Hi my name is Gill I’m from Australia. I have avm of right arm shoulder and chest I have what my doctors say is thousands of avms throughout chest shoulder and right arm I have arterial embilisations every 4 to 6 weeks the treatment leaves me with necrosis nerve damage etc I’m not complaining just telling you. I’m interested in chatting to some of you guys about your experience cheers
Gosh, Gill! That’s a trial and a half! We do have one or two members with multiple AVMs or HHT who are going through a tough time, too. Do have a look through the Pulmonary, Heart and HHT group & category, or you may also find friends among the Extremity group & category.
Its great to have you with us.
Lots of love,
Richard
Thank you Richard for your reply I will have a have a look at other groups as well
Lifeisgood here!
I will celebrate 24 years post-cerebellar AVM surgery in September. It was urgent, as it ruptured. (I had not known about the AVM.). Life changed 180 degrees, from my prospective, and that was difficult. No one knows “if” or “when” something like this will happen in life. But, as the old saying goes, “When one door closes, another door…”. There are ways to make life satisfying and contribute to our communities.
Thank you lifeisgood great guns on the 24yrs no trouble all my best to you for the future
Hi Gill, welcome to AVM survivors 
I have an unruptured left frontal lobe avm which is being ‘treated’ but your’s sounds like a real trial and very painful with lots of treatment to keep it as minimal as possible. Sending healing hugs x
Hello yas I hope you are doing well with your avm dramas.Thank you for your kind words and to everyone who has left a reply your kindness is something I have never had my way cheers
Hello Gilly, great to have you with us here. I have a left temporal AVM which bleed, and has been treated by gamma knife. Mine seems really simple compared to the battle you’re in! I’ll certainly be thinking of you, wishing you the best. John
Hey John thanks for the reply I truly wish for the very best in your treatment hope you have a permanent fix I imagine consistent treatment on your brain avm wouldn’t be a walk in the park!!.all the best if need anyone to chat to don’t hesitate to msg me
Hi,
My name is Daniel, I am 28 found out about my AVM in January. I have decided to not pursue surgery or treatment at this point and just am looking for support from anyone who can relate to my condition.
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Hey Daniel if you don’t mind my asking where is your avm?. Brave move not taking action to rectify the avm I admit the treatment is very unpleasant and daunting to think about but it goes to a greater good your health. An untreated avm is a huge risk and if you have multiple avm huge stress on your heart and the rest of your body.if you have any questions don’t hesitate to ask and I’m sure everyone in avm survivors will the support has been great and I’ve only been a member for under a week
Thanks for your response, it is in my right frontal lobe in my brain
No worries Daniel very different to my avm’s if the anxiety of getting treatment is what is getting in the way just think about how much is on the line if you don’t. Go see different doctors and get many opinions before anything is set in concrete I went through 3 different vascular surgeons until I got any answers
I am really at the point of just trying to enjoy the rest of my life to the best of my abilities. For some even my own family this is devastating, for me it is more like a miracle. My AVM has given me the courage to be myself more, do things I dreamed of and never did, and completely changed my perspective on life. I have had many opinions done my angiogram, been to cancer treatment centers to discuss radiation surgery, and have spoke with a few neurosurgeons several times for hours asking question after question. Neither option is good for me at this point of my life, so I am slowly realizing any day my AVM hasn’t bleed out is a good day for me despite what happens.
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Daniel,
I think I can understand both points of view: if my son, aged 28 had an AVM diagnosis, I think I’d be with your family: “OMG!!” However, I also understand the impetus that it has given you to re-evaluate life and what you want to achieve. That’s definitely a good thing. I think it’s fair to say a diagnosis such as we have had is definitely a life re-evaluation moment!
Very best of luck! I assume if it does start to give you any issues, you would go back and get your risks and options reassessed.
It’s definitely as hard, if not harder sometimes, for friends and family to accept our diagnoses than us.
Very best wishes,
Richard
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Very hard to gauge I know and there is nothing more annoying than bad advice!!!
But I can say this much if I never started to get treatment I wouldn’t be here!!! A bleed out or heart failure would have got me not that I’m out of the woods by any stretch and as I said before our condition is the same but chalk and cheese comparing and I would never compare what I’m going through to what anyone else is going through in saying this I have had more than 30 embilizations
With varying results (loss of nerves necrosis skin grafts lost the use of my hand and battled through to regain use still no feeling in it but can use to a degree ) point of my rant is I was scared as he’ll with no choice but to start treating my condition
It has been a tough run but with my wife’s endless support and of course family and friends I have made it this far take what you want from what I’ve said I sincerely wish you all the best and hope you grow ever stronger in you journey
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Hi how did you hear about your AVM ? I’ve had surgery for a brain AVM back in May this year , it was elective surgery. Mine was found accidentally due to pulsitis tinnitus in my right ear.
My arm and chest were significantly larger than the left Side and was having constant bleeds as it is high pressure avm I also have red markings on the skin surface as the avms are also part of my skin and was getting slower and slower physically.hope all is well with you after treatment
Thank you for this I still haven’t done anything but am hoping to one day
Have suffered from migraines since 5, my neurologist requested I do a mri with contrast and that’s who it was found