yes,
even though my right arms & leg are not comfortable
i m still living. since 1980. i m almost 52 now.
please, be brave,,,
pray for you...
I was diagnosed with an AVM on my brainstem when I was diagnosed at age 43. I did not have surgery. I have had an MRI every year since and have not had any problems. I just turned 62. My report says that I have innumerable cavernous malformations. If you need surgery, there is a way. You should not be turned down. Blessings, Deidre
Hi Mary, I’m a 25 year old AVM patient as well. I was diagnosed at the age of 18. I sometimes feel that fear of not living long as well. However I realized there are AVM patients of all ages. So yes we can live long. I recommend doing whatever you have to do it get treatment. I understand it’s hard because I too had troubles financially. My insurance would not cover one of my surgeries. I also had a very unprofessional ER doctor tell a scared 20 year old me that I had a ticking tomb bomb in my head. That’s not completely accurate though because there are many people who live long lives with AVMs and they never rupture. Tge truth is everyAVM is unique and as we are all unique so it’s hard to say wether anyone one of us can live long. No one knows when they will die. It’s the sane with AVM patients. I learned to continue treatment, continue studying to fulfill my dreams of becoming a doctor, and live life. 
Also, we are probably all born with them. Many never have a problem. The term “bomb in a brain” came from a book written in the 80’s. I hate the term. The number that actually rupture is very small. Take a deep breath and enjoy life. It is in God’s hands. My twin sister, who also had AVM’s, died four months ago of a glioblastoma (brain cancer. She had AVM surgery last January. Life is meant to be lived to the fullest. Embrace it. Deidre
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I was 24 when mine ruptured. I didnt have insurance so I applied and got medicare and medicaid and they paid for everything. also I was told that there are people out there who have avms and dont know it and they never rupture but yeah,talk to docs
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Hi Mary
I have two AVMs, and I only found out about them when the first one ruptured. I was 15 when the first one ruptured, it happened while I was sleeping. The doctors gave me a few days to live. I made it through and six months later it ruptured again, I woke up with numbness in the right side of my face and realised that something was wrong. The doctors said that I will not live till the next day.
I was left being hemiplegic, but I lived. Today I am still alive, I am 27 now. I have a numb right half of my body, and my right arm and leg is weaker. I also lost part of my sight. I went for Gammaknife, and a few Embolisations, but I still have a percentage of my one AVM and I still have the second one.
I would say you should consult a Neuro Surgeon to give you the best advice on what to do. Don't take chances, your life is more important than anything. My 2nd bleed happened just after I was in hospital for an embolisation.
Good luck and all of the best!!
We share the same fate i believe, its been 10 months since the first rupture which I am not aware of until later when they found out that I have this AVM. To this date, no surgery or treatment, though my last visit to the doctor said "a surgery must be done, but with a warning, that there is a side effect like. he said that i might wake up without feeling my legs or arms" --- yes scary it is.
I am still working with the same job that I had, with lots of pressure and stress and manage somehow in keeping my blood pressure on normal level.... the only side effects that i am feeling to this day is having that like crawling something in my face...like an hair raising on the skin like feeling... and also my speech has been affected too... but manage to communicate with our clients --- but there is a big difference in comparison before the rupture. I have to modulate my way in speaking ;) ... everything is control...
Looking for ways to make it easy really... well good thing is... Good things are just around the corner ..:)
my husband Joseph rizzo had his first brain hemmorage at 36years old.
It is not operiable. he did have sterotactic radation
I forgot to mention Joseph is now 52
Hi Mary, I have an inoperable 6cm AVM and I will be 64 on August 14 so don't be too concerned and try to live life without the "What If" thought. Don't let fear take over your life! Otherwise you will forget to live. Embrace life and enjoy "Being" Never say "What If" unless what if is 64? and maybe a lot more!
Love and Good Luck to you.
Hi Mary,
I had a grand mal 13/04/1997. no previous problems
except the occassional migraine. I am 56 now, and cherish every day. I was scared and nervous at the beginning, that is only natural, I wrapped myself in cotton wool for a long time. BUT that wont stop anything. I think its about knowledge and acceptance. TIME is the thing that helps. My 15 year anniversary is this week. I am in a different place then you, I agree. I had already had my children, but I wanted to see them grow up, I think thats where I got my determination.
All the best to you. take care. Remember, TO TAKE CARE OF NUMBER ONE, THE REST WILL FOLLOW.
Amanda J
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Hi Mary,
I will be 50 in May of this year and was just diagnosed with my AVM in Jan. and my neurosurgeon doesn't want to do surgery now, he wants me to have MRI's every 6 months to monitor the AVM. As everyone else has said all AVM's are different. I would suggest to follow your doctor's advice and if it is surgery you can set up a payment plan with the hospital.
Mary,...
May I invite you to my group here on the AVM Survivors site,...
http://www.avmsurvivors.org/group/ruptured-avm-brain-bleed-un-treated
We would welcome your input, advice, suggestions and comments.
From what I know,...an AVM forms during a pregnancy as the baby is developing in the womb, (causes still unknown) so,...in all actuality we have lived with our AVM's for our individual lifetimes.
I am 57,...had my brain bleed at 55,...still untreated. (please see "my page" for details)
When you can,...see your physician and ask for the odds of another brainbleed,..it ranges from 3% to 4% annually (as in my case, but all AVM's are unique to the individual)
My advice right now is to read/research/learn and gather as much AVM information that you can. Information = Knowledge, Knowledge = Power, the power to make the proper decision for YOU.
I hope this helps,...
Your friend,...
William
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Hi marry, i have a friend who like me has an avm on her brainstem and she is doing well at the age of 65 which is encouraging to me to know that God has the last say! So remember that with God all things are possible! be Blessed!
Hi there well I am now 39 and found out about my avm at the age of 34 I have lived with this all of my life and didnt know about it, Is there no where you are entitled to have surgery at? keep on having regular checks at your doctor and have your blood pressure monitered, some people with an avm can live and not have any bleed but chances do increase with age.Stay positive
I talked to my neurosurgon last week and he gave me the statistics of an AVM rupturing and he said the chance of mine rupturing (as long as there is blood flow) go up 10% per year compared to an anerism which goes up 2% per year. If they get all blood flow stopped then the percentages quit going up. He said that's why when they discover one they try to react quickly to stop the blood flow because as long as there is blood flowing through the AVM you have a chance of it rupturing.
Hi I had a brain aneurism burst in 2006 I wish had known and had it fixed prior. from my point of view the week lost to have the surgery and the bills, beats losing my memory prior to the bleed and having short tern memory issues as long with a lot of other things (the Doctors did not expect me to walk out of the Hospital I’m a very lucky one in their words), if your aneurism ruptures there is no grantee that you will survive or be the same person after. I had Stereo Tactic Radio Surgery the risk from the surgery is small compared to the other alternative all I recommend is making an informed decision. and if money is a issue find people from your local area they have been throw similar experiences they may help by pointing you towards the right Doctor / specialist to charitable origination. all the best Gavin
Hello Mary. You will find many opinions on this question!! All I can tell you is MY experience as I am not a doctor. I was 55yrs (Young) when I found out I had an AVM because I started falling over due to dizzy spells and I had a CT Scan. Through those years, I gave birth to 2 wonderful children, had many long distance plane flights and lived life to the fullest. Now, I am 58yrs (Young) and fortunately for me, my Brain Surgeon did not charge me A CENT for removing a huge AVM, nearly 3 wks in a coma & 3mths in hospital, then 10mths in rehab. Of course I had to pay for the hospital but at that time I did have insurance.
I am sure that a decent Surgeon ( & hospital) will help you with the treatment you need. Also, not ALL AVM's rupture and as we say on this wonderful site, all AVM's are different! I wish you all the very best my young friend!
Hi Mary,
I was 35 when I discovered I had an AVM, I detertiorated quite rapidly and had a haemorrage while I was in the hospital waiting for surgery. I would encourage you to explore if there is any possible way that you could have the surgery, as it has been a long time trying to recover from state I was left in post haemorrage.
I will keep you you in my prayers.
Marina