Anyone here with an AVM??

In March of last year I had a brain haemorrhage due to an arteriovenous malformation. Long story short it's a tangle of blood vessels in the brain that form at birth which has various weak spots that can burst. They're a rare occurrence so I haven't met many people who know about them, so anyone here have one or know someone with one? (I'm 21 by the way)

15 Replies

  • Hi

    In March 2012 I too had a brain haemorrhage caused by an Arteriovenous Malformation (AVM). I was 49 . I have been incredibly fortunate as Im rehabilitating amazingly well. Having been off work for 8 months I've just started my phased return to work and it feels fantastic to have got to such a great milestone. Its not all been plain sailing, sometimes it's two steps forward and one back, but it helps to be positive, as its a miracle that I'm still alive. I'm praying that my success story continues. I would be glad to hear your progress and hope I can be some encouragement?

  • Great to hear that you're doing well. I always like hearing other people's stories because no-one ever knows what an AVM is! I'm at uni slowly returning to studies, it's difficult to learn again, but I'm just seeing how it goes. Did you get operated on?

  • Hi

    Great to hear you are also managing to return to normal life.well done indeed. Yes I too find it more difficult to learn new things, but my long term memory appears to remain strong which is great. Yes, I've had the stereotactic surgery in October 2012, which is the non invasive type. How about you?

  • Originally, they told me mine was inoperable, which was a fairly horrible 4 months. But a gamma-knife centre in Sheffield called me in and they said they could give me two sessions and that should work. I had one in August and the other in September 2012, so pretty close to yours.

  • Hi again,

    It's so great that you were able to be helped by the Surgery after the original less optimistic diagnosis. When i fell ill, I too was whizzed into Royal Hallamshire Hospital, Sheffield , I was originally in an unconscious state, but miracles do happen and I am happily here to tell the tale??. I returned to RHH for the Gamma knife surgery as you did. For me, the surgery has only started the process of healing the ball of tangled vessels, as it takes a period of time for them to shrivel up and die. I'm currently being called back in two years time for another cerebral angiogram to see if I'm healed, and thereby safe from any reoccurring haemorrhages. If I'm not clear, I wait another two years for another cerebral angiogram test. If not clear by year four, they do another Gamma knife surgery.

    What's your future health outlook looking like?

  • Ive just noticed your original post was a year ago. I hope things are well with yiou :-)

  • Well I'm getting there, apparently because I'm young recovery should be quicker. I did lose some eyesight which was annoying.

    I could use your opinion on something as you're a person who had this around the same time as me. I'm part way through a degree at the moment, I'm repeating 2nd year now. I just want to know, do you think I'm mental for going back now and not later? How would you feel about it if you were in position?

    I know you might not know, but I could use your thoughts.

  • I too have lost eyesight, the right peripheral vision in both eyes, so currently unable to drive unless it returns, which does prove restrictive at times. what about you? Medics tell me I've had a large bleed, which means vision unlikely to return for a minimum of 18 months, if ever.

    On your question about whether to study on, or take a break,I would comment as follows.

    My short term memory has been affected. whilst I'm able to return to work OK, I'm using my long term memory predominantly, which remains intact. I believe I would struggle immensely if I were , as you are, having to learn new information daily, in large quantities. I also suffer from mental fatigue,which worsens as the day goes on. Plenty of breaks to rest the brain minimise this .

    Do you also suffer from mental fatigue? Does your head go ' fuzzy' sometimes?

    How do you find it , when you revise, and test yourself? If you manage to retain the information, I see no reason to stop.

    If you too struggle retaining information, and your recovery outlook is that you will heal quickly because o f your young age, then it may well be worth taking a year or two away from studying, whilst your brain heals. The medics told me that the majority of the brain healing takes place in the first two years.

    If you too get mental fatigue, I would b e interested to know what tactics you use to minimise it?

    Whats the medics opinion on the possible return of your vision?

    Hope that helps

  • Hello,

    I just found this post and I want to say how happy I am for you both and the wonderful progress you are both making. Long may it continue. It is truly wonderful to learn that 2 people have had treatment for AVM's and come out the other side doing so well.

    Love and warm hugs xx

  • have you had an AVM as well SandraEB?

  • My son had an AVM :(

  • Hi I had a brain Haemorrhage in September 2013. I was in hospital for 6 weeks where a routine angiogram discovered my AVM ( I know now much about them now, but at the time nada!!) On December 5th 2013 the AVM was removed surgically and last week a follow up angiogram showed the operation was a total success.

    I'm 40 and hoping to get back into working life in some format. Did you suffer with fatigue? My fatigue levels are borderline chronic! Financially SSP is not the best and I'm fortunate my mrs earns well.

  • I'm keen to get back to working life, but it also terrifies me. The haemorrhage left me with impaired left field of vision.... I feel apathy a great deal, fid/do you?

  • Hi again,

    Yes I'm still alive and kicking thanks!

    It's 18 months since the Gamma knife surgery, so it's only another six months till I have my first 'two year ' check up back at RHHospital Sheffield. It's gone so fast I can't believe it's nearly here. The check up should take the form of another cerebral angiogram (which is entirely another story!). I'm praying that this will result in confirmation that the AVM has shrivelled up and died, and I am healed for good

  • I nearly fell of my seat tonight when I saw the letters AVM. Iwas 65.5 when I had my BI last March. So, old enough to everyones grandma I guess. I've seen 'AVM' in one of my medical notes - I live in France we get to keep copies of everything including brain scans. But never known what it meant. So many comments here ring bells with me, so I would like to return to this post and will note your usernames and if you don't mind will start a conversation with you all on this subject!

    Its 1.35am here now, I have a 10am appointment with a Notaire so must catch up on some sleep. Good to hear you younger ones are doing well or better in terms of your recovery. Shirley x

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