I’ve just recently been diagnosed with my avm and I’m really scared. I go back to have my first angiography on the 20th. Had my first MRI last week. Any information would be appreciated.
Hi Chrissy. Welcome to the group. I would suggest getting copies of all of your scans: MRIs, angiograms, etc. Look into neurosurgeons in your area that are knowledgable about AVMs. Take your scans with you. Get more than one opinion. Choose a doctor that you are comfortable with and that you have confidence in. Let us know what kinds of questions you have.
Hi Chrissy. There are almost 5000 members on here. You are no longer alone. You are in what I call the OMG this cannot be happening stage. Perfectly normal. This link may have some helpful info…http://www.avmsurvivors.org/forum/topics/questions-for-my-neurosurgeon?xg_source=activity
Hi all, had my 1st spinal angiogram and my spinal surgery 2 yrs ago which left me semi paralised waist down i recently had a angiogram on friday 16th november i was told by the radiologist and my surgeon that it was far to dangerous to embolise and that they would need to speak to other surgeons in other countries and that the avm is extremely rare they are going to discuss my case on wednesday 21/11/12 not sure what the out come of this will be my surgeon as also referred me to a neurological pathologist on the 5th/12/12 ?? My neurological problems they said will get worse and i will suffer further deterioration if nothing is done i was told from the begining there is a high risk of paralasis from the neck down ? Cant say im not scared but i say stay srong and never stop smiling keep you posted once i no more my love to all avm survivors and sufferers and there families thanks for reading steve x
Hi mate
I live in oldham and have an spinal avm as well ive been seeing the surgens at hope salford and they have told me the same and my head is in bits so how have they left it with you
Oops typo. My avm is located in the right temporal lobe. Had my angiography yesterday. Doesn’t look as big or as deep as once thought. I go back to neurosurgery on the 29th to discuss possible surgery. I want this thing gone out of my brain. Thanks for all of the support.