While my AVM is in my foot, my angiogram gave me such peace of mind. No matter the location, AVM’s are scary! Once I had my angiogram, I learned the major arteries feeding my AVM and how much of the location was actually affected along with overall size, flow rate, and complexity. I, unfortunately, have an inoperable AVM and only truly found this out once I had my angiogram. But, I have been utilizing embolizations for about 2 years now and have had incredible success. I wish you much luck and I hope that you get answers! I have had my AVM since the age of 10 and am now 21 now discovering I may actually have a second one hanging out in my cranium, they’re scary but if you have any questions feel free to reach out!
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Bless your heart. If it’s in the foot, how did you find it? I’m a nervous wreck, but it is what it is. I can wish it away all I want but we have to deal with it.
Prayers to you,
Lisa
I agree with you 100%. I’m hoping it will be simple to get in get out without harm or deficits, but life will happen.
Thanks for reaching out. We are very nervous and wishing this was just a nightmare that we will wake from.
I’d never heard of an AVM until this. Now it’s all I think about.
We had 2 neurosurgeons tell us he could play but we benched him cuz it’s too scary.
Thanks for reaching out,
Lisa
I actually found it when my foot started hurting one day, and when weeks rolled by and the sprained ankle didn’t “feel better” my PCP pushed me onto a specalist because I have a rather big “lump” that pops out of the arch of my foot and it is soft and actually squishy. Very weird. It’s all so scary. I was about 11 when I was diagnosed, nowhere near as terrifying as anything cranial, but I remember how nervous my mother was. You’re an amazing mother doing your research. I know a lot of what my parents hated was blaming herself for it for some reason, I don’t know if that’s the case and I don’t want to assume. I just want to pass on the love and let you know that as a patient who doesn’t want a mom to worry, AVM’s are random and we just get unlucky sometimes… nothing you could have done to prevented it. As long as you have a doctor you trust and love, all will be well. I’ve found that that makes all the difference 
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I know it’s nothing that could have been prevented. I really don’t even say why him even though I wish it wasn’t. I know that things happen in life sometimes. I also know that things can always be worse.
I’m just on edge constantly.
I’ve read about leg and foot AVMs. That’s so scary too.
It’s just things that go crazy in our bodies.
No symptoms is a very good thing! Most people don’t find out they have this until after a bleed and stroke. I hope your sons’ AVM doesn’t go very deep in the brain. Makes it easier to remove if it isn’t. I was told 4-5 hours for my surgery, it only took 3. I had my surgery in Chicago, where is your sons being done? I researched the doctor, the hospital, the staff, the procedure itself and that information took a lot of the fear away for me and my mom (me more so than mom). Mom had to help me wash my hair for three weeks since I couldn’t see the surgery site and I couldn’t feel it either so make sure all the soap was rinsed out (I’m allergic to every soap on the market if I don’t get all the residue off).
Waiting was hard for us too when we were waiting for my surgery. I forgot to add: my scalp is still numb from the surgery, about the size of my hand. Was told 50/50 chance of regaining feeling in that part of my scalp. Finally now getting a little feeling along the hairline, about an inches worth. Nerves are very slow to heal so it may be years before all of that numb area has feeling again.
He just had his angiogram. We are waiting to go home.
It’s very small on the outside of his occipital. 2.2 cm. Does not go into other matter. 1 feeder and one drainage out. Dr. said if you had to have one this was the one to have. Amen!
We are in Shreveport and have a neurosurgeon that is the bomb. People travel far and wide to see him. We are lucky. I’m so happy right now but ready for it to be gone.
Thank you so much for telling me your story.
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I am so glad your sons AVM is a simple one. Mine had two feeders and one drain. Turns out when they got in there it was ready to burst on me, quite possibly killing me. My family didn’t tell me for over two weeks after my surgery how close I came to death.
Glad you have a good doctor too! The best ones are in high demand…that’s how you know they’re the really good ones I guess.
When is his surgery scheduled for?
AVM life. It’s like something out of a book that I’ve read but living it.
You were so lucky! Amen to those Dr.’s for removing it instead of another embolisation. It gives me chills.
So, now we meet with his neurosurgeon on Tuesday. He now has all the information needed to move forward. I’m so nervous, but at the same time, ready to let my son move forward in life without an AVM.
Can I ask why you initially wanted embolisation or was that a recommendation by your dr.?
Had embolisation first then 3 days later had surgery . Hence why I was in hosp for 12 days in total