After having a tough start to this year I have been blessed to even have these words coming out of my mouth that MY AVM IS GONE! After open brain surgery, embolization, and Gamma knife surgery and a horrible staple job (my scar from the incision)i can breath a bit easier today. My neurologist found minor spots on my MRI and cat scan but nothing to worry about, but no sign of my AVM. This has been a great blessing for me this year and gives me hope for a fresh and adventurous new start on life. After having seizures and mini seizures, my news definitely felt like a huge weight has been removed from my shoulders. I can now go back to my regular lifestyle soon, in moderation because i still take my Keppra and my doctor told me we still have to monitor my seizures as we slowly take me off the Keppra. I am frightened to stray off the Keppra because last time i did that i had more seizures then ever. I hope and pray that this time around as i lower my dosage and eventually stop the medication, that i wont experience any seizures. This experience in my life has given me patience and a view on life that, you can not take anything for granted and every moment counts in life. My AVM story may not be as severe as some people on this site, but i am glad that i got the support here and from my family and friends to strive to fight this and be able to live this mysterious life that awaits me.
I want to thank everyone on this site for the support and positive thoughts and advice. This site is as close as a real family is and i love that. I want to send a special Thanks to all the people affected by an AVM in any way that give information and help around the clock and give awesome information to people like me and many others on this site. You guys ROCK!!!
I hope one day that many people on this support system can say the same words i can today. Every ones story is a struggle and a tough journey to go through, especially with family, friends and loved ones. I will continue to pray for everyone on this support group and wish nothing but the best for everyone and their situations, and encorage them to continue to fight strong and never give up hope.
Hopefully now i can look back at my list of things to do that i couldn't do before because of my AVM!!
Congrats Crystal. That’s great news re: the AVM. You covered every sentiment I have about the wonderful helpful people on this site. When I got my good news many friends thought I would vanish from their lives, on here. I took a little rest, but I could never leave my family in here.
Awesome, awesome, awesome! Great news! I hope your journey in decreasing and ultimately stopping your seizure med is wonderful as well. My husband is hoping to start that journey someday as well.
Hi Crystal - Congrats on the news of no AVM. My AVM is also gone after a very successful surgery of my tongue less than a year ago. Your life changes again forever and only gets better!!
Thanks Debra! And am glad your doing great as well. Your case is rare and am very happy to see that you recovered well and ready to take on life as before. =)
Congrats on your AVM being gone! What wonderful news.
Some of us have severe stories, and some of us do not, but we're all survivors with a story to tell. I find your story quite inspiring.
Patience is something that you definitely learn while recovering from brain surgery, as well as not taking anything for granted, and enjoying life's sweet moments and they come.
Thank you Leslye! Patience is definitely something that i gained dealing with my AVM. I hope you continue to get better and enjoy the sweet moments in life =).
p.s- i was thinking about getting patience tattooed on my ankle as a celebration of my avm being gone. Thanks for your sweet words
Thank you for the kind words and yes it does feel great and I feel blessed. I do have to keep my check ups going because I’ve been feeling a bit bad lately. Maybe its the heat but my seizures haven’t happened for over a year
Congratulations Crystal!!! Thank you for sharing and giving us hope. You are proof there is a light at the end of this long dark tunnel. I wish you a long AVM free life to come!
(aren’t those the best words ever)!! Congrats to you Crystal!