I am in Canada and my son had a brain bleed, and was diagnosed with AVM, but I am confused!

Support
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I understood that an AVM was an entanglement of veins and arteries that can occur anywhere in the body, an arm, a leg, the brain, or the liver, etc.

Perhaps I should do a lot more research? My son has done some research on his own, but is dealing with other issues, like alcohol, weed, and depression, not to mention a lack of motivation and low self esteem. I believe I have tried to hard to help him and am getting nowhere. I have become a "safe place" for him to be taken care of, largely because I feel sorry for him having the AVM. I feel like I am the only one with so many issues with my 26 year old son. Can anyone else comment on whether the AVM perhaps contributes to these other issues in any way? I am in Ontario Canada........I see a lot of references to American doctors and cities.......HELP!

Jo

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Hi Queeny,

I think the correct answer is "YES", many of the things you mentioned (AVM, Alcohol, Weed, Depression, etc) can contribute to his feeling poorly. If I'm not mistaken, alcohol can thin the blood, which is not a good thing if you have an AVM, so I would suggest moderation. My wife was told after her AVM showed up to eat good food and regularly (don't skip meals), get plenty of rest, and really minimize any alcohol consumption.

I understand completely your concern for your Son, and wanting to assist him and provide a safe place. Our son had epilepsy from middle school into college when he had surgery to stop his seizures. We tried from an early age to allow him to "own" his medical condition. We provided a LOT of guidance, but whenever we could, we allowed him to make his own decisions. For example, he really wanted to play high school football (and he did well), but we were scared to death that a concussion could cause him extra harm. So we reached a compromise: he could play with our blessing UNTIL he had a concussion. One concussion, no debate, he would quit football. As it turned out, not an issue. And when he was 18 and was thinking of doing surgery to try to stop the seizures, we helped him gather info, but in the end, the decision of go/no go was his.

I would also suggest for each/all of you to go to a competent counselor. Finding out you have an AVM at a young age is very scary for everyone. It helped us greatly to talk with a counselor together, then each of us, including our two young kids, to help each of us deal with all that was going on.

Best wishes in your journies.

Ron, KS

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HI Jo,

Our 16 year old daughter was diagnosed with an AVM on November 20 2013 after her sister found her in full seizure mode early in the morning. She had had an earlier seizure about 18 months prior when were in Minnesota on a hockey trip and our family doctor convinced me that it was "Night Terrors, and that all children have them and grow out of them". Turns out she was having them frequently/nightly?,as we look back,and she became disinterested in her love of hockey and lost her passion for it, developing severe depression, anxiety and withdrew from everything and everyone. She had always had "migraines" and we often ended up at LGH emergency in the middle of the night for treatment but she was never free from them, now we know why. During this time she was put on an antidepressant to help with her mental state and suffered through some very challenging times including Mono.I firmly beleive that all her problems were directly related to the AVM and how it had changed her, mostly because of the night seizures. We have had sucessful surgery on December 9 2013 and to date she is making an amazing recovery, on fact she starts her speech therapy today to enable her to go back to school after Christmas Break.
I would pursue that line of thought with your doctor and not let up until they acknowledge it, too many coincidences for it not to be based in truth. Listen to the little voice inside and dont let it be silenced until its heard.
You haven't mentioned if your son has had treatment or not so I am assuming that he has not.

SAndy

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HI there--

I am so sorry you are having to deal with other issues besides the AVM-the AVM is enough for any person to deal with at one time!

The AVM itself can even change a person's behavior--sometimes the surgery done on an AVM can alter one's personality. That is something that he/both of you will have to decide as you move forward.

I would definitely suggest you see an expert in health counseling--a licensed counselor that deals with brain diseases--as it relates to changes in behavior, decision-making and so on. I have had mood swings since I was young, and at the time, we did not know what the underlying issues were. My mother called them my "black" moods--I have had migraines since I was 3 years old, along with all of the debilitating symptoms--my AVM is located in my left cerebellum--it was not diagnosed until 8 years ago, and I am 49 now--A LOT OF CHRONIC PAIN!!

I pray for your strength to make the best decision for your son and what he is dealing with now and in the future--I feel the marijuana is a huge detriment, and so is excessive alcohol--I would say that to anyone who asked. I do drink wine at times, but I do not go beyond what I know I can handle. My situation is bad but it could be much, much worse!

A little history: My Mom was prescribed barbiturates to lose weight while she was pregnant with me. Both of us almost did not make it. I have had migraines since I was 3, diagnosed with the cerebral AVM when I was 41, chronic migraines 6 days/week, sleep apnea, and other issues related to the AVM.

I mention the above because I highly recommend that you educate yourselves as much as you possibly can--there is so much information out there, and of course, that was not always the case! May times even experts back in the day had great ignorance!

I really hope this helps--just take it day by day and make the best decision that you can based on all of the information you can find. There is so much help on here, and it is very comforting to talk with others that deal with the same things as we all do. Please stay strong and take care--

Also, I have decided not to have any type of surgery, and I just live as best as I can. I do not let this disease dominate my life or define me. I count every good day as a blessing and to use it to the fullest that I can. Look forward to seeing you on here again--

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hi i had a bleed from my avm in 1979@age 18 whicch couldnt be treated due to its position. it was right temp lobe. after eight weeks in hospital i went home and lived with it for the next 20 years. i had complex partials and meds but i lived my life. had 2 lovely boys and finally had gamma knife in 1999 & 2002. my avm is obliterated
now but you can llive a normal with an avm if you are positive about it and dont let it get u down. back in the day there was no info or support for patients atleast not in my part of the uk.