Hi, when I was diagnosed with my AVM, I felt alone. I didn’t think I would ever meet anyone who has my diagnosis. See, my AVM is located in the Basal Ganglia of my brain and the Basal Ganglia is in the center of the brain so the neurologists couldn’t operate on it via Gamma Knife Radiation for fear that it would cause me to be paralyzed. Because of this, I have had to live with a major tremor in my right arm and the entire right side of my body is weaker than my left. Before I was diagnosed with my AVM, I was right-handed because my tremor wasn’t there. Now, I can barely use it to pour myself a cup of tea. Now, my question to you all is this, have you ever felt like you are stuck in a situation with your AVM that you fear you will never get out of?
My answer is YES, I have absolutely felt that fear before and I remember feeling it a lot when I was your age. My story is different from yours. I had a ruptured cerebral AVM when I was 12 that nearly killed me, I’m 24 now. I still have some symptoms from my rupture today but they are subtle, so subtle that I doubt anyone else notices. I also had residual pain, dizzy spells, and at times weakness from my rupture until I was 22, and between ages 12 - 14 I was in constant pain and would get dizzy spells so intense that I would feel like the whole room was rotating around me rapidly.
As a young pre-teen and teenager I honestly didn’t handle my new experience with a body in pain and a body with limitations well. At that point in my life I self isolated because I was embarrassed to be anything but a healthy kid. I didn’t see a way to be the me I once new so I just stopped talking to people and internalized my frustrations with adjusting to my disability.
If I could go back I would talk to my younger self about how its okay to not be the me I had originally imagined myself to me. I would say that what I’ve learned over time is that change in who you are, in your body is inevitable and while change is unstoppable, human bodies and body/minds are incredibly adaptable. You will find new ways to do things and over time it will become so instinctual that you forget that you once did them in a different way.
Its especially hard I think when we are young to imagine ever being okay with a version of ourselves that is different than the version of ourselves that we most want to be in this moment. But change is constant and we adapt and grow. I’m 24 now and I am a totally different person than I ever could have envisioned myself being at 14 when I was living with effects of rupture. However, even though I’m someone different than I once imagined, I am proud of me and I honestly really love the young adult I’m becoming.
This is super long winded but mostly I wanted to say: YES I have felt that way before and also its okay to change and adapt, maybe we “never get out of” the situation our AVM puts us in but if we can be kind to ourselves then maybe we can find something better than we ever imagined on the other side.
Wow! I am so glad I found people who really understand me. Thank you very much for responding to my post!
Welcome to AVM survivors! It’s great that you found us (and you’ve got quite a tough situation). I’m enjoying your stoicism and Mari’s response a lot.
You’re not alone. I think we have a number of people with an AVM in an untreatable location. I hope some of the others will stop by and introduce themselves.
Feel free to tell us about yourself, get frustrated, shout – whatever you need – and I hope people in similar situations will be there to offer support. In the same way, I love your encouragement to Mari in her thread.
Welcome to our little community!
Although I am 24 and only got diagnosed at 23, I can relate to the struggle of dealing with being told my AVM cannot be fully treated. It was partially treated earlier this year by embolisation but resulted in a bleed during the surgery. This resulted in me losing much of my right visual field in both eyes. Recently found out I had small bleeds in my right posterior and anterior temporal lobes which might explain my trouble with processing speech in my left ear and my memory issues.
It has been a tough road (and still is) accepting the “new me”. Being almost a year post-stroke with improvement plateauing it is more apparent that this is how it is going to be. They dont want to do any more treatment because it’s not suitable for embolisation or GK and craniotomy would mean chopping out all or the majority of my left occipital lobe cause total right side vision loss. I can definently relate to feeling stuck with this AVM.
BUT I think having this community really helps not to feel alone in this. Getting the balance of both making the most of each day and setting short term goals along with not losing hope about the long term future. There are many people without any health conditions whatsoever who have car accidents or head injuries from sports ect. No one is immune to the risk of not growing old but unlike most people - we appreciate being here alot more. We recognise the unpredictability of life and I think it adds to our character, makes us stronger and kinder people for it.
Getting through all you have gone through is in my opinion - pretty bad ass. I wouldn’t call it weakness or something to be ashamed of but actually something to be incredibly proud of! You are already succeeding in a really meaningful way helping many people without even realising it by sharing on this site.
I know my disability is differant to yours and it affects us in different ways but this will not hinder your success. Regardless of my issues, I passed my engineering degree and have been offered a graduate job from one of the top engineering company’s in the UK regardless of being completely open about my deficits. This isnt me trying to brag but to say that reaching our objectives might be more challenging, there may be roadblocks on the way, but we get there in the end. I’m aware that to achieve the same as others our age wont be as easy. That there will always be some down days but there will also be good days and great experiences to come.
Sorry about the long essay. What I’m trying to say is that it may be much harder at your age but things will get better with time and this won’t prevent you from being successful or being accepted by people or growing to love yourself.
Hope this ramble helps in some way.
Thanks for the post. This quote in particular really hit home today
Welcome to the sight. I have an AVM with an aneurysm, which is inoperable. I’m a former fighter and Martial Arts instructor. I am recently diagnosed and my life seemed to come to a full stop. Since finding this site, I have had some great advice and comfort, from some great people. I wish you well and hope your story turns into a good one.
Best of luck…
@corrine This website is just what I need to find people who I can relate to, like you! Even though I can’t relate physically, I still can relate emotionally. You seem like an amazing person and I thank you for sending me your post. Thank you for telling me it will get better because I’m struggling with the thought that it doesn’t get better and you have given me hope. I can’t thank you enough for your post!
Dear Mr. Mick, when I was diagnosed with my AVM, I thought that my life was at a stop too. I felt that I couldn’t do anything that a kid without an AVM could do, but, like Corrine said,
So we, as a small community, understand the value of life and so we will be a message to those who don’t understand.
I hope this helps and If it doesn’t, tell me and I will delete it.
I’m so happy to hear my reply helped you, I was a bit nervous of how I would come across at first! Yes there is definently hope. I am confident as the years go on you will be posting updates and be giving people the age you are now hope and inspiration seeing that things do get better.
Being your age is already difficult let alone with the AVM to add to it - I may not have been diagnosed at your age but goodness, my teens definently weren’t my most fondest of times. Hopefully you can learn from my mistakes and reach that happy point sooner! I really took life for granted and spent so much time stressing over unnecessary things - friendship drama, the odd bit of acne or seeing a bad grade as the end of my world. Looking back I wish I could have known how far I’d come in the future, been kinder to myself and loved myself more.
Regardless though, that younger Corrine made me the woman I am now. You will turn out even stronger than me because you see everything in perspective. Please do keep us updated.
Every message is of help, thank you, always appreciated…
Hi Corrine, Thank you so much for all your positive messages. This condition has brought gifts along with fear and pain. I know today who my real friends are. Some of the disillusionment was painful but it’s still a valuable knowledge. I don’t need to waste any more time on people who use the word "friend " when what they are in an acquaintance. I’m so grateful for the people who showed up for me, who showed their caring in actions, not just words. New people have come into my life and I value my life so much now that only those whose values are similar to mine, only those I enjoy being with, get to be in my life. I felt guilty before for choosing. Now I relish my choices. Like you, I have given up the drama that i thought made my life exciting. I equated drama with 'really living '. Today I choose peace, contentment, moving forward with my life in whatever way pleases me. I love my life today and see my being disabled as a blessing. I don’t plan on making disability a permanent way of life but I can accept whatever comes. Before, I was a fighter and needed to be right. Now I can see all points of view and not take them personally. I am being kinder to myself and others and loving myself and them more. Thanks again.
Hi Logan, I hope that you’ll keep us all up with how you are doing. I suspect that, like it has been for me, life will be different but that doesn’t have to mean that it’s less enjoyable or that you, as a person, are diminished. I have taken this health challenge as an opportunity to grow as a person, to come to terms with life as it is and to make lemonade out of my lemons. Thinking of you and caring. Lyla
You and I are so similar. AVM left side of brain that’s basically in the middle. Let me tell ya, I was right handed too. In 7th grade, I noticed that I wrote faster with my left hand so I switched. Over time, I noticed the right side of my body shriveling up often. Occasionally, I would go to the doctor and express that I experienced issues with the nerves in my hand and in my toes. I didn’t know how to explain it really. I got diagnosed almost 1 year ago. It’s been the most challenging year of my life but it’s also been incredible. You’re never stuck. Hang in there.
@eickhoffl21 I can relate to your statement saying that
My AVM has been very challenging but I am also grateful for it, too! It has opened my eyes to the value of life. For example, I used to take my life for granted and hate that I wasn’t as athletic as the next guy but now, instead, I love my life (though it can be irritating.)
The simplest answer is YES! Its safe to say we all feel like this from time to time and as life goes on its proven that time heals and we need to keep positive and move forward and live our best lives… God bless!
Hi Logan. I too am in this position. I have a large AVM in the Cerebellum. It is not suitable for surgery due to it location (too risky) and although there was some suggestion of GK I have been advised the best option is to leave well alone. At 24 it was hard to accept this. But I’m 45 now and still here. So it was great advice so far. I try to take each day as it comes and make the most of everything. In general I have accepted that this is who I am. Fortunately I have a wonderful family who are very supportive. All the best to you. Lulu x