How old were you when your avm was detected?

General
41

Nine.

beans

42

I was 36, I did have 2 seizures but very isolated ones 1998 & 2007, I had headaches and migraines sometimes but not too often, I always put it down to my job in IT and working behind a screen for 8 + hours a day and having those rubbish Office lights, Never guessed I had a life threatening disease :( . I only found out due to a bleed on 31st Dec 2013. Hoping for a full and healthy life after my avm is surgically removed :)

43

29yrs old. No symptoms prior. Went out on our boat to take my nephews tubing. Suddenly experienced a severe headache, began vomiting, and woke up 5 days later in the hospitalā€¦never heard of an AVM priorā€¦

44

3 days ago, Iā€™m 29. Had a seizure in the car with a friend of mine. Iā€™ve had headaches lasting for a week at a time before but was told they were cluster headaches.

45

Thanks lulu. My neurosurgeon has also said my AVM is in the best place to be operated on but in the worst place too have a bleed!!!!!! I just want to get it over an done with and hope I come out of it the other end headache free. Can you not have any of the other procedures?????

46

Hiya. They have suggested Gamma Knife. But I would need at least 3 embolisations first. And even then there is only a 50/50 chance that it would do any good. I would also have to travel about 4 hours to the hospital because here the hospitals that offer treatment are few and far between. So family would be unable to visit. I have always felt it would be a lot to put myself through and worry that I may 'anger' my AVM and make things worse for myself. I suffer from Hydrocephalus which is related to my AVM but it is likely I would still have that even if my AVM were obliterated.

47

Hi. I'm so sorry that you have only found out so recently. It must have been a terrible shock. I too had very bad headaches at first (later I had vomiting too) and was told these were Migraines. Trouble is that AVMs are rare and GPs are often unaware of them. It was only when migraine tablets didn't touch my headaches and I had a CT scan that medical staff became aware of a bigger problem. What is the future for you? Are you going to pursue treatment?

48

Hi lulu gamma knife was mentioned to me @ my last visit with my surgeon but he still recommends surgery!!! Am going to see him again tomorrow an hope I will get some better answers and maybe a date for the operation hope whatever you decide helps you Tchaikovsky!!

49

Thanks a lot. And very best wishes to you. Hope all goes well.

50

I was 57 with no prior symptoms. My AVM burst causing a hemorrhagic stroke.

51

thank u lulu consultant says he is planning to do the surgery in september and hopefully then this AVM will be gone for good and i will come out of it unscathed!!!!!!!!!!!!

52

I was 37 when mine was discovered by my primary Physcian

I only suffered migraines my whole life.
53

I was 33 yrs.old. Had zero symptoms, until that day. Doctors were amazed at that, but, itā€™s a fact. The WORST pain Iā€™ve ever experienced.

54

it was bleeding when they detected it and emergency surgery the same day when i was 14 years old. did know what happened until a week later.

55

56

I was 53, and as I told people later I felt then more like 46, but after
the AVM and bleed felt more like 60, or more. But things are better now!

57

Hey John, I've commented on your posts before and now I see in addition to us both having wonderful, supportive spouses, I was also 53 when my 1st AVM burst.

58

Yes, in the case of suffering an AVM and bleed...guess it is far better
to have it in one's 50's than to have it as a child.

59

Responding to John Pā€™s comment on having an AVM bleed in your 50ā€™s being far better than having it as a child, I always thought the opposite. I had it happen in 1959 at nine years old. I have lived for over 55 years with the results of the bleed (vision loss, learning disabilities, etc) but I always thought it must be so much harder if it had happened when I was older. Kids donā€™t know what is going on, all decisions are not for them to make, and the kid just does what she is told. I luckily lived through it all, but my family never made a huge deal about it. Back then it was bad to mention the word ā€œcancerā€ out loud, and no one knew what AVM was.

I never realized then how much that whole ordeal would still be affecting me now that I am 64.

beans

60

beansy,

I am surprised to read what you say. I always heard that children had it rougher
in a major cerebral bleed what with the smaller diameter blood vessels and such.
Most perish I thoguht. But I am glad that you have made it to age 64. I had mine
later, but am now close to your present age. Hope you continue to do well, and
I always enjoyed surprising the doctors with doing better than their forcasts!
Hope you do as well.

John