A note of thanks…
Firstly, thank you for creating this community and allowing me to be part of it. Since learning I have an AVM, I’ve been feeling particularly overwhelmed and anxious, and this forum has provided me with a sense of comfort in understanding I am not alone in this journey, and a wealth of knowledge drawn from all your experiences and advice
My story…
I’m a 34-year-old who has been recently diagnosed with a grade 1 AVM in the right frontal lobe of my brain. The AVM is unruptured and was discovered by coincidence in a scan.
I have since been advised I should undergo treatment, either Gamma knife or surgery, and deciding on the right form of treatment for an unruptured AVM seems rather daunting!
Food for thought…
I would greatly appreciate learning of others’ experiences and advice. I’ve attempted to summarise my thoughts (of which there are many at this time!), into two main questions:
Has anyone else experienced symptoms even though their AVM is unruptured? e.g., headaches, pressure and pulsation in the head, internal tremor
I am yet to decide which form of treatment to undergo. I am aware that both Gama knife treatment and surgery carry risks:
(a) Gama knife: What made you decide to undergo gamma knife treatment rather than surgery? How has your experience been? Any side effects after undergoing treatment (not linked to a prior bleed)? How long has it taken for you to recover fully?
(b) Surgery: What made you decide to undergo surgery? How has your experience been? Any side effects after undergoing treatment (not linked to a prior bleed)? How long has it taken for you to recover fully?
Thanks for reading, and I look forward to hearing from you!
Olive
I never knew mine existed, even after multiple ruptures which I brushed off as typical migraines. At the age of 39 I suffered a severe hemorrhage - there were signs leading up to the rupture in the prior months, which again I just brushed off as random symptoms of work, etc.
If I found out that it existed prior to any symptoms arising, I have no clue how I would treat the situation at all.
There are quite few members on this board that will surely give you some helpful input. But, making “the decision” in my opinion is very difficult. It’s very hard for me to say that I am glad I had a severe hemorrhage, but it turned out to be what I needed.
Nothing around “our” condition is an exact science - But, from personal experience - we are in best of time with amazing life saving procedures & neurosurgeons.
Welcome Olive. I discovered that I had an AVM in 2016 when it decided to show itself via bleed. It did stop, which is good, but I did spend 5 days in the hospital and then sent home to recover with a course of steroids. It took some time to recover and I did have some deficits. I won’t get into my hospital stay but I had a bunch of scans, there was talk f requiring a shunt, and at one point fear that bleeding had started again. It all worked out.
My AVM was Grade 2, left temporal. It was a 1 by size but located on the inside of the lobe, which made it a little more difficult. Over the next several months I had another angio and was faced with two options, craniotomy or gamma knife. Gamma knife was the least risky in producing deficits, but gamma knife presented risk of further bleed during the lag time. On decision day I looked directly at my neurosurgeon and asked, “If it was you, what would you do?” He replied that if it was hime, he would go with gamma knife given all that he knows. It made my decision easier, and knowing that if it bleed again he would be going in to get it.
Had it been easier for him to access, my decision may have been different. His words of having to mash through a fair bit of brain to get at it certainly did not sound great to me! Hindsight being 20/20, and with gamma knife successful, it was the right decision. It took over two year to be obliterated, and know the decision was correct. At the time, I was completely at peace with what I had decided, but had no idea if it was the right one or not.
We are all different, but have a lot in common. My advice is to as a lot of questions? I have no further deficits due to gamma, but a couple as a result of the bleed. That presented the fear of gamma and potential second bleed and caused my decision to be quite difficult.
Hi @Olive and welcome! I can imagine you’re probably inundated with lots of questions and probably some horror stories. Let me first day, every situation is different. There are different grades (severity), risks (how likely it will rupture), and sources of treatment. For all that certainly talk to your treatment team of doctors. Second, for those in this group such as myself who have lived through 4 ruptures, I will tell you each one was different. My first AVM ruptured in 2000, out of the blue while watching a movie in my girlfriend’s dorm at Auburn University. I woke up from a coma a month later with tubes running in and out of me, unable to walk, and unable to move any of my left side. Welcome to the world of AVM. Now this is my story, everyone else’s is different. After a second bleed that summer, I rehabbed, learned to walk again, and eventually went back to work full time. Then 2009 happened. The doctors scanned my head annually after the first two bleeds. They saw another lesion. So I scheduled to have that one zapped by gamma knife. Again, before the doctors could schedule me for surgery I had a third bleed. After that one I also lost further partial vision out of right eye. Rehabbed again, got back up to driving again, and went back to working full time again. Fast forward now to 2018. My wife and I and our children are doing well when suddenly after making a quick trip to the grocery store for something we forgot to get, my vision becomes tremendously narrow, like looking through a paper towel roll. I managed to make it home but after consulting with my neurodoctor, he explains I had had a stroke. My vision have never returned. I was 38 at the time. I’ve had a craniotomy, gamma knife three times, shunt installed, shunt revision, lost my gallbladder, appendix, and part of my small intestine. All of this could possibly have been avoided if I had known what I needed to do and what I needed to ask. So here’s what I would non-medically but strongly suggest as someone who has been through four bleeds.
You are your best advocate. Ask questions, ask them to explain it in your language not theirs.
Don’t wait. I waited in 2010, it bled. I waited in 2018 it bled. Don’t wait.
Don’t worry. You have made the exceptional and awesome find of finding this group! Hang in there and know there are many who believe that you didn’t just happen upon this group but you were directed for a greater purpose.
And an addendum, I wanna recommend two resources that helped me. Find you state Brain Aneurysm Foundation (www.bafound.org).
Second, I wrote a book entitled “Malformation: when bad things happen to the right kind of people” which you can find on Apple, Android, Kindle, paperback or hardback. That is a collection of my story and every possible resource I could find and have found with 22 years of living with an AVM.
I had gamma knife back in September 2021 due to location in the right thalamus. Prior I was diagnosed with an AVM back in march 2021 due to double vision. I knew something was wrong before for about 6 months with chronic migraines and when people talked it felt like inside of my head was shaking. When I was diagnosed last year I was told had a bruise in the right thalamus were the AVM is.
Since gamma knife my headaches have improved alot each month and getting better, back to working full time. I still get tired and the head whoosing feeling and tinnitus but don’t have chronic headaches and migraines like before.
Welcome. I’ll be brief Borderline large in right parietal that was “operable, on the motor cortex and I could wake up with left side motor issues. I was a very active 58 who reffed High school basketball, umpired all kinds a of ball and worked out at the gym at least twice weekly. I was at the gym when it began “leaking” according ER doc. I was airlifted to a hospital capable of handing me. The AVM was respected in emergency, circling-the-drain surgery.
Nine years later I have a pretty useless left arm, some help in my left leg. I will live in a wheelchair for the duration. My wife and I have a deep faith in Jesus Christ and he has given us the strength to maintain.Knowing what I do now, I would have had surgery to remove it. I would have likely overcome the deficits, but I am alive and able to enjoy my grands and wife of 40 years.
Thank you all for taking the time to respond to my post, I really appreciate you sharing your individual journeys with me. I realize everyone’s circumstances vary and that this is not an easy journey to be on, nevertheless I must say I felt a sense of strength and optimism shine through when reading each of your posts, and I am grateful for your advice.
I aim to remain active on this forum to continue sharing my journey and hopefully help others, like you have all helped me!
I found this place a great place to be when I discovered my AVM. Often supportive, often enough a bit frightening but a good place to come and say “Errrrrr this is happening…!”
As you say, we are all different, especially with brain AVMs, as depending on the impact your AVM is having on the very specific part of your brain will determine the very specific effects it has. For the record, mine was at the back of my head and pumping blood past my ears to the extent that I self-diagnosed, courtesy of Dr Google because I could hear it.
My AVM was a dural arteriovenous fistula (and likely quite different from yours) but it was developing quite quickly over time: my symptoms changing month by month. Since you’ve discovered yours incidentally, it seems less likely to develop quickly.
Do you have symptoms from it? Sometimes you’ve had symptoms for a long time, just no reason given for them or you’ve just taken them as “normal”. Other times, an AVM has been there quietly not doing very much and perhaps might stay there without doing anything your whole life.
I have a right temporal lobe AVM. I am told it was about the size of a golf ball. It has never bled but I experienced seizures, headaches, pressure and pulsation linked to the AVM. I had Gamma knife radiosurgery because the size and position of the AVM ruled out surgery. I did not have any side effects from the radiosurgery and within 4 months I noticed that the headaches, pressure and pulsation had gone. The radiosurgery shrank the AVM significantly but did not obliterate it so I had more Gamma knife treatment 2 and a half years ago - which again occurred without side effects. I am currently waiting for an MRI to assess the outcome of the second radiosurgery. The only side effect immediately following radiosurgery I experienced was being exhausted for a few days, after which I carried on as normal.
I found being diagnosed with an AVM scary and it felt like stepping into the unknown, but I soon realised that for the consultants it was not an unknown and I relied on their vast experience when making my decisions.
But it seems there was nothing you could have done to prevent the first or the second hemorrhage.
From what I understand the craniotomy was done way way later?
Dear Olive, though I am have enjoyed more than twice as many days on the planet as you have, I know that you will make the right choice for you!
I had an AVM burst on my spinal cord ten years ago and it was successfully repaired. I never give it a thought. Even the scar was nicely done !
I have an aneurysm in my brain,found during that time, and I just have it monitored annually. Try to get all the information you can from trusted professionals, and know that these doctors have amazing skills. Go about I’m your life and enjoy every minute. You are in good hands!
Hi @rafarataneneces. I’m no doctor and certainly don’t want to influence you one way or another. I share what was done to me based on both my parents decision in 2000 when I was a minor, then my wife and I’s decision in 2010. Then again my wife and I’s decision in 2019. We made those decisions with as much guidance and understanding as possible so far as we could understand. To be honest if I had it to do it all over again, the only thing I’d do differently would be to insist getting scanned more frequently thereby preventing one or more of the bleeds. But that was my case. For anyone with a brain injury, I definitely defer treatment and recommendation to your treatment team and the patient. I’m no doctor and certainly don’t want to steer you one way or another. Now 22+ years after first bleed, I offer the book I wrote, “Malformation: when bad things happen to the right kind of people” because it had a number of tips and pointers I wish someone had told me 20+ years ago that could have possibly saved my appendix, a couple of brain surgeries, and possibly a good chunk of my visual field.
Thank you @DickD , @Dill & @HappyMe for responding to my post and for sharing your journeys and advice
I started experiencing symptoms for the first time recently after getting Covid. My symptoms include pressure throughout the head, a throbbing pulsation (both felt and heard), and an internal tremor in the head.
I’m curious whether anyone else has had similar symptoms that appeared suddenly (and are not linked to a bleed)? And whether it was confirmed these symptoms were in fact linked / caused by the AVM?
I discovered my DAVF because I could hear it. Initially it was very quiet and I could only hear what was something like a heartbeat. This was Sep or Oct 2015. By the new year, it was louder and I started googling but didn’t find anything worth going to the doctor’s for. Then by Easter 2016 it was definitely louder and I did a bit more concerted googling, to reveal something called “pulsatile tinnitus” and AVMs and in particular dural arteriovenous fistulae and stroke . I made an appointment to see my GP immediately.
My pulsatile tinnitus grew in noise over time. By July, I had managed to record it by pressing the microphone of my mobile phone to the spot where it was on the back of my head, so I knew it wasn’t just me imagining noises. By the autumn / winter 2016 it was like the washing machine pumping water out, once a second, 24 hours a day! As I say, mine was developing quite quickly.
I could hear it because the DAVF was squirting blood into my right transverse sinus, which is a horizontal vein across the middle of the back of your head. The right and left are connected and normally flow blood back to the heart through the sigmoid sinuses, which run past each ear. The noise of the turbulent flow of the arterial pressure blood through the sigmoid sinuses was what I could hear.
I discovered today that pulsatile tinnitus can be caused by a number of things – the other major cause would appear to be atherosclerosis, the narrowing of an artery, which again creates a turbulent flow which when heard is pulsatile tinnitus. To my untutored mind, a frontal AVM is a long way away from the sinuses that affected my hearing, though if it is squirting into your sigmoid sinus (centrally over the top of your head) then it would pass into your TVSs and to the sigmoid sinuses again. In my book, it is a symptom worthy of investigation, though I know at least a handful of people here with PT who’ve not found a cause.
Certainly most people do not have pulsatile tinnitus who have a brain AVM. I’m sure there is a disruptive flow going on in all AVMs but only if it plays past your ears somewhere will you actually hear it.
I’d describe pulsatile tinnitus as like a single “whoosh” noise, once a second, in time with your heartbeat. It isn’t a thump-thump like a normal heartbeat. Not for me, anyway.
Hi, I’m going to vigorously subscribe to random’s 2d point about asking questions. I’m in a conundrum re that right now. Lousy/non-existent communication w/ my neurologist when I want to get questions answered, esp. re CGB/THC stuff. He won’t even talk about it.
I had an awful experience w/ Kepra and lost years of my life (memory) to phenobarbitol and other strong meds.
As far as your present situation, I can offer support but not much in the way of advice/knowledge. It seems like you’re smarter than me anyhow. So hang in there and try your best to appreciate all you do have. Greg
I messed up, it was Random’s 1st point that related to asking questions and getting answers.
Olive, I was wondering the same thing. Does Covid effect/exacerbate symptoms (in my case seizures)? I doubt we’ll have any hard data on Covid for a long time but I’m curious re anecdotal evidence from you and others.
Greg
I wrote MY specifics but in no way do I offer medical advice because I’m not trained in that field. I recommend you talk to your doctors and follow their recommendations. The book is meant as a primer for those of us who had this unfortunate malady thrust upon us. I hope that makes sense.
My name is Francisco, 44 years young and was incidentally diagnosed with an un ruptured grade 2 AVM in my Cerebellum right side. This amazing site and community rallied around me almost a month a go, and this is my first post since treatment. I will attempt to answer by my experience:
No symptoms, found it on a check up that included MRI
Live in Guatemala so I had to make travel arrangements to seek more information and treatment
On June the 1st my wife and I went in to see Dr Marc Bain and Cleveland Clinic, Ohio. He confirmed de AVM and suggested an angiogram and new MRI. He suspected Craniotomy or Gamma Knife as way of treatment. He advised that avm’s on the lower part or back part of brain carry some more risk.
On June 6th I had angiogram and size, sources and 3 aneurysms where located within the AVM. Surgery was set up in event that was a route for next day.
On June 7th I had de craniotomy (6hrs), and according to Dr Bain and a second angiogram everything went according to plan, resection completed.
Stayed at Hospital till Friday, and moved into a Hotel that same day, by the Clinic.
To start I feel grateful, very grateful to be able to tell this story, I was advice that craniotomy was my best option considering location, time and aneurysms.
Of course recovery is was it is, I can talk, think, see, walk, with walker now but getting better I hope. I still have 4-6 weeks, or more of recovery and patience.
I want to thank this wonderful community, and hope to be able to be a part and help a long the way.
I currently have a 13-year-old brother that is in a medical coma because he had a severe rupture from AVM and my family is very worried. When I read your story it gave me hope because he is going through something similar to your first rupture and you were able to still have your life.
Anyway, I wanted to ask you about your long-term effects after your first rupture (if you had any), and did you notice a difference in your personality?
I know everyone is different but yours sounds very similar.
didn’t want go so craniotomy and opted for shunt and GK instead.
. I made an appointment to see my GP immediately.