AVM Survivors Network

Hearing loss? and updates


Hi everyone!

I am a bit puzzled to be honest. A couple weeks ago I had a health assessment for a job which included a hearing test. I was put in a small sound proof room with headphones and a buzzer to press each time I heard a noise. The results after a repeat test that was consistant that I have category 3(very poor) hearing in my left ear and category 1 (normal) hearing in my right ear. I dont really understand since the embolisation I had was to treat my AVM in my left occipital lobe but it seems like it could be related since its my left ear.

I have informed my specialists and I am waiting to hear back. Since being told this everything started to add up. When someone talks to me on my left side I notice I tend to struggle to hear what they are saying and ask them to repeat several times - I always thought it was just me being sloppy at focusing on what their saying. I also notice to focus on music in my ear phones I need music at high volume.

Has this happened to anyone else where the AVM is not in the hearing location?

Other than this life has been going well, I am working out several times a week and dieting which has boosted my confidence. I have been dressing up more and more self care. Counselling has really helped me in terms of emotional development. I do accidentally block or bump into people due to my visual impairment and I do fail to hear people sometimes but I’m not ashamed of that. Everyone has their challenges and these are mine so it feels good to fully accept myself.

I have realised my only cause of anxiety has been exams and pressuring myself to recover my memory and visual concentration in time to do 5 exams in 5 days in mid August. I have felt pressure to complete my studies in time to start the grad job in September. I’ve realised the reason behind this is my deep need to be successful, to be a motivated and driven individual, that it is a big part of my identity.

But then I looked at the bigger picture: at everything I have overcome, at how strong I am as a person. I have felt disconnected from friends my age because how we now are differant. They stress out about things that to me are superficial. They don’t make efforts to take power in changing things they are unhappy with. They don’t have the “get up and go” and appreciation of life. I don’t think I am better than them but I realised that despite them being ahead of me in terms of starting their career and for some, relationships - I have also grown ahead in terms of personal development, maturity, outlook on life. That I am infact equal to my peers, we have all been successful and developed but just in differant aspects of our lives. This past year hasn’t been a waste after all or stunted developmently for me.

Not only this but I have looked at friends who have taken a year to find a grad job and not been beating themselves up about it. When I think relatively, taking two years out to focus on my health and recover in the grand scheme of things is not me being lazy or complacent at all. Especially after experiencing brain damage and then further brain damage after my stroke in January this year. Many people my age if faced with years of deterioration, a stroke, visual and hearing impairment, losing half their hair and breaking up with their partner of 2.5 years a month before their op and suceeding in a tough assessment centre traveling to the other end of the country a month post op+stroke would not be putting as much pressure and criticism as I have on myself.

I feel a big sense of relief after this relevation. In an ideal world I would love to get my degree finished this summer and move out and start my career this september. But waiting until next summer where I can do my exams in april/may during normal exam period where I won’t have to do 5 exams in 5 days - that isnt the worst situation really. I have finally got an active social life again, a sense of routine with gym, energy to get out and about and I’m working on self development battling my emotional demons at counselling to be the happiest me. I have adapted to living back home and my parents have adapted to respect my boundaries and space as an adult now.

Thanks for reading I know its been a hella long post!





Sorry, I’ve been offline really for best part of a week, I think. Jotting in some posts but not spending time to read everyone properly.

  1. I think your experience with your AVM has taught you a lot and you’ve got your priorities pretty good. Most of your post is about this, really. Keep at it. I’m not sure what to suggest re exam pressure or work pressure… the only person who knows whether you’re challenging yourself appropriately or overdoing it is you, maybe your mum. Be sensible.

  2. Hearing loss. I think hearing loss is relatively common in embolisations around the occipital lobe and back of the head there. I don’t know that they are. I just think I’ve seen people with DAVFs and occipital stuff reporting hearing issues. I feel like I’ve got a bit of loss on the left, though my left ear is my telephone ear, so I always use it! My extraneous pulse is left ear as well. My DAVF is right occipital. I think either blocking stuff off on my right has increased pressure in the arteries and, having got higher pressure in some places, a vessel going past something in my ear is constraining it somehow and I can hear the pulse. Or, I’ve got more than one AVM and fixing no 1 has increased arterial pressure that makes no 2 suddenly apparent. Tinnitus and pulsatile tinnitus are definitely associated with messing around with the blood vessels hereabouts. I’m thinking @Angela4 and @TJ127 and I’m sure others who I can’t bring to mind.

So, yeah, I can see a bit of hearing loss being possible. I guess some of it could be neurological – related to pressure on nerves – or some of it could be more mechanical – related to pressure on the passageways through which we hear.

All personal theory rather than any medical knowledge.

Great to read about how you feel.

See you soon,



My AVM is in the right side of my cerebellum and all my issues are on the left side. I did have Stroke due to some migrating “glue” though which one symptom was muffled hearing in my left ear.
I was told by one doctor that my hearing loss was not caused by my Stroke??!! I was so mad!!
I think you are very brave and you do need time to heal and get over this “trauma” its not just the physical issues we have to deal with but our mental ones too. Your positivity is inspiring. Thank you.


Hi Richard,

Thankyou for your reply! I have been told that my neuro-radiologist has been informed about my hearing loss but he says he sees no way that my AVM or embolisation has any connection to the hearing loss. He believes it must be unrelated. I have been told to ask my doctor to refer me to the Royal National Throat, Nose and Ear Hospital (RNTNE) to look into my hearing loss. It will be good to be under UCLH for everything so all my information can be accessed.

I am planning to ask my engineering department for a tricky request. Since fourth year virtually no one does retakes, I think I would be the only person taking the exams in August. For engineering we only have summer exams, no January exams like other courses do. I want to ask them if it would be possible to use these exam papers in January when there will be exam halls, invigilators, and everything already prepared for students of other courses. Potentially… the Job would be open for me to start the grad scheme later. The scheme is run in placements that last for variable periods of months so they could be flexible. We will see whether this could be an option for me rather than waiting until next summer. But I guess right now I have no idea what the future holds with my vision the way it is, hopefully this is a very temporary thing :crossed_fingers:




Hi @MrsCaptainHarkness

It is frustrating, I have also been told my hearing loss is not related to my AVM or stroke too. I will be going to get it investigated at a ENT hospital though regardless.

What you said about migrating glue has made me think, how long after the embolisation did the glue migrate and cause a stroke?

Thankyou so much for understanding and your kind words,



Sorry. Didnt mean to worry you. My stroke happened during the embolisation whilst they were inserting the “glue” Im sure once its in there it stays put.


Not at all! I think something similar happened to me since I also had a stroke during my embolisation too. Not really the thing you want to be high fiving over :sweat_smile: