Hi my name is Brody I’m 15 and I’ve done heavy weight lifting for a while I was born with AVMs and I don’t have any problems with it all i have to do is go every 2 years to get my vains in my brain looked at. But recently I’ve been really scared about life I want to live to be old but I hope I can get a surgery
Hi! It’s great to have you join our community!
It would be interesting to understand what you know about your AVM and how it was discovered. It sounds like your doctor is just monitoring you rather than recommending any intervention. I’m a bit uncomfortable about the heavy weightlifting but football sounds fine.
By the way, I moved you to your own topic, so people see it.
Welcome Brody! Where is your AVM? Mine is in my left temporal. I played a little football but mostly hockey, and used to lift a lot of weights as well but take it easier now on the heavy stuff. Its sure worthwhile to stay dialed in with your doctor, specially doing those type of activities. Take Care, John.
Welcome to the group. My AVM was caused by a rare stroke at the age of 43. I used to lift weights and hope to continue soon. How were your avms discovered? Are they suggesting surgery?
My avm is on the parietal lobe I found out when I was seven riding a bike and I hit my head on the ground and I had nonstop headaches. So after that my mom told me to children’s hospital and they a look at my brain and said I had an AVM. But the main reason I joined here is to get answers because my doctor has never talked about any surgeries with me he basically just had me come in and get checked every so often so I don’t know if it’s something that’s going to be trouble in the future Or not. I honestly just found out just like four days ago how dangerous it really is. I’ve done a lot of research and I’d have no symptoms of anything all I know is I have it. I asked my mother about it and she said that I have thin blood and that they Avm not give me any problems he says it’s just too early to know I personally can’t tell you much I don’t know all the medical stuff about AVMs. It’s just been really stressing me out lately and I don’t really have anyone to talk to about it besides my doctor so that’s why I joined this thank you and sorry for the sloppy text I’m in a hurry.
Well, welcome! We can’t give you medical advice on here because everyone is different and what might be the case for me may not be the case for you. However, we can talk about our own experiences and give suggestions as to what you might do.
An AVM is potentially dangerous, as it sounds like you’ve read somewhere, so it is worth knowing about it and deciding what to do. Having said that, they reckon that one person in 1000 or 2000 has an AVM but most of those go undetected, as most people don’t have a brain scan done and most people with an undiscovered AVM go through their full life without it giving any issues. So, on that basis, just having a look from time to time is fine, especially if it is not giving you any issues.
Depending on where it is, how big it is, etc., would greatly determine whether intervention is important, what sort of intervention would be best, and in some cases whether intervention is recommended or not. If your AVM is in one of the deeper parts of your brain, it could be as risky / damaging to get to it and treat it, as to leave it alone.
So, my view would be not to worry about it. Monitoring it is undoubtedly the right thing to do to start with. However, if you get headaches, dizziness or any signs of seizure or stroke, treat it seriously and may be connected to your AVM. Any sign of seizure or stroke would warrant dialling 911.
Definitely talk to your parents and/or doctor about how dangerous your AVM is or isn’t and whether treatment will become important, or not. I assume that you are getting the views of a trained neurosurgeon, or neurologist on your condition, not just your primary care doctor. I’d say you want a specialist’s view, not that of a general practitioner. It is important to deal with it appropriately but there is no benefit to be gained from worrying.
I would talk to the doctor about the weightlifting. The main thing you want to avoid with a brain AVM is to not put your blood pressure up. That your AVM is not giving you symptoms is really encouraging but it is definitely worth having a conversation about the weightlifting with a specialist. If pushing big weights is making you strain hard, put your blood pressure up, it is a risk you might want to avoid. I may be expressing my opinion here but I think worth asking the question.
Hope that helps.
Very best wishes for the new year!
I also joined here because I didn’t really have anyone to talk about this with. I had my avm removed via surgery when I was 20. Now I’m 33, and the whole thing didn’t really affect my life. Everything’s cool
You’ll be all good.
Hi Brody, if you look up ARUBA AVM STUDY you will see that not all AVM’s fare better with surgery. Find a surgeon who has done many avm surgeries and don’t just go to your town doctor. Teaching hospitals are usually the best. Medicine changes and there are a lot of people inventing new technology. I hope that having this condition doesn’t worry you often. Instead, I hope it makes you realize more than others how sweet life is! I don’t think it is recommended to lift weights when you have an avm but do stay very healthy. Focus on all the good things in life. Strive to be happy. My son was diagnosed with an avm when he was in his 30’s. It has never bled but he seems to look at everything in life in a very negative way. I can tell you that his bad attitude has not helped him at all. He has missed out on so much by choosing anger over forgiveness.
Hi Brody! During my AVM journey I would say that AVMs are still a mistery to the medicine and how they behave or will behave in the future is a question that all the doctors would like to answer. One time my neuro told me the AVMs assumptions known today are based on statistics…And you can see all of us here in this forum with so many different stories. If I were you I would look for a second opinion, and after that if monitoring is the decision I would´t worry again with it…avoiding of course certain things like heavy lifting (my AVM just exploded at the gym while doing it) Neuro also told me not to take birth control pills, drugs (of course) drinking more than a drink per day, and not doing things where the head is down for a long time…all the rest…normal life
HI Brody. I have a brain AVM in my Cerebellum and am 44. I was discovered when it caused something else when I was 14. But apart from this it has never given me any problems and is stable. I just get monitored regularly (MRI every couple of years) like you. AVMs are not easily treatable and sometimes removing them can cause lots of other issues. So I would advise not to rush into surgery. It is the human nature to want to treat at all costs. But sometimes there are alternatives. Best of luck. Lulu