I hope im posting in the right place!! Im 33, live in the UK and 4 years ago started having some tingling down the right side of my face. This was during an IVF cycle and was put down to stress as id had many ivf cycles and 7 miscarriages in the few years before this. GP sent me off for a scan just for a 'peace of mind' and this showed an 'abnormailty' in a bloody vessel which was nothing to do with the face tingling (this has since turned out to be trigeminal neuralgie...joy!). My internal carotid artery on the left side does a complete 360 degree loop when it should be nice and straight. Off I went for an angiiogram in the Walton centre in Liverpool and it was confirmed as a 6mm aneurysm (surgeon intially thought it was just where the artery twisted on itself) and another 1mm which cannot be seen on normal MRI scans. The initial plan was 'watch and wait' I was given a 0.5% rupture rate per year and therefore they felt as this was relitively low it was riskier to do something. The larger anuerysm cannot be coiled because it is on this 'looped' vessel. my head has been scanned 7 times since and no change to either......phew!!
Last year I toddle along to my usual appointment but this time I was finally 26 weeks Pregnant :-) and at this point the neuro nurse specialist tells me that theres once again no change on MRI but the surgeons are now relooking at their younger patients and revisiting the idea of surgery :-/ So after the baby is born they would like me back to meet the team and discuss clipping of this aneurysm :-0
This appointment is now in 4 weeks and i am absolutely TERRIFIED. I do not consider myself a nervous person and I can usually just get my head down and get on with things but the whole thing makes me physically shake if i think about it. I have a beautiful 8 month old daughter and I am so frightened of leaving her firstly if the surgery goes wrong and secondly if one of these things rupture. Before i had her I thought about them from time to time (mostly when a scan was coming up) but I could get on with life. Now its like A ticking timebomb in my head.
Ive got a whole list of questions for my surgeon before I make my final decision and ive done my research on him and he is clearly very very good but arrrrrgggghhhhhhhhhhhhhh
This is why im here as noone at all understands and lots of people around me know 'Joe Bloggs' who had a brain aneurysm and died and tell me i 'need to get it done' but incidentally dont need to make this decision nor have their skull opened up!!
Hi and So glad you shared your story...it is so natural to feel the way you do right now...although I think you will feel much better after you go to the Neurosurgeon and have your questions answered...
Read here and see so many inspiring stories...this will help you realize there is life after the clipping...
Gotcha in my Thoughts ~ Colleen
Ps stay away from those that are negative...you have to do what is right for YOU...
Yeah its really got to be disconcerting with your friends are hammering you to get brain surgery and the inevitable reference of "look at Joe Bloggs" --comes up, as if you''re just to walk head on into surgery ! If only it were so simple !
I've undergone 2 (open) brain surgeries/clippings, the 1st one being under an emergency situation so i didn't have to think about it too much --Thank God--and the 2nd one to fix my coiled annie from another time (this one I had to think about beforehand), and although making the choice between having more coils added or a clipping, i went with the clipping as i like the idea of a permanent fix.
I am very pleased that I went with the clippings, and the recovery of each was quite different from each other--my last one was a breeze overall in terms of recovery, and i was driving within a week and a half after surgery.
Good for you in gathering a list of questions for the surgeon! One thing that threw me for a loop after my first surgery was the fact that my surgeon had cut through my jaw muscle on my right side to gain access to the annie--made for opening up the mouth to eat anything painful--so you might wan t to ask how he would go about getting to your annie, see if your jaw muscle will be affected or not (If so, you can stock up on lots of easy to eat foods beforehand) .
I know this this certainly isn't easy Karen, but you're ahead of the game already by first of all knowing about having these 'timebombs' before disaster were to blindside you , plus being comfortable with your surgeon is major all in itself.
I was going to wait to do anything until my daughter graduated from high school. But after reading the inspirational stories on here...I decided to go ahead and have it taken care of. I can happily report that after having the pipeline stent put in - my aneurism is 100% gone! If the pipeline stent is an option...I highly recommend that route. Best wishes dear...and congrats on your new baby.
Thank you so much for the warm welcome and support. Im slowly starting to realize that I have an opportunity to grab hold of this condition before it potentially grabs me. Yes im more frightened than I could ever say but I want to be free of it and bend over to pick up my daughter without worrying. I guess ill have to see what the surgeon has to say.
Randomly I had my haircut today and without her knowing anything about me the hairdresser starts telling me how she lost her mum aged 49 last summer to a ruptured brain an. She went on to say how the whole family have since had scans and one has been picked up in another relative. She went on to say how 'lucky' he is as he can do something about it. Funny really as im sure he doesnt feel 'lucky' whatsoever but it might just be fates way of changing the path he was on
ive had some genetic testing last year because of the twisted vessel inside my head. Connective tissue disease has been ruled out but genetics want to look for collagen disease. Quite a few conditions have been ruled out so far but I had to have a break in my pregnancy as it was all just too stressful and getting on top of me. So back I go on tuesday to say what they have to say. ill be fine unless they mention anything to do with my Daughter, I know its a possibility but I just cant cope with it
Thanks for the update...and so true about grabbing to the condition before it grabs you...Just be sure to take care of YOU along the way ... prayers and positive vibes out to you ~ Colleen
Glad you found this site. Ive came across it the other day as I too have this flippin things, though they are unruptured and were found on an MRI scan. Two of them... one is 5mm and the other is 3mm. Im from Liverpool origionally but now live in Cumbria. We were lucky enough to retire (at a very young 54 tomorrow yey) and relocated here by beautiful Lake Derwentwater. I have my appointment with the Neuosurgeon on the 16th May, and was going to go to Walton but now Newcastle is nearer, but really terrified at what they are going to suggest. Ive trawled the internet (not always a good idea either!) but as this is a support site, it has given me some peace in the chaos. My husband is also shocked but so supportive, even so. I suddenly find myself seeing the world in a different way and scared that it will no longer look the same. I love biking and walking but nervous of doing anything that will increase blood pressure though Im on meds for that.
There seems to be a few different ways to deal with them but the clipping at least is permanent. Good luck and be strong, congrats on your little babe. Maybe we could meet up in Liverpool sometime as I go back and visit once a month. Very best wishes and I will stay in touch:)