I am new to this site, but thought the whole thing would be great to share my experiences, personal connections, and help those struggling through this disease. Thank you in advance for reading my story.
I was diagnosed in 2013 with an AVM in my right calf. I remember my doctor telling me it is/ possibly was the size of a golf ball. AVM’s are something that have been known in my life as far back as I can remember. My mom had multiple and had always been to Dr. Wayne Yakes in Englewood Colorado to embolize hers. My whole life came into perspective when I was now facing the disease that she ultimately battled her entire life. I went from being a healthy 15 year old girl, and Varsity soccer player to being unable to walk and stand for long amounts of time. Ibuprofen became my best friend. In 2013 I had my first AVM embolization in Colorado. After, that I spent 3 years grieving the loss of my mother and a move to live with my dad who I hadnt seen in 11 years prior. 3 years of trying to explain to people the disease I have, and why I would ever travel such a ways to get treated. February 2016 I got the oppurtunity to go recieve 2 more AVM embolizations back to back. I now await a follow up MRI to see how much my golf ball of an AVM has shrunk. I am hoping that I will never have to step foot in Colorado again. It is a place that gives me severe anxiety. My mother died in colorado and I didnt get the chance to be there or say good bye. I appreciate everything that Dr. Yakes has done for me and my family, but I just hope I never have to come back.
I am a big believer that my disease and struggles do not define me as a person. I am going to be a Journalism/Documentary Science Major come this fall. I am a big fan of soccer, and hockey. I love kayaking and am so happy I can relatively do it for long periods of time now. My life would be incomplete without coffee, my camera, and paint brushes. I am an local award winning artist. I try to live my life to the fullest. Through all my struggles I try to stay close to the things and people that keep me grounded.
Welcome to the site! It’s great to have you with us! I think you’ve got the right attitude to life and I can’t believe you’ve been through so much at such a young age but it is great that you’re a determined person as a result.
I’ve added you to the @Extremity AVM group, where I hope you’ll get support from others and be able to offer support, as well.
Hi it is great to hear your wonderful positive attitude And also a fellow coffee lover Positivity i find is a necessary part of my life too. My AVM has had a big impact on my life especially my career but I just have to go down a different path and not just make the best of it but embrace it !! You sound like you have the right drive and ambition especially an award winning artist at such a young age well done you . You sound like you have took the AVM head on and you are definitely on the winning side !!
Take care
Amanda x
I’m not sure coffee is good for us with an AVM… puts the blood pressure up. But I have occasionally found perfectly good caffeine-free coffee, which I believe is OK.
For cerebral or spinal AVMS it’s important, as a bleed in the brain ior spine s to be avoided at all costs. I’m less sure of the importance in an extremity AVM. Clearly any bleed is to be avoided but perhaps much less dangerous in an arm or leg. Once you’re embolised or otherwise the bleed risk of an AVM has been removed by surgery, we may be back to “normal” insofar as we may be allowed to resume “normal” things.
When I went to Accident and Emergency once, they said: no smoking, no coffee, no chocolate, no serious exertion like lifting heavy weights, etc. or like activities. Salt would probably be on the list, though I forget.
Ask your doctor about stuff if you’re ever concerned. We can only really share our experience on here: actual medical advice is for the doc.
There is truly some decent decaf out there, though there is pretty average decaf, too.
You have a beautiful spirit, I can see it from your story… I am sorry for eveeything you have had to face… I an a strong believer that a disease does not define you… I wish you all of the best…
And also a fellow coffee lover 