I recently found out that I had an AVM.. thankfully not in my brain/spine (one malformation up there is enough!)
mine was actually in my colon.. which bled and ended up in hospital.
They cauterised it during a sigmoidoscopy, which was when they told me what it was that caused the bleeding
just wondering if anybody has had it before that then occurred elsewhere in the body?
im so scared that i'll have another one elsewhere :(
the reason im asking on this forum is because my gastroenterologist mentioned it is likely to be mimicking the chiari malformation i have... but i think he was getting it confused..
hmm.. i dont know. just fed up of being ill :(
We actually have an AVM forum : AVMSurvivors.org. This is the first Discussion Forum Ben Munoz started. He had an AVM & Stroke & had no one to talk to & that was the beginning of Ben's Friends. The AVM forum has 1000's of Members. I have been working with them this morning. I just joined their forum to help some others transition to the AVM Forum. Everyone I have met there is amazing.
Please let me know if you need any contacts or anything I can do to assist you. I know you are overwhelmed & fed up. Being ill all the time is horrible. I am sure the AVM group has Members that have AVM's in different parts of the body. It is interesting the doctor told you the symptoms mimick Chiari. Wouldn't it be great if you could have the AVM taken care of & never had to worry about Chiari again? I don't want to give you false hope, but ....that would be wonderful.
Thanks Tracy!
I actually saw the AVM forum just after i posted this lol
i think my gastro got confused and just saw ‘malformation’ on my notes thinkibg i had an AVM up there too… but i told him it was chiari not AVM…
Maybe because theyre both congenital? I dont know…
im ok about it at the moment. Because i feel lucky my AVM was easily treated but painful. . and certainly not as serious as the usual AVMs
Hmm? I have a mass on my kidney, I have not been able to get answers to what that is.
I also Malformation removed from my right frontal lobe that was bleeding in 06'. Does make me wonder if all this goes together!
Well both the AvM and chiari are malformations that occur in the womb.
makes me wonder what my mum was doing when pregnant with me?!? Lol
(Please note… i dont like my mum. so not suggesting it is the mothers fault)
When my mum was pregnant with my little sis… she drunk wine everyday and smoked heavily too. so fingers crossed no damage occurred to my little sis!
I get ya! LOL My mother felt so bad when she discovered this and came to me in tears to tell me she took the anti nausea med that they pulled off the shelve due to children being bored with malformations. Hmmm??? Opps!