Hi all,
So this is a question I never had the balls to ask a doctor or anyone. I was successfully treated for a cranal avm in 2005 with 4 embolisms and a crainotomy. I have a large amount of brain damage although it does not affect my daily life terribly.
Is it really realistic to expect a full life expectancy even after successful treatments? I mean, if you almost total a car and have it fully repaired, it still never runs the same.
-Chad
I have the same question, and I feel like a doctor will never give a straight or careful enough answer to it...
The body's different from a car because it can adapt and learn to regulate itself under new conditions, and I can think of three factors in favor of a normal-or-longer life expectancy after AVM treatment: You've been checked out and monitored by specialists, so you're somewhat safer from sneak attacks by aneurysms, tumors, etc. You may have made some lifestyle changes like quitting cigarettes or cutting back on drinking or doing physical and mental exercises to help with recovery, and that will cut your risk of other diseases too. You know that you're not invincible, so you take care of yourself when something feels wrong instead of trying to shake it off or wait it out.
What does everyone else think?
My two cents says if your AVM is gone, you probably won't die of an AVM. If you have deficits from it, that might cause issues.
My guess is more people than not WITH AVMs die from something else--some or many of them never knowing they had an AVM.
Ron, KS
I had the same question! But I didn't ask because I already knew I'd get the same "no one can say for sure" I'd get for every other question I asked. I agree with JH but I also wonder if any of the radiation (embos/scans/whatever other tests) would cancel out what quitting smoking gave me back:/
Yes it is very realistic to expect a full life expectancy. I was 28 and 6 months pregnant when I had my bleed and craniotomy. Actually, two AVMs were found and clipped. After delivery of my child, it took about six months for me to feel normal again. And I did ask my neurologist the exact question you are wondering. He told me life expectancy would be the same as not having the bleed. I am now 62 so it will be 35 years in September since all of this happened. I've had my ups and downs, but have lived a rather comfortable life considering. I do have left-sided weakness but have learned to live with that. I've also gone through a broken hip from a clumsy fall on my part and am a 19-year breast cancer survivor. I do have limitations though, or maybe it's just called getting older.
Yeah Connie,
That getting old isn't for wimps is it? I'm 62 as well. Chari's AVM showed up in 1991 and was totally gone in 1998. Thanks for sharing your story.
I went back to read your profile. We tried our first PBR (Proton Beam Radiation) at Mass General under Dr. Kjellberg in 1991. He died shortly afterwards. Your profile said you had "laser". Was it some kind of laser, or PBR? Just curious.
Thanks.
Ron, KS
why would anyone want to know that sort of information about this question? If theres nothing else u can do - no more embolisms, no GKR - theres nothing u could do anyway. We are all gonna say goodbye to this life one day, i would rather not have any percentage chance at all, be it AVM or not, and if theres nothing else i i could do, rather not think about it......just not worth thinking about it......
I didn't have the laser surgery. The morning I was to fly to Mass. General Hospital the AVM bled again. The night before doctors told my husband not to let a surgeon near me because of the location. The next morning the doctors had no choice but to operate. There were actually two AVMs. Since I was 6 months pregnant my OB doctor was there during surgery. There was a good chance I wouldn't make it through surgery, so he was going to do a C-section if I didn't, even though at six months pregnant the chances of the baby's survival was slim. Well,we made it and she will be 35 in December.
Back in 1977, there were no MRIs, just CT scans and angiograms. I was in the hospital one full week before doctors found the AVM(s).
Hi Chad - I've never asked this question to a medical professional, but a philosophy that resonates with me is to live your life like there is no tomorrow. No matter what is said about AVM life-expectancy, you could be killed by getting hit by a bus or something totally different tomorrow; that's why this philosophy of "life is short...focus on and do your important things (to you) first." works for me.
Boy have times changed! I was 13 weeks pregnant when I had my bleed, 20 weeks pregnant when I had the craniotomy. They never questioned the crani once everyone realized my chances of making it through the rest of my pregnancy without another bleed were pretty slim. A second bleed was too risky for the baby so we had the crani. There was only minimal concern when it came to the MRA, angio and 2 embos (radiation). There was no one in the O.R that was not a part of the neuro team, there were no O.B nurses in the room or anything. All I had was a second heart monitor, one for me, one for the little guy. I'm not even sure if anyone was put on call "just in case."
My baby will be a year old this August. I have a left-sided deficit and I discovered that (at least in San Antonio and in Corpus Christi, Tx) there really is no occupational therapist that knows how to teach a newly hemiparetic mother how to handle her own child with one arm. No one knew how to approach it! I was super disappointed in learning that. But, eventually you learn on your own. I may not be able to hug him wholly but I can hold him close enough to me to feel like a hug on the inside:)
Hi Chad. Carpe Diem. Seize the day!! I am almost 24 years post-bleed!
It is an interesting question I've pondered also from time to time. But I agree with Rich and Julie. No one really knows how much time they have. We've got to make the most of every day and have no regrets.
Hi All,
I appreciate Julie's and others' comments to the effect of "seize the day." I'm completely on board with that. Since I was successfully treated, I became a lawyer, became a ski instructor, and moved to New Zealand. I do what I want!
My impetus for asking this question now is purely practical. I'm 27 years old. What should I be saving for retirement? When can I retire? What should I be telling a serious girlfriend in contemplation of marriage?
You never know, yea yea, but you can still plan with a rationality. My post isn't out of despair. I don't know if I've ever felt a moment of despair in my whole life. I could die in a ski accident tomorrow and be content with a life well lived. But the people around me deserve to know if my odds are against old age.
Hi Chad. I am almost 54 years old. I have worked for 2 airlines and lost my retirement with both so I do not think I will be retiring for a while. Nor do I plan on dying anytime soon…although none of us are promised tomorrow. As you become older…you will discover that a lot can go wrong with the human body…not just AVMs. It is just my personal opinion but I would think the chances are more likely that you will live a long time because you are a SURVIVOR!
Kristi, I understand totallly what you are going through. It isn't easy, in fact it is a very difficult time for you now. I also had a two year old son at the time of my bleed. I had some physical and occupational therapy in the hospital, but to be honest just about the whole five weeks I do not remember. In the hospital I do not remember anybody offering anything about caring for a baby. My mother and father had to come live with me and my husband for about six months. That was a good incentive to try to do things myself.
I've read a lot of your posts and certainly do give you a lot of credit. You can do this. Sounds like you also have a loving and supportive husband. I sometimes would feel guilty because of things I could not do which I had to have my mother or husband do. BUT...I needed time to recuperate and strengthen myself as best I could and you do too.
I now have three grandsons. The daughter I was pregnant with has twins and my son as one boy. I now sometimes feel bad I couldn't walk and hold them as babies, but I was looking out for their own welfare. I do sometimes stumble and I can't take that chance while carrying one of them.
And it does get easier, just hang in there.
Sounds like you are doing great. I say live your life now as you would have before the AVM, if physically possible. Plan for the future!
hi barbara, this is a bit of topic, but what happened to your 2 jobs in an airline? What did u do? Do u still work now?
I think the biggest long term threat after treatment is the high amounts of radiation from all of the cat scans, embolizations and gamma treatments. The possibility of some type of cancer from this is increased so I try to limit my ct's and try to get mri's instead. However the danger from the radiation can take 20-30 years and the risk is worth getting rid of the avm.
Hi Jason - this is totally off-topic of Chad's discussion, but I just saw a thing about the dangers of radiation of television, sunshine, and CT-scans...I don't put a lot of credibility into the news (since I personally think that instilling fear is part of the news-business) until I hear someone else mention it. Since you did, I'll look more into it.