Here's a video on my discovery and surgery for my AVM

Here’s a video on me sharing my story on my discovery and surgery for my 3.5cm AVM. Just putting it out there in case anyone is researching or new in their discovery of an AVM whether it’s for you or your family member. I hope this can give people hope and encouragement during treatment or search for treatment. If you can take your time and get opinions from many avenues. This site helped me with my decision to have treatment and how to go about receiving it.

Cheers,

John

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So I guess you didn’t have a lot of feeders?
Can you telle us grade of your AVM
Where you did the treatment
Do yuou take any medicines now?
Any complications?

My avm was/is fed by the ACA, MCA and PCA branches. Which are the 3 main cerebral arteries.

It was a grade 4.

I did gamma knife radiation at Northwestern Memorial in Chicago.

I am not taking any medicine and luckily I did not have any complications. Slight edema from the radiation but that is all.

Hope this helps!

Hi John, YOU are a true blessing. Thanks for sharing and well done. Best wishes, Greg

@John10

So I still need to know if you made it into the Fire Department :crossed_fingers:t3:

Best wishes,

Richard

Thank you so much for sharing your story. Many of us have similar experiences, but hearing it always is so shocking that we’ve all gone through this.

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You too Greg! How are you feeling?

Hey Richard,

I did get in. And I don’t know how but I won the award for physical fitness in the fire academy. I got to pick which ever fire station I wanted to go to in Chicago which is a good thing and a bad thing. I ended up picking one of the busiest houses in the city and it had a big effect on my life. I’m actually going to step away from the career for multiple reasons. 1. After being in the academy and the field, I didn’t realize the huge physical affect the job has on your body and cardiovascular system. With still having my AVM in my head I don’t this career is right for me in the long run. When we go to fires, your adrenaline is pumping as well as your heart rate/BP since its like a fight or flight situation. 2. I am not good at coping and dealing with the trauma seen. With being where I’m stationed, I seen some really traumatic events very fast in my career and have a hard time coping with it. When I was 24 I performed CPR on my 2 month old nephew who passed and I never want to see or be in another situation with a child. Sorry for the big venting. I feel bad that something I worked hard to get isn’t the right thing for me. Doing this job I got really depressed with what I was seeing on a daily basis and I don’t want to desensitize myself. I feel like a failure for stepping away even though I shouldn’t, the same gut feeling I had when I decided to take the MRI to find out I had an AVM is the same feeling I had/have about walking away. Thanks for listening.

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I agree. It’s wild thinking about it. A lot of strong people who endured a lot. I hope you are doing well!

Can I tell you that you’re being wholly sensible.

I’ve worked as a policeman here in the UK and my brother in law is also a (now-retired) policeman. When I did policing, I did it as a volunteer and I enjoyed it thoroughly: I think it is a really eye-opening thing to do. As you can imagine, there is the same hard side to policing as there is to fire fighting and rescue work, though I think the trauma almost inevitably in fire work is probably harder, more constant.

My brother-in-law is one of the most balanced people I know but he has finished as a policeman in the last couple of years and cites how hard it is a job to deal with (and I can attest, as well, as I say). I think it is miraculous that he is as level headed a guy even after policing for such a long time. I think it takes the strongest possible character to do that for a career.

So I look upon firefighting in very much the same vane: it is the toughest thing to deal with. I think you’re absolutely spot on with the physically demanding aspects of it, too. You’ve made a very wise call.

It always feels like a defeat when it is something you’ve wanted to do for such a long time but no, it isn’t a defeat at all: it is simply real life and the wisest choice for how you can contribute to society and earn your way for much longer and in a more sustainable way.

Hats off to the guys & girls who can do emergency work, though. We know how tough it is.

Very best regards,

Richard

Thanks Richard, reading this response was what I needed. And thank you for your brother in law’s and your service. I’ve been down about this for a few months now but I appreciate speaking out and receiving comments like this from you. A crazy thing is when I told me fire house about my AVM, a few weeks later one of my coworkers told me his friend just got diagnosed with an AVM. I gave my buddy my contact to give to his friend but haven’t heard anything from him.

Cheers,

John

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John,

There are a million other ways in which you can contribute to where you live. I think there is the greatest credit for you to take for the time you spent in the service but it is without a doubt not for everyone. So don’t look upon it in any way as a fail, just look upon it as not what you’ve been called to do.

I enjoyed my time as a volunteer policeman – I did it for a number of years – but my conclusion while doing it was that it wasn’t a job I wanted to end up doing in order to pay the mortgage. As a volunteer, it was easy to walk away if that ever became necessary. Maybe frame firefighter in the same way in your mind. It is a life experience but it is for others to do day by day, not you. Learning that as a young man and walking the other way is very wise.

Thank you for your service. Well done.

Richard

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Thank you for this. I’ve been in a very low place with deciding to leave and feel bad to. But it’s not for me. I’m good at it but I don’t enjoy it like I thought I would. I love the guys at my house and they have been so nice to me. They all want me to stay. I’m sure people are going to look at me differently because I’m walking away from a dream career. It is lucky to get in to the Chicago fire department as well as the big cities in the states as it is a lottery system, but I’m even more lucky to find out about my AVM. I will never regret trying it as it saved my life. I just find myself nervous for what the future holds. I really appreciate you taking the time to write to me! I’m glad you walked away as well. There’s so many people who have different interests in life and thats the way I should see it. I helped and served my city with pride. I found out fast it wasn’t exactly my passion and thats ok. Richard thanks so much for the advice!

Cheers,

John

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And you’re being honest with yourself about it, which is brilliant. Too many men aren’t honest with themselves or somehow strong enough to say “No, this isn’t for me,” or only learn this when they pass 40 or 50.

Even if we put the mental health / emotional impact of such a job to one side, what you say about the strain and the adrenaline are excellent points that make it a dangerous job for you to do. Nobody would thank you for going into a fire and becoming a casualty yourself. You can do much more good for the world or for your community in a different job that is going to be sustainable for you.

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Hi John, I’m feeling okay, recovering from breaking my back in a car wreck in August. Doing very light weight and cardio. I developed a love of fitness after my AVM bled and I had 2 craniotomies at 14.
You may have received a blessing in disguise from your AVM (especially since it didn’t bleed.) Even though you’re disappointed, it seems like fire fighting wasn’t the best career choice for you. No shame at all in that (We’ll both make plenty more mistakes.)
So try to look at the positive side-- you didn’t bleed and you have the next 40 years to find the perfect career. Not too shabby my friend.
In New England it’s mostly volunteer fire departments so if it’s a love for you, there’s lots of firefighting you can do. I understand there’s great comraderie. I was on the finance committee in our town and had to deal with the fire dept. a lot when they needed new equipment. For the big ladder trucks and engines we had to write multiple grant proposals.
The reason I’m rambling on is because I know firefighting can get into your blood, but there’s different ways to help out. I’m proud of your decision. Greg

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I’m glad I opened up and responded to you Richard. At first I was afraid cuz I thought you might look at me differently even though we really don’t know each other. I can’t believe how lucky I am with discovering my AVM, having a lucky successful surgery, and then being able to try the fire department. In the most humbling way, I didn’t just squeeze by, I finished with winning an award for the top physically fit candidate. Just thinking that after a few years prior not being able to exercise. I also proudly recorded and made a video of my entire academy class during the process. Here’s the video:

At 11:19 is when I won the competition. I’m finding myself a little too worried about my future but it will unfold.

Thanks for all your solid advice.

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Greg, I’m glad you are on the road to recovery and I’m sorry that happened to you. You are a very strong man. I appreciate your words of encouragement. Going to be in a rut for a while about this but the show goes on. How do you like the east coast living?

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Thank you so much for sharing your story and experience. My son has been diagnosed with AVM left frontal lobe. Had a seizure while skateboarding, did MRI and that’s how we found out about the AVM. That was in 2013. He went through depression, anxiety because of this diagnosis. He has chosen to leave it alone, no surgeries. Since 2013 he has had probably 5-6 seizures (he takes Keppra) No further bleeds…thank God, but it’s really affected how he lives his life. It really affects the whole family and it sucks. I’m so glad you are doing well!

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Hi Melinda,

I’m sorry to hear this. It was really hard for me to decide if I wanted to treat my AVM. I went through the same feeling. It’s really scary to think about especially when you first find out. It’s scary to even do surgery for it. I’m still concerned with the possible long term effects of my surgery as well. I hope your son and your family finds clarity in this situation.

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Thank you John. Sorry for getting back to you with a rely so late