralysed and no surgery could do anything. After that I was shaking from fear at night.
My story shows just like yours that persistence, finding the right specialist, doing your research does pay off at the end. My husband and kids were fantastic, I was very blessed that way. I won't name the ones that were not very fantastic and that yelled at me and told me "but Emmanuelle you don't understand the stress you are putting us under, you have to stop" while I was the one sick and having to make surgery decisions and leaving in extreme pain for a year and 1/2 not being able to stand for more than 2 mn, walking was ok as long as I didn't stop but for no more than 10 mn. Laying down was the best. It is hard to raise 2 kids, go to work and take care of a house when you are lying down most of the day.
You are so young and so beautiful I wish you wonderful things for the rest of your life, you deserve the best for sure. Thanks for sharing your story, we need to let other people know that it will be ok at the end. I ski now every week-end in the winter, bicycle and walk. I cannot do all the things I used to do but this does not matter at all. I am pain free.
I loved your article and I am very happy that you are trying to inform the public about our conditions. Mine was near my optic cortex and actually ruptured. That is the way that I found out I had one! I hope that yours never causes any more serious side effects and that your surgeries go well. If you need anyone to talk to, I'm here!
for anyone that couldn't open the word document hear it is
My story starts in May 2011. I was at my yearly physical and mentioned, as an after thought, that I had been having headaches. My doctor thought that they sounded like migraines, but decided to send me for an MRI to make sure my headaches weren’t being caused by anything serious before he prescribed me anything. The day after my MRI was the day my life changed. The doctor called me with my results; my headaches were caused by an arteriovenous malformation, otherwise known as AVM. They scheduled an appointment with a neurosurgeon a few days after the MRI. I felt lost because I had never heard of an AVM and had no idea what it was. I immediately used the Internet to do my own research before my appointment. It was through my computer that I learned how serious AVM’s are. I had a mass of tangled veins and arteries in my brain, that didn’t have the capillary beds that typically separate the arteries from the veins and are present at birth. What scared me the most was learning that AVM’s could cause aneurysms, seizures, strokes, and could rupture, causing a brain bleed. By that point, I was scared. I didn’t understand how I could have gone nineteen years without knowing about this.
After meeting with the first neurosurgeon, I felt fearful for my life. The first surgeon told me that he didn’t know enough about AVM’s and he wasn’t going to touch me, He felt it was too deep and surgery wasn't an option. I had a seven-centimeter mass of tangled veins and arteries located behind my occipital lobe. He didn’t think there was anything that could be done about the AVM. I was sitting there even more scared than before as my mom told the doctor that that wasn’t an acceptable answer. Because of my mom’s insistence, he decided to send me to another neurosurgeon.
We went to our second neurosurgeons appointment a few days later. This doctor was more reassuring. I learned that he could treat my AVM and that he had successfully treated many other AVM’s in the past. He was more confident about my treatment options then the first surgeon. I was still overwhelmed, but felt confident that he would be able to help me. He told me that a craniotomy was out of the question. He felt it was too dangerous of a procedure due to the size and location of my AVM. My next option was having a series of procedures called embolization. An embolization is when they go into your femoral artery with a catheter and glue off the blood vessels involved with the AVM. The glued blood vessels will die and the artery is forced to reroute its path. Therefore, if the procedure is successful, the AVM will shrink in size. After the embolization’s are completed, I would have a gamma knife radiation treatment. During the gamma treatment the doctor will shoot 201 radiation beams to the center of my AVM; which will slowly shrink the rest of my AVM. I have since had five embolizations and I am scheduled to have gamma knife radiation this June. My seven-centimeter AVM is now down to one centimeter. Although I am still at risk for a brain bleed or an aneurysm, my biggest concern, due to the location of the AVM, is blindness.
Throughout this journey, I have learned a lot about myself and the people around me. People’s reactions to my diagnose have been mixed. Some reactions are extreme and dramatic, believing it was going to be deadly. Other people thought it was no big deal because I looked fine or that I was making it up because they had never heard of it. One of the side effects I had from the embolization’s was hair loss. It made me feel very self-conscious. I felt that people were judging me, or assuming that I had cancer. It’s hard being a second year college student explaining to everyone you meet why you are not partaking in the activates going on around you. I have been told I couldn’t do any physical activates, which included my love of dance. I have had to balance working, going to school full time, a college life and my treatments this past year. It hasn’t been easy, but I never used my AVM as an excused, no matter how hard it was on me to keep on track. I have learned to be more comfortable in my own skin and not care what other people think.
When I reflect on this past year, I am surprised at the people that I thought would be there for me weren’t, and some of the people I least expected to be there for me were. I’m not sure why the people I thought I could count on weren’t there for me, but I am moving on. My treatments are far from over. I am going to continue to fight, go to school, work and stay strong. I will surround myself with people that I can count on. I am very grateful to have my family by my side. It is because of their support, I know that in the end, my treatment will be successful.
Hi Erin, my name is Leticia Freiboth. I just wanted to let you know that I read your story and found it so inspirational. I felt as if I was reading my own story, from locaton of AVM, fear of visua loss, balancing work, school and family, hair loss, and finding out who your friends were when you were in time of need. Thank you- someone DOES understand. My diagnosis was in 2001 and my biggest fear was not being there at my sons first birthday, well in a couple ofmonths he will be 12 (I can't believe it). I wont say it's been easy, I did have 6 embolization procedures (mine was inoperable), and 4 years ago a stroke, I have recently developed new symptoms and the doctor are recomending for me to have a follow up angeo (my last angeo is when I had my stroke-it's a possible side effect) so needless to say I a little scared. Anyways thank you for sharing your story, and congrats on having it published.
Congratulation Erin ... thanks for sharing your avm problem and congratulations ... I read your story and I felt stronger.
Thank you so much for writing about this. I recently found out about AVMs in June when I was diagnosed on my 20th birthday. I recently had to tell my cheer coach that I could not be on the team, which was the hardest thing I've had to do. I'm worried about balancing this and my junior year of college as a psychology major, but I have more faith that everything will be okay.