I’m sorry to hear that you have to go without love and to sacrifice your own dreams - thanks for commenting I wish I could help, would it ever be possible for you to leave your parents shop? chase your own dreams?
Thanks for responding! Multitasking is hard for me too, especially when it comes to socialization and I have days where I just have brain fog that comes out of nowhere and I mix up words a bunch on those days. Its funny having had an AVM rupture as a child sometimes I wonder with the symptoms if its my brain injury or if its who I always would’ve been. But I know at the end of the day it doesn’t matter because its who I am.
Do you enjoy your job? Do you find it easy to relate to other people your age?
I can’t even if I want to… Tons of things to figure out… Seizures aren’t making it right making me tired stressed and more n more… Allot difficult than sounds… But every one is different and everything is different it’s your choice to make and you have to live it with rest of your life
Hi everyone - sorry I’m late to join,
I can relate to the issues with peers and the fear of mortality.
My AVM only started to present issues from the age of 18 or so. From then my energy levels+ability to concentrate become more and more unmanageable and I wasn’t aware there was anything wrong. I struggled to complete my degree but managed to do well. I’ve never had good energy levels and always thought being lazy, slow and inconsistent was a part of my identity. Finally got diagnosed at 23 (24 now) on May 17 after a year of fast decline. Found out I had a highly aggressive, high flow, large AVM in my left occipital lobe that was causing gradual brain damage over the years. If it had been left any longer it would have bled and I’d have died.
I had a stroke during my emboliation causing me to become permanently partially sighted (so will never be able to drive), poor memory, energy problems, orientation and visual processing problems. I have partial seizures (occipital so only affects my vision) both pre and post embo.
My neuro team has recently decided I am not a candidate for GK or another embolisation. I’ve been told it has recruited more feeders so now the flow is higher than post embo but not as high as pre embo. It is likely to grow larger with time but they want to leave and monitor it because craniotomy will leave me with 100% chance total right side vision loss in both eyes.
It is difficult being aware of the risk of a bleed. Im scared of accepting a life with this thing still there. It is difficult thinking about the past and what I would have done differently and how I took things for granted. Also at this age, friends don’t really know how to relate to this and they are busy working or traveling or with their relationships to give support. My boyfriend of 2.5 years wasn’t understanding to the point we broke up a month before my embolisation and he didn’t turn up on my surgery day.
There is a disconnect with most people our age because their idea of a big deal is minimal compared to our idea of a big deal. It’s a challenge trying to relate to them and their issues and for them to try to relate to ours. I think most can’t handle it because it triggers their sense of comfort wanting to stay ignorant to the reality of how vulnerable we all are as humans and living until 80+ is not a garuntee.
The thing is though - I think in some ways we are better off than alot of people. We have been exposed to recognising our mortality. To having a reference point to life’s stresses. We wont take the little things for granted or waste time in the situations that we can control. Some people spend their whole lives not appreciating the little things, wasting time on pointlessly worrying about people who will mean nothing to them in 5 years time, not taking initiative for their own happiness and being miserable over things they can change because of complacency.
We don’t have the comfort of being able to be ignorant enough to waste our opportunities. We realise our real needs from relationships - not the superficial stuff but wanting someone who is loyal and supportive and makes you feel good around them. We know the power of the now and not later. If you told me 2 years ago that I would lose a good chunk of my vision or have half of my long head of hair fall out - I would go into panic thinking I’d not cope and my world would fall apart.
Living at home still was the last thing I had planned for having always been a highly motivated and independant person. But I know it is a matter of patience. It’ll happen, it’s just about trying to enjoy the journey in the mean time
We realise we are strong and alot doesn’t phase us. This humbles us and makes us appreciate the few who really do care and makes us alot more empathetic as people. Im done with worrying about the things I can’t control. I’m done wasting time on relationships and situations that don’t make me happy. I’m done with not having self love or confidence issues because heck - we have alot to love ourselves and be proud of getting through all this. We have many achievements to feel good about.
I have lost out on 2/3 years of academic+career progress to this condition but ive gained significant emotional progress and life experience+awareness. It’s easy to compare our lives to our peers but as I said - they may be ahead of us in some ways but in others we are ahead so it balances out so no one is “more accomplished” and no one is a failure.
I think I’ll make a little group chat for us so we all have someone to talk to and relate to.
Sorry for the essay lol
I can, although I was a bit older when I was supposed to start digging my grave. Doctors are taught to think horses when they hear hoof beats, not zebras. Instead of being studied as zebras, we fall to the wayside for most medical professionals, we’re outliers because we don’t fit the mold or the averages.
All you can do is soldier on and ever forward
Hi Mari. Just read your post and wanted to say hello. My AVM caused me to suffer hydrocephalus at age 12. The docs all told me it was migraine but fortunately my mum was astute enough to recognise something wasn’t right as the pain was something else. At 14 I had an MRI and was rushed into hospital for an emergency op to fit a VP Shunt as I was on the verge of having a haemorrhage. After the MI the docs said I had a ‘birthmark’ on my brain! Actually it was an AVM but they couldn’t tell until I was 27. My AVM had never ruptured and I’m now 45. Like you I feel so incredibly lucky to be here and I thank the stars every day. I have accepted my AVM (and associated problems) as part of me that has made me who I am. Very best wishes and good luck with your future health. Lulu x
Hi I had a ruptured AVM at 15 years old and I am now 34. I unfortunately have residual now …not thrilled about that because I thought it was gone 19 years ago. Anyway I have struggled a lot through the years understanding who I am post surgery and language damage. Yes most people dont notice it much anymore but I still do. I skip words all the time when I type and forget words/mix words all the time…I have aphasia. I am so thankful of where I am today and the life I was given, but like you I wonder if some things were damage or if it is just my personality. Its nice to hear I am not the only one who also struggled in this way. I actually had to do some therapy called DBT just to help me to allow myself to be comfortable in this version of me.I am such a perfestionist and I was just too hard on myself. I needed to allow myself to find my talents in Kelli version 2 My perspective in life was different after the surgery, it just kinda hit me the hardest when I was about 25 years old though. I think it was becasue up to that point i was working hard at getting better, finishing high school and college so i was so goal driven those 10 years. This was when my anxiety and fear of death hit me hard. I feel unless you have experienced something like this it is hard to explain this to other 25 year old lol. I say we have to find what is our happiness and those who support us most. I feel this is the life i was meant to have and lucky to have my life and having you all here. Cheers to the younger AVM tribe here!!
Hi, I haven’t responded here earlier as I wasn’t sure I had much to add. I had my AVM rupture at 48, my goal became to live to 50. My kids were 10 and 12 at the time. Well I rolled past 50 and have an angio coming in the new year to see if Gamma Knife has done its duty. We have an “invisible illness”, whether active AVM, ruptured AVM, side effects from treatment, or not treated etc…Its one of those things most will not understand, we often look fine and that is what people see, really similar to mental health struggles.
I retired from one job after 28 1/2 years this summer and now have another. My goal is to collect the pension for longer than I paid in, but I’m going to treat everyday like it may be my last. And I don’t mean spending like a drunken sailor but controlling my perspective on things, always trying to look at the good, working in a job I enjoy and caring. I can only control me, and I like to think a little bit in regards to the two teenagers in my house!
Sorry, that is a long way to say that you’re lucky to be only 24, live without regrets and enjoy the journey!
@marimariposa I would have to say I can relate to a degree. I’m not as old as you so I don’t know if this is different but sometimes when I daydream about my future and what it will be like, a thought pops into my head: What is the point in thinking about my future when there very well couldn’t be a future to think about? The doctors told me I was going to die in a week because of my avm… that was 5 years ago! So with that being said, I think about it this way: Everybody on this earth is not promised a tomorrow, however, we still go about our daily lives hoping that there will be a tomorrow. I really hope this helps and if it doesn’t, tell me and I will delete it.
Hey Corrine, I can relate to your situation. You’re not alone, Im 24 now I had a rupture when I was 20 leaving me partially paralyzed in my right half, that all slowly came back and i had my GK surgery when I was 21, now they have diagnosed me with epilepsy and I have to take medication for my seizures which Ive only ever had 3 of , and I have pretty severe nerve damage in my right arm but other than that Im back to normal. Our situations suck yes, but they could always be worse. I feel now that I have had a brush with death I look at life in a totally different way, I cant take the little things for granted anymore, I can empathize with people more and forgive. Most people our age don’t understand, and thats ok. Im curious as to why you aren’t a candidate for GK? If thats too personal and you don’t want to share thats totally fine, I wish you best of luck and thank you for sharing your story.
Hey Logan, my name is Cody and thank you so much for sharing what you shared, this is the perfect community to talk to if you ever have questions or just need somebody to talk to. Best of luck with everything you’re going through.
Welcome to the site. I think that everyone who has or had an AVM can relate to your fears. We also celebrate all of your accomplishments to date. Dam what the doctor’s have said. How dare they put a time-line on your life span. You are here! You are alive! You still have time to chance to accomplish whatever you want in life. My AVM is 4 years old. When I asked my doctor what can I do now that I have an AVM? He said, quite emphatically, " live your life". Tomorrow is not promised to anybody, but P&P (Prayer & Patience) will help sustain you while you are on your AVM journey. Make your life choices based on your heart, not on your AVM. We are here to support and encourage you on your journey. I’m not saying it’s easy, because it’s not, and you are not alone in this. I wish you all the best now and in the future. If nothing else, you have figured out that you indeed have a future.
Thankyou for sharing your story! You have gone through an awful lot and ofcourse, I am open to any questions.
I was told by a senior neuroradiologist that since I have so much glue in my AVM that GK would unlikely work at completely irradicating my AVM because the glue would absorb the radiation. I am not sure if that’s the reason. It could be because of risk of necrosis because of the location since my AVM is deeply nested in the lobe. I’ll be finding out more during my MDT meeting on 9th Jan!
Definently agree fully with all you have said, I feel the same way. Im at peace with my disability and I’ve adapted really well - if I do say so myself I take power in the things do have control over rather than focusing on what I can’t. I can’t change others or my AVM but I have changed my mind-set, worked on self-development and take initative to choose how I want to live my life and who I want to be a part of it.
I can forgive but I can also recognise who I need to keep at arms length. Your right about empathising too. It doesn’t matter if someones upset over something that could be seen as relatively petty, peoples feelings should be validated rather than shamed. I realise that after you die, what is left is the love you’ve given into the world, the people you have touched, the memories you have left behind.
Lovely to hear from someone who feels the same way I do.
Best of wishes,
Hi Mari, I’ve had that same question for decades. How much of my emotional/memory issues is due to my AVM rupture and surgeries and siezures?
I don’t know if it matters for me. I think it might for people I may have hurt or dissapointed because of that. (There are many.)
You’re right that it’s “who I am.” But still if I knew more about the emotional side-effects I would definitely have kept myself out of risky situations/jobs.
I’m from a generation before multi-tasking so I’ve never missed it. And to tell you the truth I’d rather concentrate on one task at a time. Keep up the good work.
Hi JD, Bless your heart for sharing. You are an inspiration for me. My rupture/surgeries happened when I was 14 (I’m 59). I’ve had grand mal siezures ever since.
The point you made that this is an “invisible illness” really resonated with me since I think my emotional issues are inter-connected. I wish I could have had a forum to learn from others living through the same ordeal.
Just having a place for people here to talk about their fear is very valuable. Fear it seems is a common denominator in this ordeal.
I can’t think of any words at the moment to reduce anyone’s fears. But I did read some beautiful posts here about living for the moment and having hope.
I’m glad you had the GK option and I hope it “did its duty.” Thanks for sharing.
I’ve had a lot of the same nagging questions and struggles as you. I loved the way you said “Kelli version 2”. I feel by posting on this forum I’m working on a new version of me because I’ve never really confronted this ordeal or divulged it to anyone.
In the ICU post surgery a dear family friend/doctor visited me and said, “I bet I know what you’re thinking…” “Why me?” He hit the nail on the head. It still amazes me that he knew that.
After 45 years I’m no closer to the answer. Even if I had an answer it would be different for everyone.
Instead I think it’s the question itself that matters. It shows that even at 14 I felt life has a purpose and I care about what my purpose is here.
One thing I’ve definitely learned is that part of my “purpose” is to try to serve people. (Frequently not possible) I am convinced that life is meaningful. (irrespective of religion) Keep up the good work on K v 2.
What a story you have here! Your life, I feel, is a MIRACLE, and God must be saying ‘You have more work to be done here.’ Hopefully, you could help others patients who have ruptured things going on w/them? Just a thought.
God Bless You.
Just passing by to say that your story is really inspiring. My wife has 31 years old and is recovering from a recent major avm bleeding, and I’ve read your story to her and she also felt inspired. Thank you for sharing! Best, Luiz.
I’m really glad my story helped your wife at such a difficult time. At first it is hard to see the light on the other side of the tunnel. Things will get better and you will work through this as a unit.
Keep us updated on how you are both doing