I couldn’t agree with you more on this. A lot of my friends & especially family don’t understand either. Even though I know I shouldn’t I still keep everything to myself because no one will ever truly understand our struggles & frustration unless it was to happen to them & because of this I’ve pushed a lot of people away. It’s sad but I’m trying to slowly get better at this.
2 Likes
27 years - wow. But I’ve got you beat (not that I want to). First diagnosed in 1978. This is my 40 year anniversary and it’s kind of kicking my butt so far this year.
Hi tom, thanks for reply, actually this year is my 30th year post surgery, but yeah your the first person even close let alone more years, Sounds like we are in the same boat, 24 to 50 was a struggle but did “OK” ( I’m now 54) but as soon as I hit 50, the last 4 years have been a full time struggle and I seem to be getting progressively worse, constant perpetual head pain, concentration problems, loss of appetite, sleeping issues, and about 2 years ago I developed a lump on the back on my head between the scalp and skull, I can tell how I’m doing by the size of the lump, smaller for functional and balloons or swells to non functional, meaning I’m not going to be able to accomplish much today, that’s the basics without getting into the medical end, Very hard to except but it is what it is, we are brain surgery survivors, would love to hear more of your story and how you deal with it, thanks again wishing you all the best, or as I like to say, stay strong and carry on !!
Besides for 1978, 1984, 1986, 2009 and then now, I can honestly say that it has been just a nuisance and not anything major. It has taught me a lot about living with limitations. It has taught me a lot about medical issues that people can’t see. Shoot, it even ruined my golf game! Prior to 1986, I could hit a golf ball 225 to 250 yards, after that, if I get 150 to 175 yds, that’s amazing - the embolizations damaged nerves and muscles in my left arm and shoulder.
These last 6 weeks have been the first time where I’m looking at the very real possibility that my limitations might be permanent and might actually keep me from going back to “normal” work. Sobering but at the same time, I don’t want to go back to something that could exacerbate the possibility of a brain bleed and cause worse problems. So, for now, I’m trying to stay quiet and stay focused on realizing that while I have limitations, I am not at the point where I am totally out of commission. Fortunately, my ability to spend time writing on the computer (actually on the iPad more - because it’s less screen and it’s only one thing at a time) opens up possibilities because I love to write and I have a lot of ideas I want to write about. Shameless plug - http://tomvanderwell.net - I’m working on ramping it up into a place for tough discussions about social justice.
I have had a handful of people who have said they would love to hear more of my story and my battle with an AVM. I’m wondering how I’d figure out where and how to do that to impact more people - just on my blog? A cheap Kindle book? Here? Open to all ideas.
Keep in touch and I will as well.
Tom
Hi Tom - and everyone in this thread.
I can fully identify with all that’s been discussed. It’s a hard journey and everyone must deal with it in the way they see best.
@TJ127 - kudos to you for writing your experiences! It’s a great thing to do and will undoubtedly help others in a similar situation. I published my memoir in 2015 which chronicles living with my super-rare AVM, and includes loads of pictures, videos and more. I’ve had some amazing feedback from those either with the AVM or the pituitary condition I also developed, and there’s no greater sensation than knowing you’ve helped someone on their journey.
Keep it up 
Tom,
I’m glad Dan has joined the conversation. Dan has published a book about his condition (which little I have read so far, I have to say fits my sense of humour pretty exactly) and also uses an interesting mixture of straight storytelling and other media. An ideal person to discuss book v website v blog v kindle, etc.
Dan,
Explain a bit more about your book - perfectly ok to do a bit of mild plugging like Tom - and any considerations you had 're the media you chose.
Cheers,
Richard
Hello tom, thanks for reply, my friends call me Andrew, E is so I don’t forget usernames/passwords, lol, you can call me andrew, Well,
you have peeked my interest and I can totally relate, you sounds like you have a great approach and priorities straight, I am very simular to what your saying, by the way, I read one of your other post last night and would ad that I also have that left ear issue, Were was your AVM located ?? We both are obviously old school avmer’s, long before gama knife and the new MRI technology, your my first in counter on that level, how did you find your avm, was your surgery elective?? craniotomy ?? How did surgery go, any complications ??
Great idea with your online stuff, many people could use that and if you get up and running it could turn into a whole new AVM site,
I encourage you to pursue this, Sorry for delayed reply, had a rough AVM day but feeling much better,
I could go on but I think that’s enough for now, Be strong and carry on !! take care,
Dan,
What considerations did you have about whether to write a book v do a blog v do something else online v make the book available as a Kindle edition?
Richard
Tom, this is great news !! So glad to hear you got some rest, you have been fighting hard and sounds like it’s paying off, I so know the no sleep issue and good rest is the starting point to good health and recovery, here’s hoping for a double header, two in a row would be a great indicator of your progress, keep up the great postings and keep us informed, take care and nighty nighty,
annon74079571:
I know exactly how you feel. I am very private and extremely tentative about sharing with others about my AVM. Most of the time, I have no say. I have seizures in front of friends, family, it has also happened a few times in public. I have made up excuses and lies saying that it rarely happens if at all, I even said it was just due to being over stressed (which isn’t completely a lie).
People have distanced themselves from me as well. Some have even have inquired over how many medications I take a day.
I hope that you know you aren’t the only one. It is hard to go though, especially when you feel so alone. But here, we understand.
I hope you seek relief even if it is though this site.
For info, an ANON account is one where someone decided to leave the community. Rather than delete posts when a person leaves (and leave conversations that no longer make sense) the mechanism in the site is that a person’s account is anonymised. Thus ANON won’t reply to your email. They can no longer login.
This prompts me to say that site recommendations are that you don’t give your name in the posts that you write but just rely on your username. This makes the process of anonymisation of accounts effective. However, it is a bit impersonal, so I tend to write my name in. I’d much rather have a great interpersonal relationship with the people in the forum. However this means that if I leave the forum, I need to think about the personal information I’m sharing and that it will always have the label “Richard” with it.
If anyone has wider questions about this area, ask them in the FAQ or Site Feedback categories.
Hope this helps. Unfortunately, ANON won’t reply.
Best,
Richard
I’m going to close this topic. If anyone wants to discuss further the difficulties of discussing our hidden illness with others, do feel free to start a new topic. There is another topic already current.