Hello, I have recently been diagnosed with a Grade 1 frontal lobe AVM, located by the skull of my right temple. I have no symptoms, other than occasional bad headaches/migraines on that temple, although I do sometimes get similar headaches on the other side of my head so not sure if this is actually related. I also have a small hard lump on this temple which I presume to be part of the AVM.
Due to my young age, I was advised by the neurosurgeon that my AVM has a high risk of rupture in my lifetime based on a formula they use to calculate risk. I have been given some time to make a decision on treatment options and I discovered this forum during my subsequent research on AVMs.
I am finding a lot of conflicting information online and I have some questions so I would be very grateful if anyone has experiences/information they can share that could help answer some of them.
I was told by the neurosurgeon that the risk of rupture is 2-4% per year, and that this is cumulative. Online I have read that risk increases with age due to weakening of blood vessel walls, but I have also read that AVMs stabilise after a certain age and ruptures are more likely to happen earlier in life. Is it true that risk is linear over time or is it more complicated than this?
Is it likely that the AVM would grow over time? I’m nearing my mid-20s so I believe my brain is nearly fully developed - does this mean my AVM would be at its full size already?
I was told I can go on as normal with regards to things like exercise, driving, and flying. But I have read that some people avoid things like flying and heavy exercise, and even rollercoasters and saunas. Is there anything I should be avoiding really or nothing will make a difference?
How likely is it that an AVM could develop an aneurysm? How would this increase the risk of bleed? I only had an MRI so I don’t know if that’s detailed enough for them to see aneurysms but they didn’t mention anything about that.
What could be the implications of a rupture in the right frontal lobe, since it’s next to my skull not deep in the brain?
Although it’s in my right frontal lobe which is considered to be a non-eloquent area of the brain, as this part of the brain affects emotions I’m wondering if having an AVM here could actually be causing some symptoms. I’m a long-term sufferer of depression so since the AVM is essentially just taking up space in this area/putting pressure on brain tissue there, it could be affecting my mood? I can’t find any research about this online though.
Welcome to our group. We are one of those groups that tell people we are happy you found us but too bad you had a reason to look!. You ask quite a few questions, and we share many similarities but we are all different. I was 48 when my AVM ruptured, and I had no idea until that point in time that I had one. Mine was a Grade II in the left temporal, I in size but the location in the inner side of the lobe made it a II. I has three options, 1). Do nothing 2) Gamma Knife and 3) Craniotomy.
Option 1 was not even considered as viable for me, I did not wish to experience another bleed. I went through all the scans possible in reaching the decision of Gamma Knife and that was based on my asking the Neurosurgeon what he would do. The location elevated the risk for craniotomy. The risk of bleed during the “lag” period from treatment was less than the risk to access during craniotomy. I had the bleed in May of 2016 and GK in November of 2016.
I started exercising after my bleed but incrementally based on my neuros approval and was likely about 6 motnhs post bleed when I was told to d0 whatever I wanted exercise wise. In respect to flying, a pressurized cabin has the same pressure as the City of Denver, or so I am told. Unless the cabin depressurizes there is little risk. I was told to not sky dive…I was okay with cabin pressure and had no problem not jumping out of a perfectly good airplane!
I think I answered a couple of your questions from my experience, but many you pose should probably be directed to someone in the medical field. I hope I was a little help. Take Care, John.
Hello, reading your well put together post I was motivated to try and help but I am not sure exactly how to. My initial thought is I would encourage you to read as many posts from other members, reading their stories might help you to gain perspective and knowledge.
My story is I was likely born with AVM (brain stem, inoperable, no good treatment options ) and it started acting up in my mid 20’s. I had children by then and no problems during pregnancy (I am now 54 and have 4 grown kids). I was always very active, loved weight training in my early 20’s and remain active today. I started having hearing and vision issues during my late 20’s and 30’s but back in the day they couldn’t figure out what was wrong and things would ultimately right themselves. I was healthy most of the time, but every once in a while I would have some strange unexplained medical issue that I now know is due to my brain stem AVM.
Fast forward to 3 years ago I lost hearing completely on one side and a cranial angiogram confirmed my nest. I carried on living my best life, and 8 month ago I had an event resulting in temporary loss of vision and ability to walk. I was in hospital for 10 days and fast forward to now I have regained 95+% of my balance and vision without intervention. I have not been given any restrictions on fitness or flying besides maybe no powerlifting and avoid scuba diving. Since my hospital stay in June I have flown and about to fly again on Sunday. I have also just booked a 10 day hike through the Alps Mont Blanc and this summer I headed into the Rockies for some back country hiking, neurosurgeon approved!
I have worked hard on finding peace in my situation and use my medical woes to inspired me to live my best life. But there are days where it’s hard, when my vision or balance a little off and I get scared. But I hold on to the knowledge that I have lived so many more days trouble free and just a few days whereby my AVM took me down - I am hopeful for a good future.
I will say for me, I feel strongly that dehydration is bad for me. I can look back on my more significant events and dehydration was likely a contributing factor. I now work very hard at staying hydrated.
I wish you the very best as you seek answers.
I’m with John that these questions are best answered by the professionals and with Lisa that reading round here will give you a similar feeling of what appears to be the norm, just based on the number of people sharing their own experience. My feeling, based on those is…
I think it’s more complex. It might not be a straight line at all but how to express that? For some people at least, if an AVM isn’t closed off 100% it seems to regrow or recruit more blood vessels. The weakening of the vein walls over time makes sense to me and after all, an AVM is high pressure blood flowing into a low pressure vessel.
I felt my AVM was developing quite quickly over time. Like John I discovered mine in my 50s. It was playing into vessels that pass by the ear, so I could hear the whoosh-whoosh of the erroneous flow, getting louder week by week. While waiting for treatment, I was advised to cut out anything that spikes your blood pressure, so things like smoking, caffeine, alcohol, lifting heavy weights/straining of any kind. It seemed like a miracle cure for my symptoms for about a month then the development of mine just overtook the benefits. I’m sure mine was aggressively changing – I’m not sure anyone else here has reported such rapid change.
Don’t know. The main risk with an AVM is that you’ve high pressure blood from the artery going into a low pressure vessel (the veins) without the usual slowing down mechanism that is a capillary bed. I believe aneurysms are sometimes associated with an AVM but the (bigger?) bother is that the vein bags out and eventually ruptures because it isn’t built like an artery. How long that takes is the big question.
Do ask any other questions you like. We have all been in a similar situation to you and it is a strange, sudden, scary turn that the road has taken so the thing we can do is talk to you about your worries.
Hi Koala,
I feel for you, my daughter found a similar situation 2 years ago. the Dr then said its just a little something dont worry about it, but check it each year. After a year she checked and the next neurologist said this is an AVM you need a specialist. From my research, I am coming to the conclusion that for a grade 1 like you describe, probably the best is to have Gama Knife, take care of it. They tell me it has a 80% success, and maybe better for your type, like in the 90% chance of success. But what you must do is find one of the best Dr in the world for this situation and talk with him or her. Many seem to do video consultation if you send your MRI and other stuff if you are far away. In the states I found they are in NYC, Pittsburg, Minneapolis and Im sure some other locations.
Here are 2 videos that i found helped alot from some leading Neurologist that focus on AVM.
I had my AVM removed from my right frontal lobe after suffering a bleed one month after diagnosis in late 2010.
I was told back then it was a 1-2% chance of a bleed, which increases each year & as I was at the age of 31 they believed removal via craniotomy was best!
I went ahead with removal & am here to share my story… I believe technology has advanced so much since my diagnosis & confident they can definitely help you!
As you can appreciate there are many questions that we can’t really answer as we are all different as humans in these circumstances & only the medical experts can give you definitive answers.
Please know that there is light at the end of the tunnel & being aware of it did save my life as I was well aware what was happening to me when I suffered my bleed.
My advice would be to live life, be positive but also be smart… at some stage you may need to consider how you address this AVM & move on in life without that in the back of your mind… I was told my age played a big factor in my recovery as I was young & strong!
I had experienced depression & anxiety for many years prior to my diagnosis & also wonder if the AVM played a part in that… please keep us posted… God bless!
Thank you everyone for your comments. My initial appointment after diagnosis was relatively brief and mainly just discussed what an AVM actually is and what treatment options are generally available. I thought of a lot of these questions afterwards and have written them down to ask at my next appointment, which will be in around a year’s time since the yearly risk is low. I appreciate everyone’s perspectives and sharing their experiences. I’m leaning towards surgical resection but will definitely seek a second opinion before coming to a decision. Wishing everyone the best
) and it started acting up in my mid 20’s. I had children by then and no problems during pregnancy (I am now 54 and have 4 grown kids). I was always very active, loved weight training in my early 20’s and remain active today. I started having hearing and vision issues during my late 20’s and 30’s but back in the day they couldn’t figure out what was wrong and things would ultimately right themselves. I was healthy most of the time, but every once in a while I would have some strange unexplained medical issue that I now know is due to my brain stem AVM.