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AVM Survivors Network

Discussing my issues IS hard & difficult

I have found it very difficult to be forthcoming about my AVM & associated experiences with anyone except medical personnel or AVMers. Mainly because most people can’t fathom “that” actually happening to any one, & then they try to dismiss it as just another thing. Admitted some AVM’s are less than others, but they ALL need to be shown importance & concern for what they are.
I have found some release of stress and helpful info here on AVM Survivors Network. I know if it’s helping me, alls anyone has to do is visit this site, it will help.
I am finding it very hard to share on this site because of past ridicule I’ve experienced (not on this site). But I’m trying everyday to cope with my situation pretty much on my own. Just looking for mutual support and respect.
Not the quickest at typing, but trying

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Hello
Think of how little you knew about AVMs before your diagnosis. Probably not much and to people that have never heard of this, the very thought of something going on in your head is
so bizarre that just being around you makes them feel your brains will explode in front of them. That is how I was treated even by my own husband. When my vascular brain surgeon sat us down and told us I had weeks to live, he was so detached, never one word of comfort to me! He buried his head in the sand, my friends ran away. All but one and some special people here at this site. That’s all you need. People get afraid and run or just ignore you. So you need a family member to lend a shoulder and then take advantage of talking and asking
questions of the people here. There are so many symptoms that are mysterious to you, but not to us. I’m cured now 3 years and just thankful to be alive. I feel fortunate that I at least had one real friend that was so kind to me. It took me driving from New Jersey to Florida, having seizures, vertigo, foot drop, slurring and blue flashes but I made it. Left all the useless
humans behind. Don’t allow the ignorant people to be another illness. You have to focus on healing and caring for yourself. The wonderful thing about groups like this is getting information. AVMs can be treated and even cured while we are still living!! Praying for you.

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This site is good for support and making you realize you are not the only one dealing with these issues.
Many of my friends have distanced themselves as they dont knowhow to deal with the new me.
I cant do some of the things i use to and they dont want to alter their lifestyle.
My wife and daughter have been great but you do realize who your true friends are.

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Thank You Mike5 & Jappy for your replies.

Hey!
Hang in there, I know that is easier said than done. The only person I have is my husband, he has never left my side. However, my family and friends choose not to understand it.
It is extremely hard, there are so many symptoms and weird things that happen that it’s almost easier to keep it to yourself. I was so grateful when I found this site and still am. It’s the one place you know that no one is judging you. Best wishes to you!!

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I check this forum a lot, even if I don’t post.

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Yeah, me too.

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You are right! It is easier to keep to myself. Don’t worry, I’m strapped in my seat for the rest of this ride, lol. Thanks

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So my 27 yr old has avm it’s small but location is right side of brain. He hasn’t been to work since Sept 1 . I have been very busy tryin to fill out paperwork for him for SSI SSD and he has used a all his FMLA leave. He is scheduled for radiation treatment in October had his anagram procedure on this past Thurs . Dr says he should give up smoking cigars and even pot he says he is vaporizer not sure if that is better or what. This was the first thing he did when he came home from anagram. I am so stressed and frustrating with him feel like he don’t appreciate me. He feels I don’t understand his medical issues. I do am bi polar and can’t handle stress which he is causing me more with his lack of concern advice please or suggestions I am the only one there so to say. I am not financially well off on disability myself. I paid over 1300 for his expenses in sept . Wtf do I do to keep him calm and not turn into a confrontation ??? Thx all

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O my god bless you, everyone’s different,. You have to find what works for the two of you,I am 27+ yrs, post surgery, and it’s been a battle,. My main source of relief is legally obtained medical marjuana it has been a miracle drug for me, I also am financially busted, I have been trying for 3 years now on SSI stuff, I’m told from people who have been thru it and got that I need a heavy hitter lawyer to get it and that it is worth there fee, I recently came across this site and it’s been very helpful, YOU ARE NOT ALONE, We are all here for you, I really feel for your situation, try your best to be strong and positive, any questions please feel free to contact me,

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Does he have any paralysis, speech issues, or mental issues? If so, any one of could help sway a decision. Not trying to be morbid, just honest.

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No,. He didn’t have any of those conditions, as far as morbid?? We’re AVM survivors, no worries

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My AVM was removed 27 years ago. There are few people for me that will talk about it. Most think it’s like a cut on a finger and when it heals, it’s all over. When I try to talk about the memory problems, depression, etc; they shut down and end the conversation.

I’ve found it better to stop talking to them about these changes. They don’t want to believe they exist. This is not the easy way for me. I was never that good at talking to people and depression is not new. But, a doctor told me that the AVM was depriving a part of my brain with good blood long before seizures and bleeds and operations. He was not surprised That there were signals ahead of time.

I’m glad to have this place to talk to others. It helps to see that I’m not the worst case. I’ve got something to be thankful for. It’s also good to see how others have found solutions. I’ve used them when I can.

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Hi everyone, I would like to introduce myself first. I was diagnosed with a Brain AVM on the border of both lobes about 3 cm. I had not symptoms to begin with but just headaches and constant ear pressure. I recently got my Gamma knife surgery done.
To begin with I took it strongly baeause it was a huge shock, I felt like my world will end anytime and I am going to die no matter what.
Now after a few months I feel every bit of it!! Things effects me, people effect me, I get tired way too fast, I don’t feel the same person that I was before. I don’t know how to deal with all this. I am glad this thread started. Let’s just vent out here coz only we can understand each other…

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Armand, well put my friend, your the first old school avm’er I’ve met here, I’m right at 27 +/- yrs. post surgery, I recently found this site and yes very helpful, as you said we seem to be the only ones who understand or can relate, compliments on a great posting/ reply

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You’re right, it can be v difficult.

think it is like any “hidden” illness, injury or disability. Since it is hidden, within, and the effects (re a brain avm) often within us, it is bound to be difficult for other people to understand what it is like because there is nothing they can see.

If you have other friends, relatives, neighbours or work colleagues who also have a hidden impairment of some kind, they’ll be in the same situation. Not just avmers, anyone with a hidden thing. As well as this forum, site, you may also be able to find other people who understand. Rare, but don’t limit yourself to avmers.

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Yes, you are right, I have been talking to my partner’s cousin who is deaf as a result of childhood meningitis. She has an early version cochlea implant. She is now in her mid 20s and is finishing a PHd and has been struggling with over stimulation from the implant- overstimulation has been a problem we are both experiencing. After I had the craniotomy to remove the AVM I was warned by the cardiovascular nurse who was looking after my recovery that I would get tired very quickly the recovery would be better if I did not use my phone or read for two weeks after discharge. I still struggle with overstimulation and tiredness, it is certainly not as extreme as it was. But talking to the friend about how she manages the stress this causes has been really helpful. I know how to recognise the signs now and stop what I am doing and turn out the lights. I do find it is like having an on/off switch. My partner notices as my speech becomes slurred or garbled. But until I reach this point I appear fine, but it is like a hitting an invisible wall and I am quite scared of people at work seeing me like this as I know it can be frightening. I think a lot about the line in the last David Bowie single “I have scars that can’t be seen”, this is a line that is true for lots of conditions. People are very difficult to talk with about this and yes it has ended friendships, but it has also made me perceive things very differently and I am glad of that. I try to look at the experience I have had as a transformation, this is very hard some days, even impossible, but other days I feel very positive about it. It is 16 months since I had surgery and it was incredibly hard, but the recovery has been harder because as many people say here, once the active medical part, the procedure is over, its as though you are meant to be all better- its not a broken leg or a resetting of a bone and this condition can’t be understood like that- but then its the only frame of reference quite a lot people have and thats no bad thing because none if us had a choice in having this condition- its just managing how to deal with that.

I know I struggle with memory problems, I have systems to cope, but its frustrating. Colleagues and friends say it is a sign of getting older, but I am 36 and I know it is different now. Equally my scar on and indentation on my head is well covered by hair, this was very tricky immediately after the operation because I looked fine. It feels vain, but it isn’t meant to be, but I realised everyone close to me had expected a significant scar. I am recounting a purely person experience but subsequently when I returned to work, some people treated me on sight as if I had been on holiday, as though I had not had major surgery. And I realised how illness seems to be all about what is visible. I used to get angry about this and want to draw attention to the scar I have. But then I considered why I had had to have the operation and the fact that no one in that scenario would come out of it feeling good. It is frustrating in the UK as it is termed as elective surgery, but its really having surgery in a timely manner so the condition doesn’t reach a crisis where the choices are limited and about damage limitation. I often think I just want to be well, but I have realised this is what it is and I have to work with what I have and every day is different and I have to take people as I find them.

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Omg u sound like my son he finds relief in the mj too. It’s been hard on him and me his mom but we r pursuing SSI and SSD git to be persistent and check on their website son now in depression anxiety stressful lost job cuz panic attack and headaches had seizure last yr luckily no more since on meds I worry since he lives alone

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Pamm, thank you for reply,. Yes,. It sounds like your describing me,
how old is your son, how long post surgery, I also live alone and It can
be a little Scarry at times, I’ve just about given up on SSI, i turned it
down post surgery, now 27yrs, later, when I really need help, there
saying that just proves I don’t need it, my DR, is livid,. I’ve been
abandoned by family and so called friends,. the only thing I have is my
church, and AVM .org, he is very fortunate to have you, you both need
to realize it’s equally challenging on both of you, just in different
ways, all he needs to know is that you are there for him when he needs
you,.the rest is out of are hands, How are you doing?? God bless,
take care, PS. Your the first one to respond via e mail,. I’m fairly new
here,

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Well glad to hear the mj helps u out my worries with that is he is now smoking the hash part of it . Since u are a smoker is that better or worse for him? He goes in this Tues 25 for his first and hopefully only round of RADIATION treatment it all depends on how long the brain can handle the radiation treatment and he can lay still with the face mask on . I am on fb not sure if u fo fb but please keep in touch or email me back . Thx for the info take care. Did this affect your mental health in any way as it has on my son depression anxiety stressful doesn’t like crowded places takes forever for daily task application for SSI SSD already done now waiting for their decision. He is seein a

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