Unruptured brain aneurysm

[Linedge]

May have the wrong site as mine isn't a brain injury. Diagnosed January with large unruptured brain aneurysm - surgeon says too risky to treat (I also have repaired heart valve and am 68). Recently found out the hospital letter says it's high risk for rupture and I'm on warfarin so no chance of surviving. I am trying to be sensible about this as I know plenty worse off and I have a lovely family - but I do have ups and downs. Surgeon said a younger surgeon may chance doing the operation and have heard of a new 'pipeline' stent which is v successful but would need a second opinion, not easy. Anyway, good to unload - wondered if there's anyone else out there in a similar position?

[Kirk5w7]

Hi, my sister waited 10 years before a procedure came along that could be done on her aneurysm. It was done last year at the age of 70 and has been very successful. It was done at Salford Royal hospital. They had tried the year before but it was too large at that point but along came a new procedure. And all is well x

Hope you find someone able to do this for you xxx

[Linedge in reply to Kirk5w7]

Thank you - I am so happy your Sister is now ok. Feel a bit abandoned as he just said 'go and live your life without hospitals!' l

[Kirk5w7 in reply to Linedge]

Hi again, I'd ask for a second opinion, you are entitled to, just because one doesn't want to tackle it, doesn't mean you have to accept it.

Believe me, it was a long hard and stressful wait for my sister, and a difficult decision because when you've lived with it so long you think " why upset the boat" but her surgeon was so positive it would transform her life and that worry is now gone, those dark clouds don't blight her life anymore.

Take care Janet x

[Linedge in reply to Kirk5w7]

Yes, I know how very stressful it must have been for your sister, all those years of uncertainty and worry and then being brave enough to have the op - it's wonderful it turned out so well.

[cat3]

I really hope there'll be a way forward for the procedure Lin. As Kirk has explained, her sister was in the same position, and with another serious condition to be considered. But this procedure has removed that particular prevailing dark cloud from her life.

Easy for me to say, but I know if it were me I'd put my trust in a surgeon who believed he could perform this new procedure successfully ; these people are highly skilled and won't take unnecessary risks.

Hope it'll be the best possible outcome for you Lin. Sincere best wishes, Cat x

[Linedge in reply to cat3]

Thank you Cat - I just need to find out the route to second opinion and hopefully the new procedure.

[TaIaV]

Hi Linedge,

You are carrying some troubling knowledge and part of the problem is that it is incomplete. Your surgeon's statements indicate that he/she feels there may be other options for you that he/she cannot offer. It does seem like it would be good to aggressively make sure you know all of your options. Once you know for sure, then you can assess the risks and make your decisions about what to do and be better positioned to regain more peace of mind.

In difficult situations I often think in terms of 'managing regrets" -- i.e., making the decision that minimizes potential regret if things go poorly. Right now, you know the possible outcomes of non-treatment. Once you know the actual possibility and risks of treatment, you can come to terms with all the potential outcomes.

It is extremely difficult emotionally to live thinking about both living life fully and an imminent chance of death. I wish you the best.

FYI--I read this in the Brain Anurysm Foundation website:

"Like ruptured aneurysms, unruptured aneurysms may be treated with either endovascular coiling or open surgical clipping. However, if the unruptured aneurysm is treated successfully, the recovery period is generally shorter than that following treatment of a ruptured aneurysm. Although, survivors of unruptured brain aneurysm treatment may suffer many of the same physical and emotional symptoms as a survivor of a rupture, they will have a shorter hospital stay, require less rehabilitative therapy, and return to work more quickly."

[Linedge in reply to TaIaV]

Thank you for info and good wishes - yes, I wish I had asked him to explain exactly why he felt treatment was too risky in my case, I didn't get copied in on the letter to my GP so only found out I was high risk by accident! Will start investigating!

[TaIaV]

Dear Linedge,

You are welcome. I just reread your comments above and saw the quote from your doctor: 'go and live your life without hospitals!' It is an interesting comment and seems like something said with real intent on his part. It may be advice about how to maximize your quality of life in your situation (i.e., "I don't recommend that you thrust yourself into a fraught treatment cycle that might well cut off or damage your current wellbeing when you can simply live your life"). It is advice that we all should keep in mind since the existence of a treatment does not always mean we are better off taking it. Several of my friends have felt bad about the amount of medical treatment-induced suffering that their relatives experienced toward the end of life. All worth considering. In any case, it sounds like you will feel better if you know more. All the best,

Taia

[Linedge in reply to TaIaV]

Yes Taia you are very right - if I have an op there is a chance I could have a stroke or die - I had the same worry when I had my heart valve repair 3 years ago but they more or less told me I needed it urgently so felt I had no decision to make! I guess it's whether I can live with the anxiety, especially now I know it's high risk for rupture.

[peaches2]

Poor you, that's a lot to be thinking about. I hope you find a solution that you feel comfortable with. Best wishes. xx

[Linedge in reply to peaches2]

Thank you for your good wishes xx

[ElleGee]

Hi, I was diagnosed with an unruptured aneurysm last September. I guess I was fortunate in that it's size and location meant treatment was never in question. So I had 26 coils and a stent inserted in December. All good now. But I do remember vividly living with that constant daily fear of would today be the day it 'blew'. So totally feel for you and what your going through. I hope your investigations lead to a positive result for you and look forward to seeing your post when it does. Don't try and push the fear away it doesn't work, acknowledge it, let it be and lean on those you love. Good luck

[Linedge in reply to ElleGee]

Wow, I'm so glad all went well for you, that's a wonderful outcome - I'm wondering if the location of mine is why the surgeon says it's too risky, just wish I had asked!! You know exactly how I feel, I ought to hang a sign round my neck in case it happens when I'm out!!!! I'm looking into if I can come off warfarin as I stand no chance while I'm on that - will see what my heart guy says. Thank you for your good wishes.

[lcd8]

Hi Linedge. I have an unruptured AVM, which is similar to an aneurysm. It is deep in my brain and any treatment would be risky. I am not a candidate for surgery at all so my only options would be multiple embolisations and then gamma knife. It has always seemed such a lot to put myself through so I haven't pursued it. I have known about the lesion for a good 20 years though and it to is large. So much of what you said struck a chord with me. I have also never been too sure I belonged here. But at the end of the day these things are still BIs I guess.

ps I'm 43.

[Linedge in reply to lcd8]

Wow, that's a long time to live with it hanging over you - yes any procedure on the brain is a massive risk, it's so hard to make that decision, especially if you feel well. You're young and you are obviously very strong mentally to be able to live your life with this knowledge. I think I am quite strong and try not to dwell on it, in some ways it doesn't seem real!! Very best wishes to you.

[lcd8 in reply to Linedge]

Thanks for your response Linedge. Yes it has been a fair while. I started having problems at 14 when I started getting severe migraine-like headaches. It was only when I was in my 20s that the scans were detailed enough to show up my AVM. You are right and it is really difficult to decide whether to treat a problem or not. I don't really suffer any deficits day to day either so the 'don't try to mend what isn't broken' feeling kicks in. So far I have been lucky and although I am always aware I have this issue I try to stay very positive - although I accept that sometimes its easier said than done. I am of course hoping the thing never ruptures and that I can live my life through without it causing me any harm. Best wishes to you too.

Lulu