Hello to all, Thank you for having me, this is difficult for me but will do my best to introduce myself, My name is Andrew John Jugan, 52 yrs, old,. self employed electrician since 1995, My surgery was a difficult life changing experience, it has effected my life totally and completely, We all know the story, for me, at the age of 23/24, (I beleave seizure was 23 and surgery 24) I was watching johnny Carson and feel asleep, when I next opened my eyes, I was outside, strapped to a gurny being rushed off the second floor of a hotel room , o ya one of the first times doing road work, no one would tell me what’s going on and I’m being accused off being a hard core drug addict, Surgery?? Well I woke up in the middle of surgery,I was mostly coherent when I was out,. I could feel and here what was going on,I flat lined twice, and had some kind of life changing spiritual experience that i’ve never been able to explain,. and come out a completely different human being, recovery mode just about 2 yrs, went on to do some great personal accomplishments, once I hit 50 it was like turning off the power switch,really need some one who understands, some AVM friends, have been feeling so alone lately, people think it’s a cop out excuse or take an aspirin and man up,how many times you here that, really hoping to meet and share with others, I have found diet and sleep to be essential, combined with exercise but that is a very fine line,easy does it!! God bless, look forward to hearing you, open to any and all questions/info. : )
I myself am a survivor and I totally understand how you are feeling now that your 50(ish)! My bleed happened when I was 43 and I am now 54. Life was a little easier after the bleed when I was still in my 40’s. I was able to work part-time until about 4 years ago. Combining our situation with increasing age it does seem as though fatigue comes along a little more easily and often. Just wanted to let you know that someone does understand where you are and how you feel. And yes exercise, done with caution, does help. You must keep yourself engaged in a hobby, volunteering, an interest of any sort and stay close to family. This is a great website where you can share your thoughts and feelings. Best to you !
Thank you so much for your reply, I’ve never had anyone who understands to talk to,. My doctors can’t even relate, or i donr feel they do, they just want us to deal with, unfortunately I don’t have a good family support system, they just say I have to try harder or I’m lazy, or I’m moody,ect ext, it took everything I had post surgery to 50, last two years have been more like pre surgery and no one will listen, after 27+ yrs back on blood thinners and anti seizure meds,. Fatiguing harder and faster day by day, I could go on and on lol, thanks for listening : )
Hi again…glad I could offer you some compassion. As for the doctors, well, my guess is that’s there is not a lot they can do for our situation. I did have one doc who prescribed ADHD type meds that worked for a short period of time but is not a long term solution to fatigue and cognitive focus. But the use of these meds is controversial in the medical community as to whether or not they are a good solution for stroke victims because they can have bad side effects. Seeing a therapist on occasion to discuss/vent frustrations with the changes in your life can be helpful. It’s a huge adjustment that can take some people years to accept…like me. I’m a slow learner! I keep trying new things though and some work out and some do not. I am sorry you do not have as much family support as you should, I do get that, but I think they don’t really know what to do either! There is a book I bought by Jon-Kabat Zinn about mindfulness called “Full Catastophe Living” you might want to look into. It is interesting and helpful. Practicing mindfulness can make your life a little easier. Check it out.
Have a great day
Wow, thank you so much, I’m new to this and didn’t look into a survivors group until I started having issues, post surgery I took my time and figured out my limitations, so for better part of 25+ yrs I did “ok” but at 50, o my , last two yrs been rough, nothing seems to work anymore and I’m not willing to give up, I have been seeing a therapist for almost those two yrs, she takes notes from me,“can I use that” lol, I will definitely check out book, thank you for caring enough to make a difference in a stranger’s life,god bless
Hey there - I just joined today - recently had a “re occurrence” of the same sensation I had some 20 - 25 years ago, when (as I later discovered) I had my initial “bout” of vertigo, weight loss, anxiety, etc. which led me to subsequently do some vigorous research into my issues and discover that I had/have an AVM on my brain stem, which had hemorrhaged.
I am just beginning to search this site, and came across your post, and wanted to lend my support. As I’m sure many others on here must know, there are many issues associated with having this condition, and for me one of the most annoying is the frustration I feel that others, be they friends, relatives or associates, can’t “feel” or “know” (the way I do) that I don’t feel “normal” anymore, i.e. don’t have the same sense of balance, vision, speech, cognitive functionality that I USED to. It’s as if I’ve been denied my “full sense of self” - the “self” that I had grown used to, for, in my case some 40 - 45 years.
Don’t lose the faith buddy - if it’s any comfort, there are others, like me, who understand exactly what you have been/are going through.
Hello and a big huge thank you with love to all my avm’ers out there, can not thank you all enough for your kind encouraging post’s, I haven’t posted in awhile due to most recent “issues” but I’m fighting hard and want everyone to know that it truly does help,THANK YOU!! Also to Richard for putting this all together for me,
Hello my friends, latest update:, after just over two years,I have been accepted to Barrows nuerological institute, in PHX, this is due to a lump that has recently formed on my head, this is 28+ years post surgery, thought I had put this all behind me, really been struggling lately and I am praying for answers, please pray with me,
A wow Andrew, I can’t imagine, I am 54 and have an AVM in the right frontal lobe, not yet had surgery, I with you the best, nice to meet you.
Praying for you Andrew.
Mini, thank you for reply, best to you, stay strong and carry on,
Smitty, one of the nicest most encouraging post I’ve gotten,vthank you very much my friend,
Mini, just wanted to say hi, been awhile, wanted to see how you are doing, how goes the battle?? Really appreciated your reply’s, thank you
Hey Sparky, it’s been 3 plus years. How did things turn out?
First of all I want to tell you that you are not alone. You can consider me your AVM friend. My avm was discovered in 1984 when I was 8, the treatment I received was in experimental phase at that time. I have survived 4 strokes, received the last rights several times. I feel grateful and blessed to be alive. I have had to face many challenges and am determined to make the best of the gifts that God gave me. I believe we are all here for a reason. Please feel free to contact me. Love, Angie