Hi I am a 26 year old male just sharing my story for anyone who may be looking for some positivity surrounding Cerebrum AVM hemorrhages.
My AVM hemorrhaged almost 13 years ago when I was 13. Me or my parents didnt know I even had a avm so it was all sudden and a rush as I lay unconscious .Unsure of the grade but doctors basically said that I was done and family were called to come and say they goodbyes. Thru angiograms my life was first saved by a form of basically glueing around the bleed . This did not last long as doctors were worred that they did not catch all of it and that there was a high chance it would hemmorage again and that id be not so lucky.
I later received open brain surgery over gammaknife as doctors were worried about the timeframe of gammatherapy.
I think it was the best thing that happener the problem was removed and after 3 months of rehab i returned to a somewhat normal life. Yes i had double vision and memory issues . Yes I acted like a child half my age at the time . But with time the healing got me to where i am today. So really this post is to give hope . I was on deaths door and in a Comma and now i sit today renewed and with a completely different perspective on life that i think i would have had. I wish any of you gettint treatment the best of luck and love.
Hey @Conors36
I just want to thank you for your story. The thing that moves me is that you joined here eight years ago, a very young man, and today you’ve told at least part of your story, for the first time. It means a lot to share your story. Thank you!
I hope you’re doing well.
How have the last nearly eight years been? Is there at least as much story to tell about those eight years as half a lifetime ago when you had your stroke and your operations? Have you spent all those years getting better?
I joined here an older man, quite frightened by the turn in the road that my life had taken and just over eight years ago, I had just one embolization which I was lucky to be enough to sort me out. It took me two years to feel better but I feel we have lived the last eight years in the same house somehow without meeting. It’s good to meet you.
Lots of love,
Richard
Hi buddy it happened just after I turned 13 I believe it was a hectic time. It was more a severe hemorrhage than a stroke and completely off gaurd I was sitting on my phone texting friends one minute and the next I was unconscious and in a coma. Once I woke up I don’t remember about a month or 2 as it was my front lobe and the damage was severe as it was a huge bleed. I got a total of 9 angiograms 2 embolizations straight away to try and stop the bleeding and 2 angiograms embolizations later to attempt to get the remaining 10% they did not get. I went to rehab for 3 months and later got called for open brain surgery. The hemorrhage was so big that it split a crevice in my brain this meant the surgeons could go up that crevice and remove nothing but the avm. Luckily I had the 2 top neurosurgeons between Ireland and the UK working on it. After the open brain surgery I was out of hospital after 2 weeks. I had double vision for maybe 2 months afterwards and it corrected itself. I had extremely bad short term memory . I took absent seizures for maybe 3 times over the space of 6 months. I then went clear of seizures for a year and got the all clear. I had to return for a few check ups for a few years and I’ve been all clear maybe 8 years now . Still don’t have the best of memory but physically and mentally clear other than that.
I hope this helps bring some kind of hope to others I know everyone’s case is different but this is coming from at the time a teenage boy that didn’t have a great chance to put it lightly.
It is a fantastic thing to know. And great that you’ve been well for these past eight years.
Welcome!
The other 5 angiograms were all check ups sorry I forgot to add that. To add also I got the angiograms from my thighs they are much more painful than open Brain surgery just to settle any nerves about recovery etc
I had three operations overall: a combined angiogram and embolization, then a couple of follow-up angiograms. I can honestly say I found these procedures to be perfectly gettable-through able, not very difficult at all and if someone told me tomorrow that I needed to go through the same three again, honestly I am sure I’d be ok with that. I think I worried mostly about the unknown.
There are obviously risks to all of these things that should worry us, make us careful what route to choose when given a choice but in terms of pain or discomfort, I got through perfectly well, so it might depend on some thing that I don’t understand as to why you had such a hard time with yours. Maybe I just had better drugs 
I wouldn’t have discribed them as painful just trying to help out as I agree angiograms were not sore just a little tender so if someone has had an angiogram before then in my experience the open brian surgery is even less painful !
@Conors36
Welcome to this unusual group, we’ve all experienced something we’d rather not of had. I was 19 when I had a rupture and spent longer in hospital than you but the main thing is that we’ve both been able to leave hospital.
My suggestion to you is that you get hard copies of your medical notes and scans in case you need them later in life.
Over 30 years later I have a hole in my brain which a neuro is saying is from my original bleed but I don’t remember seeing it on scans then and he can’t prove it was there in 1990.
Still i battle on…
Best
Tim
Yea I often thought about getting a hard copy but don’t know if they would still have my records as been 13 years now
You should be able to request a copy of anything that they do hold about you by enquiring at each hospital that has performed scans or operations for you. I’m pretty convinced that scans, reports etc are still hospital-centred, not national.
The way to find out how to do it is to find the relevant hospital’s website and read the Privacy Policy. Under the Data Protection Act 2018 (often referred to as GDPR but that is the name of the EU regulations that influenced the Act) you can submit a Data Subject Access Request to gain access to the information held by any organisation about you, the “data subject”.
You will need to prove who you are, so it is often an onerous process, because they are obliged to protect your information and only share it with you, not anyone else, but the Privacy Policy for each hospital should explain who or how to contact them to initiate that request. They are allowed to make a charge for requests.
I’m so happy you’ve made it and are better! God bless you with a long and healthy life. Love and prayers. My story is too long and I’m still living with an AVM.
Wow…that sounds so much like my story. Thanks you for sharing. I too had to go through GammaRay after a 12-hour brain surgery due to a hemorrhage (AVM explosion in my left brain) and it was very successful (that was 33 years ago). Hearing our stories of survival will give others hope because and AVM is not a death sentence!
Thank you for sharing your story. To this day, nearly 18 years after my first bleed, I can still talk to the paramedic who transported me to the hospital that day and he remembers me. I was the first unconscious student he had ever picked up from a school. When I was in ICU in CHEO in Ottawa, I was the “sickest” kid, being in a coma for 11 days. Other parents told my parents, “We thought our child was in bad shape, until we saw your daughter.” Now, I’m alive and well, a published author, and planning my September wedding.
So great to hear other success stories! Keep thriving!
-Julia