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AVM Survivors Network

My Dilemma

Hello everyone

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.

thanks

Thanks for sharing your story, Ninja Kitty, and I understand your fear but commend you for posting this discussion.

Hi Ninja Kitty, I'm also from Scotland. I would recommend getting treatment before any bleed. I understand your fear and confusion :( . I had a bleed on 31st Dec 2013 and needed emergency surgery to remove a large blood clot and pressure on the brain. I don't really remember anything after going to the bathroom at home to be sick then I woke in hospital after brain surgery and they were asking me to sign a consent form for an Angio ... crazy and silly to be honest !. I'm just waiting on my date for my surgical removal of my AVM, This was the only treatment I was like I really don't want this one ! ...... but the risks of serious health issues or worse are higher than the risks involved with the treatments (I think) so I'm hoping to get treated and then move on with my life fully healthy. I have to consider my kids also in the thought process in that I cannot be left alone with the kids without having to call my mother night then day so she knows that I'm ok etc .. they are young and couldn't really get help etc .... just my opinion but I would say get the bet treatment that they suggest and then live your life fully with no regrets :) . Take care and please let me know how things go with you. Take care.

Hi,

Of course everybody's situation is different and it's only you who can make the decision, but my advice would be to tackle this head-on. I myself recently had a bleed and they're not fun at all - I was (temporarily, thank God) paralysed on my right-side and now I'm awaiting surgery. The issue is that there's no telling how bad a bleed can be. As you say, the AVM will likely bleed and after that will require surgery anyway - 6% isn't high and a bleed could make that percentage a lot higher, or worse.

Whilst surgery seems the scarier option, the waiting and fear that it can bleed at any time is far worse to bear, if you decide to go down the surgery route, you know what you've got to face, you know the risks and you know what is going to happen and when. You'll find lots of support on this site whatever you decide but you CAN do this.

Yes I currently live with my mum she helps me take care of my kids as I have blackouts (not related to my avm according to my neurologist). My ex partner thinks im faking this and doesn’t seem to understand the severity of my problems so I’m now on my own with my 2 kids and my mum… my son wants me to have the operation. … he’s 13 yrs old and said mum I want you to have it done now before your head goes pop… the thought of surgery scars me but the thought of bleeding out and being that 1 on 100 who doesn’t fully recover from the initial bleed scares me more. Thank you fir your replies. It just affirms my decision that as surgery is my only option… I can not see the point of walking about for the next 10 yrs worried I might bleed out… that option seems ridiculous to me. I see my Surgeon on the 23rd and then we will set a date for surgery. … I am so grateful I found this site now I dont feel so alone. Thank you all xx

Yes I currently live with my mum she helps me take care of my kids as I have blackouts (not related to my avm according to my neurologist). My ex partner thinks im faking this and doesn’t seem to understand the severity of my problems so I’m now on my own with my 2 kids and my mum… my son wants me to have the operation. … he’s 13 yrs old and said mum I want you to have it done now before your head goes pop… the thought of surgery scars me but the thought of bleeding out and being that 1 on 100 who doesn’t fully recover from the initial bleed scares me more. Thank you fir your replies. It just affirms my decision that as surgery is my only option… I can not see the point of walking about for the next 10 yrs worried I might bleed out… that option seems ridiculous to me. I see my Surgeon on the 23rd and then we will set a date for surgery. … I am so grateful I found this site now I dont feel so alone. Thank you all xx

Hi Ninja Kitty, Yes my wife found me on the bathroom floor and I could speak and answer questions etc ... but I don't remember a thing. That's probably why its easier for me to jump into surgery again. Since I've had it at already and recovered with no side affects except daily headaches but I do have pain killers that work most of the time :) so that's just minor :) . Its hard to make anyone understand what your going thought if they haven't been through it also. Remember you have a life threatening disease !, So you have an excuse to be grumpy or a little unhappy. My hairs grown in so much now that I cannot see my scar from the first surgery, But hey I'm alive and that's really all that matters !, Having kids makes all things harder also, your thinking of them as well as yourself. Either way I wish you well and hope you get what you need and full health again.

That’s my main concern my children… I’ve had chemotherapy for cancer when I was 25 till I was 30 I’m now clear… shaved heads are my forte lol… I’m definitely going topopt for surgery it seems the most sensible option and the 94% chance of full recovery and it never coming back fills me with optimism. Recovery period is estimated at 6 months according to my Neuro Surgeon (Dr Foyas he’s at Edinburgh Western General Hospital this is where I was referred but his team Dr Keston etc also work at southern general)
My only big step now is choosing wether to stay with Edinburgh hospital which is further away from me (I live in Balloch near Loch Lomond) or transferring to Glasgow which is closer for my family to visit etc. Thank you for your reply and insight. It seems that choosing to wait and see what happens isn’t the best idea… I’d rather take my chances with surgery than anything else. I will keep posting updates as I go through my journey. Thank you

Thank you it all makes perfect sense… being told to wait for a bleed which most people recovery very well from is all good and well… I mean I may never have a bleed but it’s not something I’m willing to risk happen. I am going to opt for surgery and the recovery time is long and arduous but at the end if the day this time next year I would be avm free… less anxious… and be able to live my life to its full potential. Thank you for your reply and encouraging words. Sometimes I think we need to basically take the bull by the horns and do the right thing. Thank you

ah .... I was wondering about why you were going to Edinburgh when the Southern is one of the best Neuro units in Europe :) , Its refreshing to hear also you don't care about hair etc :) . I also am the same suppose its a little different for a guy .. but still I'd rather be healthy and alive !, That's all that matters :) . I live in Barrhead which is close to Paisley so not too far, Best of luck to you and your treatment :) .

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Hi
I was diagnosed last year & the doctors in Melbourne said that it was too risky to do surgery & they were treating me for seizures. I had a seizure while driving, managed to pull the car to aside & thats all I remember.We went for a 2nd opinion with Prof. Micheal Morgan in Sydney Australia & he said the only option for me is surgery because of the size & location of it. also 10% chance of paralysis & other side effects. ( Which is very scary too & high) I have decided to do surgery, & it will be on the 8th next month. Living with is not easy which I have done for 1 1/2 years. Taking the decision to do the surgery wasnt easy , I am very scared of the surgery, all negative thoughts come to your mind, Please dont let them over come you. I keep thinking which is better, living with a time bomb or get it removed. This site is very surpotive, there is lots of us going through the same thing. B this time next month I am assuming I will be going throuh the surgery. Will let you know how I go.Pray for you to have strength.

My prayers and thoughts to you and yes keep me posted on your op and recovery. I’m aiming for August/September this year for my surgery… I try not to look at the 10% being high… I look at the 90% of it all being ok as even higher. Stay strong stay positive and you will be fine. I understand your fear as I have it too… but… if this operation cures your seizures you get your life back. I suffer blackouts with minor twitching I currently don’t get left alone with my kids in case I blackout… so my vision is after I go through this scary thing I won’t need to be constantly supervised. Again God Bless and my prayers to you (I am Christian I know many don’t have faith but it’s the thought that counts). Thanks for the reply I appreciate especially at this time. Xx

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