I have been terrified since 2 years ago when I was finally diagnosed with an in-operable brain aneurysm after years of migraines etc.
I am diagnosed with severe Ehlers Danlos syndrome (EDS) type 3/4 (lack of collagen) so since my tissues are so fragile...I am now 43...they are terrified to go in and sort this thing and refuse to do so !
It was 5-6mm 2 years ago in the left internal carotid brain artery but they have not checked it since....
(-is that big with my fragile tissues ???)
It is one of those long wide types in the main artery with the main bloodflow for the brain.
Since then I have had almost constant migraine that lasts for weeks on end with no breaks(migraines for 10 years though) (their betablockers don't work at all).
I have become more stupified and confused and not able to find words...thinking process comes to a stop and I am standing there thinking "what am I thinking ?" ha ha.
I have fallen a few times as well.
Spelling goes out the window and I was always a good speller !
I get earache and numb areas in my head/tingling.
Always really tired even after 12 hours sleep ! I am not driving much as I am not safe most days.
I get sooo depressed about this thing...after major surgeries all my life and bringing up one daughter (now 20) with AD/HD, Aspergers, Dyspraxia, Dyslexia and EDS I feel like I have just got my life back and now this !
I don't know why I am posting this but just thought I'd share with all of you who are going through the same thing.
Even the expert on EDS said "don't touch it".
They say the migraines are "not related" to the aneurysm- AYE RIGHT !!! -THEY SOOOOOO ARE !!!
I am just wondering- if I have all these symptoms and 3 other surgeons are refusing to do other surgeries that I need done(knees, hips and prolapses of two areas)- just because of the aneurysm and say get that fixed first(I would if I could she says)...when do they think this thing is going to burst ? (always going off in a tangent too lol - hope that made sense !)
I have been told it will be quick and a huge bleed so I will feel a thud then nothing, I will be dead in seconds.
They can't go in because of where it is they say(main artery behind/just below left ear) they think my tissues would fall apart(without even testing them) stitches wouldn't hold (true possibly) and yes they are right I will bleed as I always do during surgeries but that can be controlled surely...well maybe not in this instance.
So that's me then !
New fangled surgeries ? ...well no-one ever says anything to me or wants to try them on me.
Other surgeons get annoyed at me being sent to them for other surgeries as they won't take the risk and cannot understand why I am being left. (Makes you think they are not expecting me to be here in my 80s with all these things falling apart and no surgery then lol !)
I get told it might never happen, yet it is well known people with EDS die young.
I have always fought everything since being born with a severe depressed sternum and ribcage which was sorted twice in 4 surgeries, 2 major, other prolapse surgeries, losing a baby in the womb which had to be removed, didn't walk till I was 2 due to unstable dislocating joints, etc, then pain pain pain my whole life- and too much more to mention- and I've always gone for new surgeries as well but now I feel like they have taken my "fighter" tag away...I am over 40 now and they won't touch me ! Grrrrrrrrrrr !
I think about this all the time- despite trying my best not to...it always comes to the fore !
*No-one will do the surgery...believe me I have asked !*
Oh and yes I do try to keep busy....
Not litterally but- I am RUNNING and I am keeping on RUNNING AWAY FROM THIS THING !

*RANT OVER*

Don't need any answers to this...just my story so you all know you are not alone in feeling UTTERLY HELPLESS !
......Debra in Highland Scotland

So sorry Debra - that is what places like this are for - so you can 'download' all that fear.

No words, just hugs

Lyn

Thanks Lynn....that is just what I need(A HUG LOL) and a virtual hug to you too x x x

Hi Debra, just sending thoughts, prayers, and hugs your way. This is a good place to be with alot of caring people.

Patti