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AVM Survivors Network

Long term side effect: I cry easily


#1

My AVM burst on my cerebellum 7 years ago now. One thing that has remained with me all this time is that I cry easily. My doctors were at times surprised at side effects I experienced in the aftermath. I know if I asked about it (I have not seen my doctors in years now), they would not have a ready explanation.
So, I’m a guy, and this problem is embarrassing. I changed jobs recently, and during the exit interview with the HR person, I starting crying. Not sobbing, just tearing up with the voice quavering. I’m embarrassed to watch a movie with my wife and experience a sad scene. I avert my eyes and try to think about something else. We saw a movie recently that has a very powerful scene. I waited until I was home alone, and watched that scene again to really experience it. I can make myself cry just by thinking about something sad or emotionally powerful in some way. Songs can do it for me, and even talking about the song can do it for me. What can you do?–It’s the brain, and the blood going a millimeter here or there can have different impacts. So, it’s my side effect, and another person may have a different one. Still, it can be difficult. I was describing a plot line in a TV series to my wife once, and I started crying. She looked away, I’m sure she was trying to give me space and not make me feel uncomfortable, but at the moment it had the opposite effect. I wish I didn’t have this, but it’s a trifle compared to what others have to deal with. I am still here!


#2

Fascinated because my daughter’s AVM was also in the cerebellum and she has not cried in 16 months since the bleed. She’s 11 so that really not normal.


#3

Well, she is still young, and her ability to recover fully is much greater than an adult. What do her neurologists say about this? Also, this experience is very profound, and perhaps she is emotionally stunned by what has happened to her. Perhaps her reaction is to withdraw from others and have a blunted emotional aspect. These are just guesses. Sometimes kids are not fully aware of what they feel, and she may not be able to articulate how isolated the experience has made her. I felt very isolated when I was recovering. No one else, that I knew of, had anything like this happen. I had never heard of such a thing until it happened to me. I felt like no one else could understand what I was going through. Perhaps a therapist or psychiatrist, who is fully aware of what happened to her, would help? I don’t mean to presume–I want to make suggestions that might help.
Once, youtube had a video of a woman in India who had this same sort of event, an AVM on the cerebellum. Like me, she had a craniotomy to get rid of it. After the surgery, the video showed her walking unsteadily, white belt around her so the assistant could hang onto her and not let her fall. This was very familiar to me. I looked into her eyes, with the understanding of what she was going to go through…based on what I wrote previously, you can understand why I was glad that I was alone when I saw this. It made me cry. I often think about this person in India who I don’t know, and hope it went well for her. I dearly hope your daughter’s recover takes a better turn.


#4

Thanks for your wise and kind words. I think I’ve cried enough tears since last January for my daughter and me. I haven’t asked any health professionals about the no crying recently and I can’t remember what they said really. I do remember a conversation I had with her neurosurgeon in August where I told him that she had been quite heartless at the rehab hospital in terms of tolerating other children who looked different (there were several kids with CP) or who made lots of noise or cried loudly. He explained that this was due to the extreme trauma she’d experienced, that it would leave her incapable of empathy or sympathy for others experiencing difficulty. That helped me a lot because I thought she’d become a bit of a monster. She definitely bottles her emotions and then sometimes explodes. The rages can last seconds or hours. Last night she had a bad one. She locked herself in the bathroom and banged around and sort of grunt screamed for at least 40 minutes. It then continued off and on as her dad and I tried to get her to talk. Even before the injury she would clam up when upset so now it’s just much worse. I know what prompted the upset was her realization that it was Sunday evening so school in the morning. She hates school so much now. Too many annoyances and a system that really has no idea how to help her despite my relentless communication and education since September. I definitely think you’re right that the injury blunted her emotionally. She sees a counsellor at school and she’s finally agreed to see someone outside of school too. The worst is that she needs another craniotomy in a month. She doesn’t know yet but we’ll tell her soon. I’m pretty worried about how she’ll take this. We were told last spring that the AVM was gone but latest scans show a tiny residual that must be taken care of. There’s a great risk of it growing over time especially because she’s still young. Thanks again for your help.


#5

Could she be tormented at school? There is something there she finds very unpleasant. She may not want to tell you about it because she is ashamed and embarrassed. That could certainly make a child withdrawn and defensive. It is just a thought…Anyway, best wishes and prayers for your daughter.


#6

That’s a good thought and logical, but no, her classmates are actually really great with everything. I think her problems stem from the fact that as she continues to improve especially physically, she really resents how she is forced to function at school. Always with a EA by her side, still must use a walker although she never does at home anymore, has to use a separate bathroom where another student is diapered so it frequently stinks. She also really struggles with noise–kids talking, laughing, tapping or clicking pens, making weird video game noises or muttering rap lyrics under their breath. It’s extremely difficult for her to focus on her work with the constant distractions.

We’ve tried various things to help her but so far none is particularly effective. She needs to advocate for herself more in the moment instead of bottling her anger and unleashing at home. No fun or productive.

Allison


#7

Hiya Alison,
Just reading your post about how sound annoys your daughter now, have you thought about getting her some ear defenders, they look like earphones and distort the noise. I work with children with autism who also cry to loud noises these really help them become less destressed.
All the best xx


#8

Amanda13 - great suggestion regarding the noise issue!

Hi Alison,

Also, of course I don’t know your daughter but I also dealt with anger and outbursts. I was very unpleasant to nurses and another girl with an AVM (like wanting nothing to do with her). My parents were told that it is actually a sign of depression as a response to trying to cope with the trauma. I did not understand that at the time but looking back I get it. The child psychologist asked me to start journaling about how I felt. I was like “umm not interested” insert teenage eye roll. The first pages where kind of me being stubborn, but ultimately, it really helped me to work out some things internally and made it easier to then start verbalizing.


#9

Respect. I am a woman and always grew up knowing crying was unacceptable, you keep your chin up and move on. What have I been doing the last year? Crying and crying like a little baby especially since my brother died, it’s like every chance I have alone I just cry. It’s embarrassing, it’s frustrating…


#10

Double Respect. After my AVM diagnosis, I was terrified by how easily I cried. If you looked at me sideways, I cried. If you spoke too loudly, I cried. If I felt I was being criticized, I boo-hoo’d like a baby! I was a tough cookie before the AVM. It’s been over 3 years since my diagnosis and I don’t cry as easily any more, but I cry way more than I used too. Ain’t no shame in crying. If you feel like crying, cry. If you feel like dancing. Dance. But by all means, keep living!


#11

Thanks, Amanda. This has been offered but she’s not interested. A rather pushy assistant at the school at the rehab hospital put them on her and it was a very bad experience. My daughter couldn’t yet speak at the time and did not want the headphones on. It’s actually the event that mad her so mad, it helped her to speak again because she wanted to tell me about it. We’ve tried a few ear plugs (less conspicuous) but she has crazy small ears so they tend to not fit right. I wish she’d be more amenable in this area but no luck so far.


#12

Hi Jaz,
How old were you at the time? How old are you now? My daughter harbours a ton of resentment and anger and another disabled boy at school particularly makes her irate. I guess he blocks doorways with his walker, leaves crap in and on the desk like opened drinks etc. I try to talk her through it but it’s so weird how she now sees herself as like him when their issues are very different. He has bad spina bifida so has dealt with his disabilities since birth. He also will not improve like she steadily has been doing. It’s hard not to be disappointed in her lack of empathy, but our surgeon said the same thing as you mentioned, it’s a reaction to the trauma. I love the journaling idea. We sometimes make lists of everything that makes her angry at school and then we decide which ones we can take action with and which ones she’ll have to learn to tolerate. I’m going to encourage her to write more on her own in a book I bought her. It’s a work in progress for sure.


#13

Allie, I realize your daughter doesn’t have autism but much of what you describe fits on the general specturm of austim, the reactions and overwhelmed feelings, the outbursts when pushed and so on. Maybe it’s worth speaking to an austim therapist for managment ideas? As you’ve had the unfortunate experience of leaerning, extreme trauma can cause extreme reactions.

I was an overnight camp counselor for years, both for “regular” kids and kids at risk as well as kids with terminal illness. We played a game at dinner every night called High-Low. Very simply each person picks out their “high” for the day and their “low” for the day and it becomes a topic of conversation. I remembered this after reading how you sometimes do lists. High-Low might be more helpful and more immediate as it’s not a long list and it’s limited to a single day’s events.

Good luck to you and yours!

azurelle


#14

Hi Allie,

I was 15 at the time, and I am 29 now. Yes, resentment and anger. I’m familiar with both. My mom said the same thing about the other girl with AVM. She thought that I imagined her (slightly older and a more extreme case) as being what would happen to me. I do not remember ever consciously thinking this either, but hey, seems she was right. This person and I later became friends, but I would not even look at her. She was very patient with me. I don’t know how I would have responded if she had of been a more abrasive presence like this disabled boy. My mom was definitely disappointed, but I can remember not really caring. I was just over it all. Even though, I too was on the road to recovery. I think the exercise of clarifying her frustration and deciding action/tolerate is very helpful. Buying her her own book may be a great next step. I was gifted mine and still have it to this day. There were no parameters on what I wrote or when, just that I did. If my mom ever saw my journal, it wasn’t because I showed it to her lol. And still, the process helped me heal. I can even see the evolution as I read old entries. Agreed, it’s a process.


#15

Hi Jaz,

Thanks for sharing. It really helps a lot.

Allison


#16

You are very welcome. Sent you my email address as well just in case. Prayers up!


#17

My AVM was in between the temporal lobe and parietal lobe when it ruptured. I was age 10 when it happened back 2000 and I’ll admit I’ve never had any tears since then. Not saying that I haven’t had sad feelings or anything but never a drop. I remember when my parents asked about that. It’s buged me because I’ve had the sad feelings when I’ve lost family members and friends but not a drop. It’s strange.


#18

I have the same side effect, I cry over everything or so it seems…


#19

Hello, all!
Just ran into this theme, which caught my eye. I survived a ruptured AVM nearly 25 years ago! I have never mentioned this to doctors, or anyone else for that matter, but I rarely cry now. The last time I really cried wet, slobbering tears was after I asked my neurologist how far along I was with regard to being healed. (This was six months post-op.) He responded “about 90%” and I cried long and hard. Reality hit hard…my life was really going to be different! Since then, I have cried rarely. I have even tried to cry when it seems most appropriate, like after the death of a loved one. I FEEL sad…but no tears. I cope by telling myself that it is just another result of the bleed and that my own experience as a patient and as a critical care nurse have tempered my responses to sadness. Anyway, your shares have helped me immensely and brought me new insight, even this far out from my surgery. And, I thank you!
Lifeisgood


#20

@multistats After my stroke before I got my AVM I cry more easily and I never would cry about anything. Now even if I watch a silly movie and someone dies I get choked up. I think this is normal when the brain has some trauma that something happens. When I first had my stroke I lost my ability to swear which doesnt sound like a big deal but as a woman who worked in a trading you need to be able to swear. I was talking like a five year old when I got mad. saying knuckle head and doo doo head…people were calling my husband. After my first angio/embolism I had another small stroke which brought back my swearing so I was thankful for that. small stroke.
My husband said after his dad had his stroke he would cry but he could not talk and I think it was more from that .