For everyone with an Unruptured aneurysm, do you feel lucky for your diagnosis, which these days are very often incidental, or unlucky to be afflicted with something so life changing and emotionally draining ?
I feel lucky. My Annie was found following a mild stroke. I recovered from the stroke and went on to have the Annie clipped. I was back at work in 6 weeks. Now almost a year later I am waiting on my followup MRI and feel like my old self. I am 59 and work in a challenging IT field that requires me be constantly learning new things. I take life a little less seriously and enjoy each day.
Hi
I’d say we are blessed. We could have continued living life as usual with no effort or consideration for what you have and who you have in your life. Knowing is a bit anxiety provoking at first especially if you don’t have many symptoms that are serious because at least in my case I just wanted to keep living my life the same as usual. I quickly realized that was impossible. Now I live life more fully in the now and aware of today. I have started planning again but if things don’t work out I dont dwell on things. I quickly move on and don’t beat myself up. I appreciate everyone precious to me so much more and appreciate simple things like being able to see hear and walk. Life is precious can’t spend it worried. Living life fully. Hope that helps.
Lydia
I ruptured first I call that lucky to be alive. I have 5 unruptured 4 wrapped n clipped I call that unlucky . Now they found another , more unlucky . I live day to day with all kinds of symtoms
I feel conflicted, somehow ignorance was bliss. The aneurysm is 8mm and is right between my eyes, it can be coiled, but OMG, the potential issues and it is not necessarily a once and done procedure. I am 64 and have yet to tell my children.
I'm lucky. Aneurysm found incidentally. Surgery and recovery were very difficult. I've made peace with who I am now, which is not the person I was before surgery. I had no trouble deciding for surgery. Of those who have ruptures, 50% die. So I'm very lucky the aneurysms were found and treated.
I'm sorry BA but may I ask why don't you feel like the same person after the surgery? Where was yours located that it made it easy for you to decide on surgery? I'm going through this everyday wondering what to do. It's been almost a year since diagnosis and I think about it day and night but I'm just as afraid of saying yes to surgery and coming out "not the same person" as I am to live with it wondering if and when.
BA said:
I'm lucky. Aneurysm found incidentally. Surgery and recovery were very difficult. I've made peace with who I am now, which is not the person I was before surgery. I had no trouble deciding for surgery. Of those who have ruptures, 50% die. So I'm very lucky the aneurysms were found and treated.
That is the million dollar question that I have yet to totally answer within myself. People say how lucky I am to have found it but it changes everything and I don't feel lucky. Plus they say we can wait and watch as it's 4mm, or go ahead with surgery. So now I have the added pressure of making the right decision. God bless all of you! I hope that's ok to say.
Karenrae,
I feel as you do. The anxiety is dreadful.
For me it’s a real conflict of emotions, although chances of rupture are slim, the worry never goes away, and yet I am told I am very lucky. It’s very hard to feel lucky however. Maybe that will change after my pipeline procedure.
I have difficulty concentrating, am easily frustrated, not as sharp as before. I've had 2 sets of neuropsychological tests since surgery documenting the declines. Scores considered inconsistent with education level and professional achievement (I'm an MD). I have balance problems.
2 aneurysms located at an arterial trifurcation. Not eligible for intravascular treatment due to size and shape. Difficult, long surgery complicated by seizures, much more time in ICU than planned, etc. etc.
But the outcome is much better than finding them when they bled. I had a terrific, talented and very supportive surgeon. I'd have surgery again, even knowing what I know now.
karenrae said:
I'm sorry BA but may I ask why don't you feel like the same person after the surgery? Where was yours located that it made it easy for you to decide on surgery? I'm going through this everyday wondering what to do. It's been almost a year since diagnosis and I think about it day and night but I'm just as afraid of saying yes to surgery and coming out "not the same person" as I am to live with it wondering if and when.
BA said:I'm lucky. Aneurysm found incidentally. Surgery and recovery were very difficult. I've made peace with who I am now, which is not the person I was before surgery. I had no trouble deciding for surgery. Of those who have ruptures, 50% die. So I'm very lucky the aneurysms were found and treated.
Both, I'd say! Since it was discovered, I've learned how frequently aneurysms just kill without warning, and how badly off you could be if you survive a rupture.
But the surgery wasn't a complete piece of cake to recover from, in terms of being tired, fuzzy minded, numb scalp, eyelid not working properly, etc. And after surgery I had an unexpected day of massive seizures, and because of them, it's also been year of not driving, a slow recovery from the effects of them, and investigation of all of that.
Doctors can't find much wrong with me anymore and are upbeat. But they also don't to want to say I'm completely in the clear, and won't make any predictions about whether I'm likely to have more aneurysms in my head or elsewhere in the future. I understand that they don't have crystal balls and the data on these issues isn't terribly clear, but it's frustrating for me. And they're not sure what caused the seizures or what the chance is they could happen again, which also frustrates me, and they keep bringing up the possibility of other issues -- perhaps a genetic connective tissue disorder that would explain aneurysms and some other medical issues I have.
Basically, the one MRI done to check on a not-important issue with my eyes led to a surgery that probably (but not for sure) extended my life, but it also created a whole new range of concerns, chains of doctor appointments, reasons to worry, and ways to spend my time and money.
I chose the surgery because I couldn't handle the anxiety of "watch and wait" and it was a good time for me to do it, in terms of insurance coverage, time off work, kids old enough to feed and bathe themselves, etc. But I also expected a much easier time with it-- 3-4 days in the hospital, two weeks at home, and everything back to normal. I think I would still do the same thing knowing what I do now, but looking back, I was naively optimistic.
So yes, I feel so very lucky, but I'm not denying there's a bit of a downside, too. That's how life goes.
Thank you so much BA. I was told it cannot be coiled it has to be clipped but shortly I'm having Cyberknife in St Paul, MN for AVM, I guess one step at a time. All this stuff in my head and I still feel like the same person so it's hard to believe.
BA said:
I have difficulty concentrating, am easily frustrated, not as sharp as before. I've had 2 sets of neuropsychological tests since surgery documenting the declines. Scores considered inconsistent with education level and professional achievement (I'm an MD). I have balance problems.
2 aneurysms located at an arterial trifurcation. Not eligible for intravascular treatment due to size and shape. Difficult, long surgery complicated by seizures, much more time in ICU than planned, etc. etc.
But the outcome is much better than finding them when they bled. I had a terrific, talented and very supportive surgeon. I'd have surgery again, even knowing what I know now.
karenrae said:
I'm sorry BA but may I ask why don't you feel like the same person after the surgery? Where was yours located that it made it easy for you to decide on surgery? I'm going through this everyday wondering what to do. It's been almost a year since diagnosis and I think about it day and night but I'm just as afraid of saying yes to surgery and coming out "not the same person" as I am to live with it wondering if and when.
BA said:I'm lucky. Aneurysm found incidentally. Surgery and recovery were very difficult. I've made peace with who I am now, which is not the person I was before surgery. I had no trouble deciding for surgery. Of those who have ruptures, 50% die. So I'm very lucky the aneurysms were found and treated.
I had a craniomoty almost two years ago for a leaking Anuerysm which was clipped and then obliterated. I have another Aneurysm that is being watched. I go for a CAT scan every 12 months. I could be hit by a bus tomorrow. So I do not get myself worked up with such questions. I would be wasting my time feeling sorry for myself. I mourned the old me and have come to accept and like the new me. Every day is a gift for which I have been blessed.
Penny,
Several posters have mentioned the new vs the old. Could you kindly elaborate?
There are things I do not remember, I used to be an A personality, my sense of humor is not the same, I can no longer multi-task - I have had to relearn thinking and how to go about problem solving ONE STEP at a time. I do not like crowds, loud noises or stimulation overload, so I carry dark glasses and ear plugs. It took a while for me to accept me as I have become. I really like the new me and I love life!!! I now kayak every other day five to seven miles. It makes my spirit soar with all of the wildlife I see.
What's different?
First, I don't want this conversation to scare anyone out of surgery who truly needs it-- it's better than dying or being left a vegetable. And many, if not most people who have surgery for an unruptured aneurysm do just fine, fine enough that they're not receiving emails asking about this stuff.
For me, short term after surgery, my scalp was numb, and although it was hair-sparing surgery, I had a fair amount fall out over the next few months. It is coming back, mostly, though. I lost some control over my eyelid and muscles on the upper side of my face on the side I had the surgery. This, too, has come back, but it's taken almost a year and it's not entirely the same yet. My vision is a little different; hard to describe how exactly, but I think it has to do with that muscle weakness and eye irritation from having the lid not working. I'm just using one eye more than the other, I think.
The seizures I had soon after surgery caused several weeks or a few months where my working memory was shot. I would tell people the same stories or ask the same questions multiple times. You could tell me a phone number, and I couldn't retain it to write it down; that sort of thing. I was slurring words, I couldn't find words I wanted to say, etc. I have advanced degrees and do writing and consulting for a living so this was pretty devastating. I am relieved to say the brain heals, though, and I am probably 85 or 90% of pre-surgery now. But I still feel like my memory, processing speed, and ability to focus are slightly worse than before. My writing is just not as good as it was, either, although I was not working steadily, so it's also a matter of being out of practice. My balance has never been great, but that too, was extra-terrible after surgery & seizures. It has improved a lot over the year since, but maybe not all the way back to where I was before. I do think there are exercises and therapies that can help balance, so maybe I just need to get into tai chi.
My stamina is not what it once was, in exercise terms, but also just in terms of ability to go through a long, active day. I am being much more careful about getting enough sleep. I have never been good with crowds or noisy environments, but now I go out of my way to avoid them. I lost some physical strength in the recuperation process, and I am trying to get it back now.
Also, my outlook is different. I am beginning to realize I'm not a spring chicken anymore and no one lives forever. i am trying to fully appreciate all I have, to love more actively, and accomplish a few things. I may still live to 105, but I got a glimpse of how that might not happen. I am more understanding of people with health issues, especially aneurysm or stroke, and I relate to the elderly differently than I did.
I won't qualify for much in the way of life insurance or long term care insurance. I see a lot more doctors a lot more often, and I can't rely on my old system of "I'm sure I'm fine, I never get sick."
So, in my case, it's mostly things an outsider might not notice, but it's more than I expected.
Lucky. Lucky to know that if I have any type of symptom, I will know to get straight to the hospital.
Unlucky, that I have this aneurysm.
But Lucky.
I feel very lucky. Mine was found while doing and MRI for another issue. Around the same time, the 23 year old grandson of a family friend died suddenly of a ruptured aneurysm. It does create a different outlook on life, and there is always a little bit of worry in the back of my mind, but I feel confident that my PED will help me, and I am hoping my first angiogram since surgery will show it was a success.
So lucky! I am 65 and my aneurysm was found incidentally while checking my brain for possible breast cancer metasisis. My local neurosurgeon referred me to a Dr at UCSF. Mine was about 5 mm and wide mouth so I would have to have it clipped but I could “watch & wait” or have surgery. I waited about 3 months, travelled, enjoyed the holidays, and then had surgery 1/6/2015. There is no longer a “ticking time bomb” in my head and I returned to work and family and couldn’t be happier with my decision and the outcome!