Living with Arteriovenous Malformation AVM. How to live with Arteriovenous Malformation AVM?

My best advise is to never give up and keep looking for other treatment options. I try to live with the mindset that "it could always be so much worse"

It’s a terrible way to live. Pain everyday. I have suffered from depression because of my AVM and not being able to do the things that make me happy.

You can ABSOLUTELY be happy living with AVM! The main thing I suggest is to:
1. Remain positive
2. Look at the bright side (no matter how bad off you are, someone is always worse off.
3. HELP OTHERS- you’ll be surprised how good it can make you feel to assist others. Everyone is fighting their own battle but we CAN and SHOULD help each other out. Join support groups. Share your story. Reach out to others.
4. Listen to your body- relax when you’re tired. Get out when you feel up to it. Do as much as you can.
5. Try alternative treatments rather than a bunch of medicines. Be open to things like acupuncture, massage, body work, reiki, PRAYER. (Note: this doesn’t mean not to take your prescribed meds... WHEN IN DOUBT, talk to your DOCTORS)
6. Do your own research. Take an active role in your treatment. Know what your options are and research the various options before making decisions. Talk with your family and let them have a say in what you choose, when possible. Own your disease. Come prepared to every doctor’s appointment with QUESTIONS. Ask them all. (Note: I use my smart phone to jot down questions for each specialist. I use NOTES. I insert photos and links to websites that talk about my questions/issues. I don’t leave until my doctor has addressed them all.
7. ** Most important **
BE PATIENT WITH YOURSELF
LISTEN TO YOUR BODY
REALIZE THIS IS A MARATHON, Not a Sprint

Good luck on your personal journey. Today you may be a newly diagnosed AVM sufferer, but someday you’ll be a SURVIVOR.

Moderation, you should advise the driving authorities of this condition, and should you have surgery definitely advise the driving authorities. Using enough support when sleeping to keep your head raised at a level higher than your body to ensure the brain blood vessels can drain effectively rather than blood to pool and accumulate, You have a raised risk of TIA and stroke, discuss with your GP whether you should take anything like a low dosage of Aspirin to reduce risks of blood clots. You would be wise to wear a medical alert disc and maintain the data on this, try to avoid stressful situations, but also try and live too.

As normally as possible but in this case as AVM was pressing on the optical cortex this posed orher problems and not least fatigue