Hi I’m new here. I was diagnosed with and AVM in November of 2020. Never had a symptom only was found because I had ringing in my left ear . Went to an ear Dr who suggested an MRI. The ringing had nothing to do with the AVM. I just had an angiogram last week . Feb 18 2021 and it had never bled im 50 years old I work out every day I have 3 kids. The Dr mentioned doing embolization and radiation. Any thoughts on this, I’m waiting to hear back from him in the next week or so. The AVM is small from what the MRI said. I’m very scared and have so much aniexty because of this. I never thought I had anything like this. IV had headaches here and there nothing bad but no other symptoms ever. Any feedback would be appreciated.
Welcome Chloe, I hope we’re able to give you some support and advice here. We have a lot of varied experiences, but the key is always to rely on your trusted doctors. I fund out about my AVM when iI had a bleed on May 2016. I had no symptoms prior and it seemed to come out of nowhere. I has gamma knife in November 2016 and it was successful as confirmed by angiogram in February 2019.
We are all very different, and in respect to exercising, that is a conversation you should have with your neuro. Post bleed I was allowed to walk only, nothing more strenuous. About 6 weeks into recovery i was allowed easy jogging and light weights. About 6 weeks after that it was relaxed more, cardio to whatever extent I wanted, weights but stay clear of really heavy with intense straining.
It was a progression for me, and I think it would be individual based on each of our specifics. A long way to say you should probably have a good conversation with your Dr. Take Care and once again welcome, John
Hi when you had a bleed what was your symptoms. I’m so afraid to do anything right now the aniexty from this is crazy. I’m waiting for my DR to call me this week.
Also did you have any side effects from the Gamma Knife and did they do an embolization first.
Thank you for your help I appreciate it .
Hi @Chloe ! I’m Paul, 39, husband, father, and brain aneurysm survivor. I won’t presume to be medically knowledgeable as that’s why the docs get paid the big bucks! But I have had my life basically dictated to me against my will. I had a cranial AVM bleed in 2000 (when I was 18), 2010 (when I was working full time and going to school), and 2020 when I was moved to disability because I simply can’t work any longer. I surrendered my license in 2018 because I lost vision (which I’ve lost more since) from a stroke in 2019. I’ve lost my vision in recent years because of lasting decay from my earlier bleeds. And forget life insurance because unless you had a prior policy they won’t touch you although Mutual of Omaha has a final expenses plan. I had no side effects from the gamma knife and I’ve had that treatment 3 times now. I do know that it’s not immediate so you have to “watch” the AVM which can be scary in its own right cause I have to watch and wait. Glad to see you’re here! Blessings as you continue!
Thank you so much for your response. I’m so sorry you have been through all of that. I have 3 children all teenagers and a husband and a great life and I’m so afraid now of this thing I just found out about. I was just living life. Waiting for the dr to call but thank you again lol. Glad to have a place to vent .
Hi, welcome to the board - just like everyone else, not exactly by choice
I had a brain bleed last year & never officially knew I had a AVM(actually it’s a dAVF) - I was 39 when the bleed happened(but, I’ve had previous bleeds that I had no idea occurred)
What was the ringing in your ear from?
Are you experiencing any symptoms, at all? i.e. Heart beat in ear, vision changes, pains, numbness
How is your blood pressure?
What is the location of your AVM?
These are the questions you will need to know answers to, before you make any decisions - and more
But, try your best to relax - I know, it’s much easier typed than done. . . . I wouldn’t be as worried as some think(this is just my opinion, I’m no medical professional). I’ve had a lot of contact with my neurological team & other people in the field - in a lot of cases, AVM’s lie dormant and for a long time. But, there are key symptoms I think you should look for. . . . I had so many leading up to the bleed last year, but I ignored them all - they seemed quite subtle - but, they were all there. Me & the neuro team had a bit of laugh about it - how did you not know.
Almost forgot to add - - - - Since my case was so severe, GK did not apply to me at all < I asked my neuro about it. It was either embolization, or craniotomy - my dAVF is close to inoperable due to it’s location, here’s the full name from the medical notes - Left sigmoid jugular dural arteriovenous fistula
My bleed “notification” arrived as an extreme headache, started to have memory issues and then didn’t recognize people I knew well. I didn’t have embolization first, and really no side effects from gamma knife. My side effects were from the bleed, slowly subsided to where I am now, no set backs by gamma. A little ore time to recall things and some more time to put thoughts to words, its all there, just slower. Most wouldn’t notice except for me, I do. I hope this helps, the hardest part of the gamma knife was the waiting. Take Care, John.
Hi I have had no symptoms I have had headaches all my life on and off but nothing bad . And my whole family had headaches. My blood pressure is actually low I work out everyday . No vision changes excel for getting older and needing glasses. The ringing in my ear my neurologist said has nothing to do with the AVM.
The DR office called today I have my follow up appointment in March 10 th I did ask if I can still go to the gym and they will get back to me tomorrow. Asking the DR. I even ran the Spartan 2 years ago 2 hours of climbing and running . So I pray I’m ok and this can be taken care of and I can live my life without worry like I did 4 month ago .
I can def relate, everything changed in an instant - I’m glad mine blew actually. I doubt that I could have grasped the need of having brain surgery prior to what happened to me.
Do you still have the ringing in your ear?
Is it on the same side as the AVM?
I still have the ringing but not as bad but I look at it like this. If I didn’t have that ring I would have never known so somehow as looking out for me. And it’s bot my AVM is on the right ringing is on the left. And as far as I know the mri showed it had never bled either so I think that’s a good thing I hope .
I wish u luck. . . I can definitely see how you’re seeing it this way - An unrelated event pointed you in the right direction.
Get more info on what’s going on - this isn’t something you want to just jump into. The surgeon alone can make a world of a difference.
I wish I had something else to add, but I don’t - all of this is such a tough pill to swallow. And, how we deal with it is our choice to a point.
Nothing but my best wishes to you, lady - I’ve already gone through this(and, still am) - I can’t think of a person I’d wish any of this upon.
Thank you and yes I’m meet with my DR soon and we will discuss all options. And he is one of the best where I live . Good luck to you also
Welcome! Like you, I discovered my AVM aged about 50 in 2016. My initial symptoms were a whooshing sound in my ear: in time with my pulse but sounding like a whoosh rather than a thump-thump of a normal heartbeat. This whoosh is called pulsatile tinnitus and if it can be heard by a doctor on a stethoscope, it is called an auscultatable bruit. Mine was a dural arteriovenous fistula, like Mike’s, and was a bit further north than Mike’s, about the middle of the back of my head, little bit to the right. Like you, I’ve had headaches over a long time but if I reflect on those now, I’m not sure they were related to the DAVF.
In terms of my treatment, it took quite some time to get checked out, so having done my own self-diagnosis courtesy of Dr Google in April 16, I saw an ENT consultant in August, MRI in Sep, referred to neurosurgery in Oct, met an interventional radiologist in Nov and then had to wait round to the following April to get to the front of the free health UK NHS queue for my embolization operation.
Since you are aged about 50, I think there’s a chance that your AVM is determined to be a DAVF (I understand these are relatively late detected or may be acquired rather than something you’ve had from birth: regular AVMs are more likely congenital, so something you’ve had from birth). If so, the assessment of a DAVF is different from that of a regular AVM and it is possible that the docs decide there’s no real danger and it can be left or kept an eye on. You’ll need to get your neurosurgeon to tell you what he or she can see on the angiogram.
Mine never bled. I do think it was busy developing and the whoosh got louder and louder and the other effects it gave me (dizziness, principally) got more acute over the months that I was waiting. I continued to talk to my doctor – the neurosurgery specialist nurses or my primary – to make sure they assessed any changes in how I was feeling. I worried my way through about July to April as I found out about my diagnosis and got steadily less well but I feel that being here, talking with people about it and getting a bit more accustomed to the idea that life has taken a very strange turn were really helpful.
In terms of what does it feel like if you have a bleed, I’ve not had one but from reading what others have been through here, I’d say worst end of the scale is a massive headache like you’ve never considered before. A stiff neck can augur something going on; or any of the other signs of stroke, so a palsy on the face, slurred speech, the loss of control on one side, confusion etc. I found that telling the people around me – family, close work colleagues – and wearing an emergency medical wristband with my diagnosis so far on helped me to relax and feel that if I started to inspect the carpet unexpectedly, others would be armed to help me out quickly. I managed to buy some silicone medical wristbands with name, hospital id, condition and my wife’s cellphone no on for £12. As we learnt more, I bought a new wristband. You can also store the same information in the emergency / health app on your phone as a resource that more people will look for these days.
As Mike says, there’s no reason to think that you’re in immediate danger: quite possibly if it’s a true AVM, you may have had it for decades. Keep an eye on how you are and if anything significant happens just go to the ER. Do not pass Go. Do not collect $200.
Go very steady on the exercise. Pushing heavily I think will exacerbate it. Patience now could pay dividends later. Definitely validate the exercise you’re doing with your doctor.
It’s scary but we’ve all been there and got through it at least mostly ok!
Very well said & written - I just didn’t want to type that much - I thought mine was a lot. Lol
Mine was dAVF, but according to my MD’s I most likely had it from birth - due to size & location
But, I asked them on the chances of either - they said it’s a solid 50/50
Geez guys, I hope I see 50+ Seems so long away after what happened to me last year. But, time is starting to fly again - the few months after the hemorrhage seemed to have lasted years
I lost control. I always have to tell myself not to say everything I know but rather to allow a conversation to develop. Fail!
Clearly, @Chloe your doc has already mooted either gamma knife or embolization. The one positive to take from this is that gamma knife is only a sensible option if you’re not in immediate danger because it takes a long time to work. So if he/she is already considering gamma knife as an option, I think you can relax a bit about it doing anything crazy soon.
Hope this helps,
Thank you so much. I’m going to see the DR in a couple weeks. I spoke with my trainer at the gym today and if I go back tomorrow I will go very easy.
But for me mentally I need to do something and exercise helps with the aniexty. But I won’t push it as hard or even close to as I was .
And I hope and pray they want to just monitor it and I know it hasn’t bled so I am lucky.
I wish you well and thank you again for the advice.
Hi yes he mentioned both of them to me after my angiogram. He did tell me if I wasn’t young he would leave it alone but because I’m still young he would like to treat it .
But yes I have read gamma knife takes awhile to work so that does make me feel better .
Thank you for the words makes me feel so much better .
Whatever happens, gamma knife is quite uncomfortable but very brief. Embolization is a more involved operation but I can tell you first hand that it is perfectly gettable-throughable and if my doc told me tomorrow that I needed a further embolization, I’d be comfortable going in again.
Just let us know how you get on, any questions you have in readiness to see the doc and we are here to help.
Very best wishes,
Thank you so much I’m sure I will come up with more questions .
I was diagnosed with bilateral AVMs in June 2020 and was age 50 at that time! I was informed it was congenital. I was also told that living to our age was a good thing if there had been no inkling of it before (however, I’d had Bells Palsy 3 times as well as the speech issue, which I’d blamed on my diet at the time…but never a ‘bleed’).
As my AVMs are on the inside AND the outside of my brain, my only option is possibly Gamma Knife on my right side and there is no option on my left. I’m waiting to hear back from The National on this…
Up until my diagnosis I had been going quite hard at HIIT exercise (the first two months of the UK lockdown) at home, and then experienced speech issues one night and was admitted into hospital as my symptoms were thought initially to be stroke. I have always exercised my whole life and so once out of hospital, many pounds heavier from the awful but short course of steroids, I was advised to take it easy but have slowly built up my exercise level bit by bit - we are all different so must listen to our own bodies. It’s difficult to not be as active as before but when I do ‘mountain climbers’ for example, I only do a few as I feel pressure building up in my head and I feel like this is not a good thing. I also sold my saxophone immediately as I feel/think that blowing hard into it could also create pressure in my head that would not feel right at this time. I hate no longer driving but I’m fortunate enough to be in London and am adapting…
Different doctors have told me different things regarding exercise and other high energy level activities, but I’ve read that it all depends on what you were doing before being diagnosed - some will have been completely sedentary and some will have been very fit; listen to your body, I say.
I have eventually come to accept the fact that life will be different and am focusing much more sharply on the things I want from this life - and reaching for them as this diagnosis (and the bloody virus) are making me value time more than ever before - every minute of every day…