My name is Kirsty, I'm 33 yrs old and i live in Scotland UK. In september last year i was sent to neurology for a standard MRI due to increasing frequency of migraines, my General Dr decided getting a neuro to look at my case was the best option. Unfortunately the MRI didn;t find a cause or reason for my migraines, but, it did pick up my AVM, but not clearly enough. After a few months i was refferred to my current Nuero Surgeon in edinburgh a man called Dr Fouyas, I had a brai angiogram done in April to determin how mjuch of my avm was on the surface of my brain and how much was actually in my brain, my angio reealed that my avm is situated in the temporal lobe of my brain behind the left eye expanding backwards.
I saaw my surgeon on Monday this week (2nd June) and he discussed my options with me which were basically 2 options. I told me i can wait till it bleeds (not something i rly want to happend as i suffer from anxiety and panic disorder and manic depression)then have it operated on or i can opt for surgery. Stents, radiation and other treatment options are not an option for me he has been very clear about this, due to where it is situated and the size open brqain surgery is my ONLY option unless i decide to leave it alone and wait till it bleeds out then they would operate then as well..... This scares me for a few reasons
1. i suffer from severe anxety and panic disorder and walking about wondering if i might just hemorrage into my brain would send me on a one way ticket to the psych ward
2. Major surgery obviously scares me witless, i have been told that the operation holds risks, i was told 6% chance i cold lose vision in my left eye or paralysis downmy right sidea long with other such things.... but 6% isn't huge.....thats a 94% chance i will survive the surgery without any complications.
3.I dont want to run the risk of bleeding out and running the risks of it causing more serious problems.
so basically Im completely lost, confused, scared and petrefied of making the wrong decision.I have 2 children my son is nearly 13 and my daugher is nearly 2.I want to do whats right and i know that major brain surgery has a long long long recovery period but at the same time completely removing the avm has a gaurantee of it never growing back (or so my surgeon has told me) So thats my story i see my surgeon again on the 23rd of June to discuss the surgery more.... I just hope i can make a decision by then.