Does anyone know how large is too large for them to operate. How deep in the brain is too deep also? I’m afraid mine is going to be inoperable. I do not want to live with this thing in my head.
Hi Chrissy, I don't have answers to your questions I wish I did, but I can read the fear in your posts and I'm sorry you are experiencing this...It's crazy isn't it! I have learned that you have to take this all sometimes day by day but you have to stay positive. I am glad they found your AVM before it has caused you more issues. My daughter had a hemorrhage and that brought her AVM to our attention, hemorrhage was challenging to overcome but she survived the bleed but her outcome in the end was a crainiotomy and removal of her AVM. Start writing down all these questions in a binder, no question is too silly. I had pages of questions for my daughter's surgeon and he was wonderful answering them honestly and in detail. Get second opionions and ask you doctor to be honest with you, if this is something he is not skilled in treating then find yourself a new neurosurgeon, ask him his experience with AVMs. Get copies of all your scans, many times you can wait for them or pick them up. Stay organized so that if you find a new dr. you have all your scans in one place. I had a 3 subject notebook, MEDICAL, INSURANCE, SCHOOL ..I kept everything in that binder questions, scans reports, notes of who I spoke to w dates and times.
Hopefully you have options with treatment and doctors, you will have to put a lot of trust in your team of neurosurgeons, so be comfortable with them. You will be in my prayers and if I can be of any help please contact me.
Hi Chrissy,
Not an easy question to answer. I think if you have a very large AVM, conventional surgery right off the bat to remove it is out. But large AVMs can be treated by embolization and/or radiation to reduce the size, then surgery to remove the remainder. Depth I don't think is as critical as location to other important stuff.
Hoep this helps.
Ron, KS
My AVM was 6x3x3 cm large- deep in the right temporal lobe, with deep draining veins - and after my first angio I was told it is a Spetzler-Martin IV and they declared it inoperable - coz the risk of death would be too high. A very competent Pfofessor did it anyway - I wanted it this way coz I didnt want to live with that bastard in my head - and what shall I say - all went great- so ucannot answer in general whats too large or too deep - there are so many factors having to be minded about - its different in every case. Please be strong and stay positive, take care XXX
Morning Chrissy,
This Is A Good Question.I Feel The Same Has You.I Have Just found Out I Have A AVM Large In The Left Frontoparietal.My Doctor Told Me That I Have Had This For 48Years.Im So Shocked,I Have Yet To See My Neurovascular Doctor. Im Due To See Him On The 27th Nov.I Have Made A List Of Question to Ask Him.Im New To This Site. The People Are So Lovely And Caring And supportive.Thinking Of You Chrissy Hugs To You.
Crystal x
Thanks to everyone for the answers and for being so nice. This is a great website and I feel lucky to have found it. Now I don’t feel so alone. All I know is this demon in my head has to go.