My Boyfriends AVM story

A few months into my second semester of college, my boyfriend found out that he had an AVM in his frontal lobe. We had no idea what an AVM was at the time, not many people do. He has had headaches his whole life but recently they had changed and his doctor recommended a CT scan. That is how they found it. We met with a neurosurgeon a few weeks later after he had an MRI. Those few weeks waiting to find out what was going to happen and what his prognosis was going to be was torture. His neurosurgeon, Dr. Carlos David from Lahey Clinic Burlington is amazing, I recommend him to anyone who is looking for a great surgeon. His doctor told us the three options to treat his AVM, the first one was to remove it surgically, the second to receive radiation, and the third was to leave it alone. Before he could decide he had to undergo an angiogram to see what option was best for him. The angiogram went well but the recovery was terrible for him. What was supposed to be a day procedure ending up being an overnight stay at the hospital because he was throwing up all day from the medications. He bounced back a few days later and was back to his normal self. A week later we met with his surgeon again to discuss his results, during the angiogram they found out that his AVM had two aneurisms on it, because of that the doctor recommended the surgery to remove it. This all happened in mid February and because we are both in college he wanted to wait until we finished school for the semester to go ahead with the surgery. Those few months of waiting for the surgery to happen were awful. Once I found out that it was like a ticking time bomb in his brain it was hard to think about anything else. I found this website during those few months and read a lot of your stories on here and that is what gave me the most comfort during those hard couple of months. This website gave my hope that everything was going to be okay and he was going to come back from this. So on May 21 he was admitted into the hospital to get the embolization, in which they shot glue up into his brain to hold the AVM in place. This makes surgery easier. It went very well but it was very nerve racking. The next morning he was taken up to the OR for surgery, the hardest part was saying good bye to him because I had that fear that I was never going to see him again. It was a long 5 hour surgery but everything went perfectly fine. I was so relieved to hear that everything went so well. Immediately after the surgery they did another angiogram to make sure he was cured and he was. I was able to see him soon after. I was on cloud nine knowing that we never have to worry about this again. The next week in the hospital was very tiring, I was there every day with him and he was feeling as good as to be expected but I was really bothered by something. He was a completely different person. He was mean, depressed, angry, and sad. I had never seen this side of him before and I was so scared this was who he had become because of this. I just was not prepared for this and it really through me off guard. His doctors reassured me that this is normal and he will come back but I was not convinced. It has been four weeks since the surgery and he is almost 100% back to himself. These past 4 weeks have been an emotional roller coaster because he knew that he was not himself and he felt like something was different but he couldn’t help the way he was acting. He was hitting, biting, saying horrible things to me and I know that he didn't know what he was doing but it was so hard to deal with. I am so relieved that he is almost 100% himself again because I did not know how much longer I could deal with it. I cried so many nights thinking that I had lost the love of my life but I never lost hope in him coming back and thankfully he has. I hope my story has helped some of you guys out there in my situation because all of you have really helped me. Always have hope and never give up! We are so very thankful for all of his wonderful doctors and nurses that gave us our lives back.

I am so happy everything turned out well for you! I can only imagine what it would be like to be the loved one watching! I have not had a crani, but the brain takes time to heal! Be patiemt, he will get even better than he is now. The meds will do crezy things,especially steroids and seizure meds! I am sure he will be touched by your support. Thank you for sharing your story! I wish you the best with the best of the recovery!

Thank you very much Melissa!

Thank you so much for sharing your story and your boyfriend truly has an Angel in his life with YOU and am so glad to hear that he is almost 100% himself - with time, he will be so grateful to YOU for sticking by his side and Loving him "unconditionally"!!!

I am so happy things are going good now. He is very blessed to have you in his life. Good luck to both of you. Thanks for sharing. I love reading success stories.

You are very strong to go through all of this. I'm sure you were very worried, not knowing different medications can affect people differently. I have been AVM free for over three years, things get better everyday. I was also told that I was acting hateful,and nobody wanted to be around me. My husband said I was being mean to him. I said surely you realize it was the medications, I guess he didn't. Good luck to you and thank you for sharing your story.