Dear friends,
My son had a 6 hour surgery in 2004, he is 23 now. He still suffers from depressions and anxiety. Sometimes he can cry for no reason, sometimes can be angry and cannot control it...and so on. He tries to live normal life, just never removes his hat in public...
I would like to know how other survivors deal with these side effects.
Hi Dad,
My wife Janet had her AVM embolized just 3 months ago. Her symptoms or side effects seem to be very much like your son's. It's a challenge for me as her husband. It's also a challenge for her coworkers. And our children certainly have had to deal with it also.
Janet isn't dealing with it at all. She just basically is a wreck from time to time. Fortunately, she is not like this ALL of the time. But, she is angry and depressed far more often than I would have suspected a survivor would have been.
What I am saying is that you and your son are not alone. Honestly, the only answer I have for you is to keep a lot of love in your heart for your son. When things get bad at my house, I simply try to remember that I love this person and that can't be turned off. So, I just suck it up and let it go.
Man, I wish I had different advice for you. I hope you have enouogh love in you to deal with this and to help your son deal with it.
Hi, well I don’t think there’s any “one answer” to your question. Everyone is different… There are so many variables depending on where your son’s AVM was located in his brain, how many embolizations he endured prior to surgery, if he had a bleed prior to his surgery, how skilled his surgeon was, etc… I had 3 embolizations prior to my craniotomy and it’s been almost 12 years for me… I have several side effects: short term memory issues, high level executive function of my brain (multi-tasking, visualization, etc…), depression… however, for me, I continue to notice improvement… even now! I deal with my anger and depression by taking medication… I think exercise helps too, but I’m not real good at doing that 
It's been just over a year for me since my embolizations (2) and surgery. While I don't have the depression I do feel anxious at times for no reason and occasionally I get angry again for no reasonable reason.
i'm 9 years post surgery and I take medication for depression. I've tried to wean off at different times but without it i'm a mess - crying, not wanting to do anything, etc. my neuro says that I may need it for the rest of my life due to chemical changes, etc. it took 2 years to find the "right" medication for me. i'm happy and have
adjusted to my new life.
Hi Dad
I want to let you know I had an AVM bleed and craniotomy in 1959 when I was 9. I was a really happy kid, but after all the surgery was over and I went home with Dilantin for seizures, I do not remember much happiness. I now know how lucky I was to come out of all that alive, despite the time period when it happened. My physical outcomes are severe vision loss in both eyes to the left from center. It is like the world consists of what I see on the right. There was no rehab I went to. I also am a very intelligent person, and was able to become a Paralegal at a state Department of Justice. My difficulties are slow to learn something, not understanding the first or second time I am told what to do. I barely graduated high school and really hated school. I had a wonderful supervisor. She knew I was smart, but there was something different about me. You see, I never told many about my vision or anything else. I hid it. She figured it out, and finally asked me why my left eye “wandered”. I told her all of it, she changed the way she was teaching me about the fraud unit, and she said in an evaluation that once I nailed something new, She knew I could do this job. I thank her for everything she did for me.
I am 64 now, have a great and successful son. His dad (my husband) died when he was 47. I had always been moody, not good in social situations, felt I never fit anywhere. I thought I was dumb, would never get married, never have a baby, and always wondered why I was so different I called myself an alien. I was emotionally labile (emotions all over the place), never smiled much, had a hard time reading people, am impulsive, disorganized, quick to anger, and a procrastinator, etc. When I finally realized some or most of these symptoms were a direct result of exploratory brain surgery in 1959, the relief I felt was indescribable. It was not me, my fault, my dumbness, my sadness, my doing. It was part of my life, and I got through it on my own mostly, without any answers until I started researching. I wish my husband had still been alive so I could have told him, but he was not.
Your son needs to know everything about his AVM. He needs to know he is the way he is because of AVM and results. He needs to know we all have some of the baggage left after going through AVM treatment. It depends on where in the brain the AVM was or is located, any other head injuries he may have had and not realized he hurt his brain at the time.
I believe the truth sets you free, not from the undeniable results of AVM, but from the knowledge that we are survivors of a bad deal we had nothing to do with in the first place. He needs to see a counselor experienced with head injury and mental health results. Don’t waste time starting with any doctor or counselor who does not know what an AVM is.
I am living proof it can get better, with help and time.
beans
Hello Dan’s Dad, I had my 2 embolizacion and craniotomy 8 years ago . My Dr . mention Post Traumatic Stress Disorder after surgery . The emotional impact of our condition is huge. Counseling and medication had been my salvation. My mental health is in a good shape now . It took time but now I can say , I never will be fully recover, but I acept my new self , with the scars and limitations. Good look to Dan . He is so lucky to have a Dad like you .
Im dealing the same thing myself. my family knows how hard this is but they tell I DONT KNOW WHY YOU GET SO ANGERY ALL THE TIME!!! no help someone help me! thanks
please help me Im going same hell plus my family is no help!
See a neuropsychiatrist, usually at a major university hospital. He might need a mood stabilizer and a different anticonvulsant. I started having “thought” seizures at first, anger, disjointed. They can manifest in many different ways.
Paris , it takes time , stay strong . You are a new upgrade version of Paris. My kids (10 and 12) said that I’m very cool because I have titanium pins in my head . Family members sometimes think that just because we “LOOK” healthy and sharp , we are perfectly fine , well , we are not , and our condition don’t ends after the hospital discharge us .
How come nobody answers me???????
Dear Survivors, I just joined this network today and did not expect to get so many comments. I am reading every word and cannot control my tears…thank you all so much. Dan does not know that his “old man” poster a blog. Hopefully he will join it and will share his feelings and experience.
I just wanted to pop in again today and say that I really “feel” for everyone on this AVM Survivors Website. I have posted on here before about this… about our disability being an “invisible disability”, and how it’s sometimes hard to deal with, etc… I’ve really been suffering (emotionally) with dealing with my husband’s family again… they are self-centered, clueless people that THINK/BELIEVE that they’re all very “self-aware and centered”… They all think that “I’m the one that is messed up” and that they’re all “fine”… They think I use my disability as a crutch and that I’m basically a “cry baby”… etc… Things have gotten so bad, I started seeing a psychologist a few months ago and it IS beginning to help me, somewhat… It’s just very depressing and I sometimes really feel “hate and anger” toward the ignorance my husband’s family exihibits toward me… I have many friends, many people that DO “get me”… but, it’s the ignorant, arrogant attitudes/ people that really take hold of me/ bother me… I wish there were a magic pill that I could take that would just make me “immune” to their attitudes and comments… Since there isn’t, I guess all I can do is try to keep my distance from them as much as possible. There IS a wedding that I have to attend in about 6 weeks that is causing me to have more interaction with my husband’s side of the family than normal lately… I’m just hoping and praying that I can get through this time period unscathed… It’s just a very stressful time and I wish I could fast forward 6 weeks in time and have all of this “over with”… Ugh… Thanks for listening ;o)
Paris, I know how you feel when nobody answers me. It used to happen when I first joined this site, and that may have been in 2008. It is frustrating to be ignored, and I once quit the website for that reason. A few months later, I had to come back because it was and is the only place I feel I belong.
Sometimes starting a dissuasion can get you answers, sometimes none. When there's an immediate need for support from us, unless you send a message to a friend here, that is the way I have asked.
I wrote a response to Dad below from beans (me) but it was not meant for just Dad. It was meant for anyone who can read it and see what I said, and know I may be the one person here who has over 55 years between now and when the AVM bled in 1959. I have too much experience with the aftereffects and if they go away or improve or stay. I can only speak for myself, of course, because of the nature and locality of the AVM in the brain.
beans
Dear Michele!
Once I return to Chicago (I checked your profile) we will meet and talk. For now just ignore this family, if they do not understand what you are going through, do not stress yourself even more because of them.
Beansy, Thanks for your help, you inspire all these young people! You are a hero, living 55 years under constant stress. Nobody understands Survivors long terms issues better than you.
Hello Dan’s Dad, I had my AVM removed in 1992, I was ten years old at the time. I’ve suffered from depression and social anxiety for most of my life. One thing that I must say is that your son is very fortunate to have an understanding father such as yourself. After the surgery and for many years following, I went through intense physio-therapy and occupational therapy because I’d suffered a stroke before the doctors knew that the AVM was there. However, the psychological repercussions were never dealt with proper. Or even recognized for that matter. So it’s a very good thing that you’re that you’ve joined this forum and are reaching out. It was not until I was nearly twenty-seven that I realized that I suffered these psychological traumas as a result of my AVM and stroke. I live in a fairly small isolated town and didn’t have access to a neuropsychologist (or even a psychiatrist for that matter) so I had to go the route of plain old counselling. I found this to be frustrating, as they weren’t well enough prepared for the issues that we all share here. However, what they did do for me was to connect me with the proper medical professionals who in turn gave me a diagnosis and dealt with my issues accordingly. I am now thirty-two living as normal a life as I can and my depression, social anxiety, and self-esteem issues have lowered considerably. I even find myself to be proud of the big scar that goes across my head. Seeing it as somewhat of a badge of courage and a reminder to myself of all that I’ve overcome. So hang in there and use all the resources that readily available nowadays. We live in an age wherein depression is no longer swept under the carpet or looked upon as a form of shame or weakness. It may take a little while to find your son the proper help, but you’ll find that people out there are more than willing to assist you in finding the right people if they themselves cannot be of direct assistance to the issue. All the best to yourself and your Son.
Warmest regards,
Ryan Prokopick.
Michelle, I have to tell you I have the same with my family and it gets me so mad I need to take brakes from there ignorance the difference between you and is I have no friends and you have friends who understand you treasure them about a month ago I got and had trouble breathing my mom takes her phone off the hook so I don't disturb her beauty sleep so I was very scared I had no body to talk to so I called 911 and 10 paramedics came to my home they looked at me like I had two heads! so count your blessing that you have your friends I have no one but my cat Nora!
Hi
I’ve always had social anxiety and problems of impulse and trouble cog trolling emotions especially anger. I had wembolisations and craniotomy in 2001. I’ve had depression since then. My surgery was all planned as avm was found before any bleed. I still have the depression which is like mood swings from normal to very low. I’m quite well controlled on meds but I really know the depression is there if I forget a dose or take it late. I’m trying to deal with the anxiety. I’m glad you started this discussion as I feel alone with my depression. It doesn’t fit with usual depression because mostly my mood is normal, I eat, go out and volunteer (wish I could socialise but maybe that will come). I too found neurophyschiatry really helpful and comforting because they reassured me it was depression.
Sorry my typing isn’t great so there are spelling mistakes and I can’t face correcting them all. I think I got the main ones. I going to see if any of the other threads have ideas of things that gelp. For me exercise is good.