Hi I just want to know if there had a patient of AVM that not treated yet that live long.
I'm only 25 years old when I discover that i had Brain AVM.
I didnt have any surgery or any treatment, cause i cant have enough money for surgery.
I just want to know if I can live long..
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hello, my sister suffered from a brain avm that were undetected until it ruptured at the age of 29. she was an athletic girl and had just completed her annual physical exam two months prior to the rupture. the impact of the cerebral bleed in her case was severe and devastating, eventhough she received help/surgery within the first two hours of the rupture and survived. physicians likened the brain avm as carrying a time bomb in your head. my personal opinion is that your health trumps money anytime and to my knowledge there are alternative treatments to surgery.
as to your question: my sister's neurosurgery team mentioned that there are avm that did not rupture and mentioned that probability of rupture seemed to decrease as the person ages. please consult a neurosurgeon
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Kindly discuss with Neuro Surgeon. I feel AVM has to be treated ASAP as Brain Haemorrhage can happen anytime Blood Pressure increases or you have a Stroke.
Are you on any continuous medications to prevent Stroke?
Hospitals in USA will treat the patients if they are admitted and will not get pushed out of the Hospital if they cannot pay. This was mentioned at Critical Care Hospital VCU Richmond, USA. Neurosurgeon can make the decision based on CT Scans or MRI or CT Angiogram.
If there is bleeding in the Brain due to AVM then it could result in death.
I was 25 years on Nov 10th 2010 when at Night 10 PM I had a stroke. I was rushed by Helicopter Ambulance to VCU and was in ICU for nearly 3 months (MRSA complications). I was stabilized and had a Gammaknife surgery at Johns Hopkins Hospital Baltimore, MD on 25th March 2011. I have to wait for one more year to confirm that no more procedures are required on my Brain. I had Insurance and all payments to Hospital was made directly by Insurance. I relocated to India to be with my mother and get Cognitive Therapy during 1st week of April 2011.
Giridhar
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Probability of rupture increases with age if I am not wrong.
I dont think you can put any time frame on this scenario with AVM's. I was told i had a .5 to 1% chance of a bleed each year and that it would add over time...i had a brain hemmorhage in under 1 month after being told this.
Money doesnt matter when it comes to health and im sure if its a matter of life or death someone out there will treat you.
All the best & God Bless
Hi there, take heart my friend i am nearly hitting 60 and don’t intend going anywhere yet. When I was first diagnosed and treated I used to think about what would happen and when. Then I began to realise that life was passing me by and that I needed to worry less about what COULD happen in the future and more about what WAS happening now and to enjoy the present. I had my first diagnosis at 28 and here I am 32 years on still climbing my mountains of dreams. Keep smiling love Pauline x
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My opinion is
(1) You should treat it.
(2) Get your family and friends' support to get the funding.
(3) Discuss with your surgeon to work out some arrangement.
God will help you.
I had an AVM that ruptured. I never knew I had one until I am in my late 30s, which is 6 years ago now. I wished that I had known it sooner. I was fairly healthy before the rupture, and I am very fortunate to be typing this as I was literally an hour from dying.
We will all pray for you.
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That's very similar to what I felt. Life is passing fast, and I look forward to enjoy every minute of my time, and helping others make me happy. I try to collect as many 'thank you' s as possible each day.
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I was 25 when they found mine too. It is understandable how scary this is, but as other have said, getting in touch with a interventional Neuro-radiologist would be the Best thing to do. They may have payment plans that can help you our, because AVMs completely untreated can be SUPER dangerous. You don't know, if it were to burst what sort of damage it could cause. Mine is in the Right occipital lobe for instance, so if I kept it instead of having the embolization and cranotomy, Had I suffered a rupture and had a stroke I would have lost half if not all of my vision. The Drs speculated that would be what was hardest hit. Though I would still most likely have some of the after effects of a stroke. But every person is different, and every AVM is different, which is why you NEED to talk to a Dr about this.
I was only 26 when mine ruptured. I am extremely lucky to have lived through it. You need to take care of this immediately. I lived, but without much use of my left arm an leg. I am now 65 years old but had to drag a leg around all my life. A year after the two surgeries I asked my doctor how I was doing since I had survived a year. He said, "So far, so good". Meaning, of course, just take it a day at a time and thank God you made it to another day, because there's no guarantee. On the question of money, call the local university associated hospital and speak with the social worker or finance office. Call your city welfare office and find out if a program exists to help pay for the procedure. Apply for SSI or SSA because a potential death or permanent disability may allow you coverage under Medicaid or Medicare. Do this today.
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My husband was diagnosed last May with his AVM. We have seen two neurosurgeons and both have said the same thing. It's a Grade IV and located deep in his brain near the brain stem. He was 40 years old when diagnosed. Surgery isn't an option at this point as it would be too risky. Embolization isn't even an option right now, nor is radiation as it's too big. My suggestion to you would be--go to the Dr. and find out what your options are. You won't be turned away!!! If you can have surgery, go for it! I just wish we could.....
Where are you living? my Daughter had a bleed getting the AV glued, she has them in her brain stem, just been told they can not do anything else for her here in Ireland, the doctor has sent her files over to Shefield in England to see will they do something for her, she is only 26 years old and as far as i remember the older you get the more chance they have of bleeding. How did you find out you have them,and what is your doctor saying about them, if they can do something for you please try and get the money up to have they treated see will friends and family fundraise for you, dont give up my thoughts and prayers are with you
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Hi Mary,
It all depends on size, location, symptoms etc. Not all avms are created equal or treated the same. Get your neurosurgeon's opinion and get more opinions until you are satisfied that you tried all the options. My avm was not diagnosed till I was in my 50s, I had no symptoms except maybe migraines. I was probably born with it and some people live to be lots older and the avm never ruptures. I had mine removed. Keep researching and talking with the specialists.
Bless you,
ddecker
Hi Mary,
I would like to say: I agree with what all of the others have said. Avms are like a time bomb. We never know if and when they may bleed.
However, my dr. had a another patient that had an avm the size of a soft ball in his brain. The man passed away in his 70's from a heart attack. His never ruptured. So, I would say it is possible to live with it. I was told that mine (I have two small ones) are at an 80% chance of rupturing and I'm still here too (I'm 50) but, I have problems from mine.
Perhaps you could find a job that has health benefits and then get it treated. Just a thought. :)
Ben
Hi Mary. I noticed you live in The Phillipines. We have over 50 other members who live there too. If you go to Members at the top of the page and do advanced search you can find their profile pages. I know at least one member on this site who is 71 years old and another who is 80 plus years old! I hope this info helps!
In my case, the neurologists found the AVM in my Brain around 7 years old. After operating on the mass, they said that I can live a normal life. I hope that helps.
Did you tried to contact any NGOs for funds? I heard some charitable societies working in India. Please do something every life is precious than money.
Hi, Mary,
As you can see by the responses you have received, there are many of us who understand your fear and are here for you.
I am 63 and my AVMs were discovered last year. They think I'd had them for 28 years. My surgeons made the following comments:
Two described the first AVM found as a "ticking time bomb", as they did yours. It got my attention and terrified me.They did two unsuccessful embolizations that identified many more AVMs/AVFs, then told me that surgery was the only option.
I then met with three neurosurgeons and got three different opinions about how to approach the problem. I strongly suggest that you get several opinions on your AVM and how to approach it.
The neurosurgeon I was fortunate enough to end up with told me a few things that may be important to you:
1. Every AVM is different. (So the specific experiences any of us have or have had may have no relevance to your AVM.)
2. Some AVMs do not need to be treated and are unlikely to ever cause problems.
3. For those that are problematic, the likelihood of rupture increases about 4%/year. In my case , my AVMs had been "brewing" for either 62 or 28 years when they were discovered, so, in either case I blow the lid off the statistics. At 25, you probably think 63 is ancient :-), so I lived a LONG time with my AVMs. I just didn't know.
If an MRI was done to diagnose your AVM. I would suggest getting copies and talking with several surgeons. In addition to giving you potentially different opinions, they can give you information on available services or approaches if you cannot pay for the treatment. Like the others, I really think you shouldn't ignore this.
Best wishes for every success, Mary. We are all here for you!
Susan (Mother E)
Hi Mary - I had a brain AVM that is linked to my HHT diagnosis, and was successfully treated in October of 2009 in Toronto, Canada, when I was 45 years old. Reading a post like yours breaks my heart - in Canada we have universal healthcare and all I can do is encourage EVERYONE to work to bring a similar system to your country. Healthcare is a right - a rich country like USA should have universal health care. (I know I'm not telling any of you anything you haven't heard before - except to say - don't let the politicians try to tell you that our system here in Canada is a nightmare. It is NOT. It works, and it works well. We have world class healthcare professionals and facitilities...fight for this in your country.
It sounds like you have been given some great advice from fellow Americans with regard to getting treatment, so I'll keep my fingers crossed for you and pray that your journey is filled with successes and that you have many years of love and happiness and all the good stuff ahead of you. /pat
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Mine ruptured last year at the age of 32 and I think if I had the opportunity to have known I would have had it removed but like other people are saying you need to discuss this with family and a neuro surgeon. Good luck with what ever you decide.
Carl