Hi. Firstly I’m so grateful to have found this fantastic site thank you. I was diagnosed last May with the above. I’m 47 and have no symptoms. I was terrified at first but now I’m feeling much more positive. I’ve just had an angiogram in London and praying they can get rid of it, although it is in an eloquent area. I wondered how anyone else with one in an eloquent area has dealt with theirs. Thank you.
Welcome to the site! It is great to have you with us and I think all of us who’ve discovered our AVM without it bleeding have gone through the OMG moment. It is quite a revelation.
Mine was giving me symptoms which were getting a bit worse over time, so I felt the need to do something about it but just because it is there doesn’t mean that fiddling with it is the right thing to do. You definitely need the opinion of your neurosurgeon and / or that of a neuro interventional radiologist as to what might be done and whether it is better / safer to do x or y or safer to leave it.
We have people in every condition here, so I’m sure some of us can help you along the way.
I understand (from Googling mostly) that incidence of AVMs is about 1 in 1000 or 1 in 2000 of the population but only about 14 people per million are discovered each year. So, the vast majority of AVMs that are unannounced or undetected stay that way and people live a full life without an AVM ever coming to the fore. However, as you know a brain AVM is potentially dangerous, so you need a medical opinion on your risk rather than just general statistics.
Discovery is a very scary time but I do think it all calms down as you get used to the idea. Time is a great healer of worry.
My AVM is in my dura mater, over my right occipital lobe and I had an embolisation in April just gone. I’m definitely better off than having left mine untreated, though I’m still having some effects from it and I’m going to see the doctor again in March to see if there is anything residual still to do.
Hope this helps. Welcome. Ask anything you like. And we’ll try to help you through the stages.
thank you for your quick reply and making me feel so welcome. I have wanted to join for several months but have only just started getting the strength to talk about it without breaking down. At first I wouldn’t accept it and just wanted to leave it but after braving the angiogram I know I now have the courage to get it removed if I can and I just want it out now!
Did your embolisation get rid of it? I think it has a higher risk than gamma knife doesn’t it?
I think it has noticeably reduced the symptoms, so I am very grateful for that. I started to feel I was getting less well again in the autumn and then I had a week or two of being more significantly dizzy which is why I’ve gone back to the doc.
I completely get the breakdown bit. It is quite a shock and I went through what I call my OMG period mostly in Sep 2016. There were a few stages along the way that I had difficulty with and I think it’s only reasonable to be so shocked. But, we’re all here. We’ve been through similar things. And there are good outcomes to be had.
I think I could have coped with embo or gamma. Craniotomy would be a big challenge for me. But embo was the recommendation and the degree of flow I could feel (literally) convinced me that mine needed embo rather than gamma knife. I am currently still hearing some blood flow at night and I’m almost at the point where I think I can feel some blood flow again on the outside of my head, so I am very borderline of the opinion that further work may be required.
I’d say gamma knife has some risks. I think it is difficult to balance GK v embolisation where risk is concerned. Each has their benefits and risks.
The only thing to do is to understand the options for you, the benefits of whatever recommendation your doctor is making, and to be convinced yourself of the need to face whatever surgical risk to try to realise a reduced ongoing stroke risk.
I hope you don’t have to wait too long. The waiting game is part of the stress, I think, and is great if you are lucky enough to avoid a big wait. My story here.
I’m so sad to hear what an awful time you have had, it’s sounds terrifying especially thinking your life could be over. You are very brave to have got through it.
I have been reading a book called The Secret’ by Rhonda Byrne. This has given me the strength to focus on the positive and that if you believe and can imagine that everything will be OK then it will be. It has lots of quotes from famous people who’ve overcome serious illnesses through the power of positive thoughts. This may help.
Ps thank you for all your valuable views and advice.
I agree completely, positive thinking is important.
Time for me to shut up and let other good folk with an actual parietal lobe AVM help you out!
Hi Gill welcome! Mine is on the left side in an eloquent area. I’ve had 3 embolizations and a cancelled craniotomy. I will have an MRI in April to see if it has changed since embolizations.
Thanks for your reply. Did the doctors recommend that then and did you know it would take 3 times? how come the surgery was cancelled? what risks were involved please? would they not do gamma knife? Sorry lots of questions!
Originally they said it was too large to do gamma knife that they would have to split it into sections and that it would take 3 yrs to know if it worked. So next he decided to do 2 embolizations then it turned into 3 with the last one affecting my speech which has mostly come back. Then the day of my craniotmy he told me he didn’t want to do it because it’s in the eloquent part of my brain which would leave me with severe weakness on my right side which may or may not come back and could cause speech issues. I am scheduled for an MRI to monitor in April I don’t know what will happen.
Hi Kell oh no you poor thing you must have been terrified through all this. I really hope it will be finally gone soon for you. Luckily mine is only small but it’s good to know they still tried something to help you in an eloquent area.
Sorry to hear that you are going through this.
I just spotted your question and had to connect. My six year old daughter was diagnosed last week with an unruptured AVM in exactly the same place as yours! To say it was a shock was an understatement! She had been suffering with ‘migraines’ about once a month since August, accompanied by vomiting and a weak left arm. She was sent for an MRI and they discovered the AVM! We have been scheduled an appointment next week at Great Ormond Street to see a neurosurgeon. We haven’t been told the size or anything yet so do not know if it’s treatable yet. I am assuming they will want to do an angio next to work all that out!
I have been trying to do research and haven’t been able to find anyone’s case that has it in the exact same place until now! I know even if it is in the same place it can still be different (size, blood flow etc.) but I just thought maybe there maybe somethings that’s are common to both our cases!
I am still going through the OMG stage and have waves of emotion of feeling hopeful and then so scared. My daughter has her whole life ahead of her and the thought of this effecting her for the rest of her life is terrifying! My fear is them telling us that there is nothing they can do and that it needs to be medically managed! I just want it gone!
Did you have symptoms before yours was discovered? Let me know if you want to chat further!
All the best
Your message has made me cry, I’m so sorry for you, it is so sad about your little girl, you must be in pieces. The first few months are the worst, trying to come to terms with it. Panicking about what to do and what it is and Feeling Heartbroken for her. After a lot of research, meditation, positive thinking and talking to family and friends I have slowly come to terms with it. I feel positive they can get rid of it eventually and thinkgs will be OK I just have to be brave and do what the doctors recommend . The doctors are amazing now in what they can do. I find out next Wednesday what they will decide for me and I’m praying it will be something, I will let you know what they say.
I’m so lucky I only had bad migraines which came and went over the last 20 years and this Was found by accident after migraine of aura when my right side went numb but can’t be linked to my avm which is on the right side! I’m also so grateful that I have reached 47 and it has never ruptured and often they never do. I travelled the world on planes, partied hard, cut my head badly and done weight training and lived a full normal life with no problems which I know your little girl will do too. You can beat this if you believe it and have faith. Ps I have a 4 year old boy so I really feel for you.X
Hi Gill. Can I ask what an ‘eloquent area’ is please? I haven’t heard this expression before. I have an AVM of the Cerebellum. Treatment would be at least 3 embolisations and gamma knife, all the risks associated. I have always felt it too much for me so have resisted treatment although to be AVM-free would of course be great.
I’ve heard it used when giving a scale to AVM operation risk, e.g. in the Spetzler-Martin grading system. The impression I get is that it is to do with motor function and speech. There are a couple of entries on the WWW. This one looks to be reliable, though not exhaustive:
Hope this helps,
Hey there. My son has an AVM in his thalamus which is also considered an eloquent part of the brain. He is currently in the process of receiving CyberKnife radiation treatment at Stanford University. He goes for his second round of treatment next month. It was a crazy hard decision. At the time, he had not had a rupture and had no symptoms, other than headaches. But we could not imagine living with the fear of the unknown so we continued searching for someone that felt they could treat him. Shockingly, he had a rupture 7 weeks ago. He was in the hospital for 9 days. But he is ok and we are proceeding with the last CyberKnife treatment. Definitely something to look into. Best of luck to you!!
Yes Richards right it also means it’s deep within the brain in a dangerous part and to get to it means going through a lot of the brain.
Ps Lulu when we’re you diagnosed?
I’m so sorry to hear about your son. We’re you told by someone that they wouldn’t do it then? How long ago did he have the first cyberknife treatment?
It all seems such a gamble, all of us here with an avm are having to take such risks it’s such a nightmare. I hope your son finally gets free from his avm soon.