my huby was born with an avm, but was fully diagnosed at 47, first surgery was at ucla, cost aprox. 75000 usd, since two parts of the avm remained after three years a second surgery -stereotactic embolization- was needed, it costed 3,000 usd since he had it done in Mexico City, the exact same operation. He is doing great! much of the damage that was supposed to never go away, has. The danger of dying or having a stroke is gone. So if he quits smoking, looses some weight and exercises there is no reason why he should not live to be 100
Yes, my twin and I both had AVM's, but she died of a glioblastoma (brain cancer). We didn't see that coming as she was being treated for an AVM bleed. No one can predict any of this, so live life to the fullest while you still can.
God Bless
Mary, my AVM was diagnosed 38 years ago when I was 24. At the time the surgical options weren't as great. I decided to wait in hopes that new techniques would come along. Any brain bleed can be fatal, but since my AVM was in the occipital region that affects the visual field, not sitting somewhere considered more dangerous, I decided it was worth the risk to leave it untreated and hope for better options. Over the years (decades) I was careful not to exert pressure or strain the vessels in my head/brain (extreme lifting, pushing, etc.) and to avoid meds that increased bleeding or blood pressure (birth control pills, certain cold medicines, etc.). However, at age 57 my old, ancient AVM finally ruptured, probably due to severe coughing from bronchitis. Looking back, I wish I had treated my AVM BEFORE it ruptured. I had consulted with docs a few years before the rupture, and knew better treatment was there, but the neurosurgeon I saw said at my age the chances of rupture might be declining and I might just leave it untreated. Treatment without rupture would have resulted in a lot less brain damage and a less traumatic hospitalization. While my AVM did not rupture before the better surgical treatment were available, I now know it was a big risk to not treat it when I could. Once you know it is there, and if your docs believe it should be treated, you are better off taking a chance with preemptive treatment than dealing with a ruptured AVM. The bleeding and subsequent blood clots will naturally affect a wider area of your brain. Talk to your neurosurgeon, clarify what is recommended for you, and seek advise and help with ways to fund your surgery. It must be terrible to worry about how long you will live. You need to work with your doctors and find a more hopeful path. At age 61 my AVM is now gone and no longer a threat to me. I hope the same can happen for you. I wil keep you in my thoughts and prayers.
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My neurosurgeon told me that No one ever dies at 90 of an AVM hemmorage! H told me an untreated AVM will almost surely rupture before always rupture long before old age... Not meaning to freak you out, It was just an off hand remark my neuro made, while I was lamenting my bad luck of having a bleed at 39 !!
Maybe that is true, but I think it is more that we die of other things first, like my twin dying of a cancerous brain tumor. There is so much conflicting information here. Confusing for sure.
I was diagnosed at age 25 was given a treatment of radiation 2 yrs after diagnosis in thr right frontal lobe was originally deemed 2 be inoperable. Suffered a bleed 2 yrs later I never had surgery. I just live my life 2 the fullest. Docs sed 2 avoid stress, alcohol n quit smoking.
I haven't changed my lifestyle at all and Life is good I turned 50 in December. Attitude is half the battle i think if you are positive you get back positive.
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Hi, my brother has a similar situation. He had his first hemorrhage 10 years ago, 2nd one in 2008, he is now 27. He was lucky enough not to have any long lasting effects; he’s totally blind in his left eye. It’s a frustrating feeling when you hear that it’s inoperable, we seeked a different opinion but got the same answer. Are you content with the answer or still struggling with it?
Hello Mam Lisa,
I'am living at Philippines,
I first discovered having avm when i feel intense headache and back pain. I also had vomitting.
my doctor suggest that i need to have surgery.
But it cost too much,
It also not covered in my health card in my work.
I just want to assured my self what were going to happen if i didnt had surgery.
Thank you for all the advice that i get...
I will try what ever i can to survive...
GOD BLESS us all...
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Hi there! I had similar symptoms as the ones you are having now. The vomiting horrible head aches and a fever right before my AVM ruptured. I had not had my AVM removed yet. I had decided to try RadioKnife surgery. It is for smaller AVM's. My AVM actually got bigger and I ended up in a helicopter to a hospital to have it removed. Of course it is scary to have to make that choice. I did have to have speech therapy. But, I am still the same me. I no longer get headaches. I do have to take medicine for seizures that I also got from the AVM and although they removed it I still can have seizures when I don't take my medicine. So I always make sure I do I have not had one in 10 yrs. I am so happy I had it removed. I am so much better now.
Hi, Mary. I bled at almost 20 years old (1975) At the time doctors said it was a berry aneurysm....a fluke. I started having some symptoms that sent me to the ER in October 2010. Neurologist ordered CTA and I was finally diagnosed Janurary 2011. I am 56 years old now. Like you, I can't really afford to treat BUT a group of neurosurgeons volunteered to do it FREE. HOWEVER, they said the likelihood of a bleed goes down with age and that at my age the risks of surgery were greater than the risks of another bleed. So I decided to leave it alone. Neurologist says my AVM shows signs of calcification which can shrink it and on rare occasions, close it off completely. So I am having annual CTAs to watch it. I would shop around for a neurologist and neuro-interventional radiologist. Get all the info you can on size, location, risks of bleed and procedures. Sometimes med centers will do it for free for research and educational purposes. Maybe you could find one of those. In the end, it is an extremely difficult but personal decision we each have to make
there is only a 10% death rate for frist time bleeders with avms. Do you know where yours is located. Mine ruptured last month. I have no insurance or money to pay, but I am getting treatment. If you can get an apointment with a neurologist, be open and honest. You might get some help. Also reach out to the goverment their is ome help out there, but it does take some digging to get it. You are in my prayers sweet girl:)
I was diagnosed with AVM in right frontal parasagittal..
I'm sure this is old I apologise. AVM is a scary thing. having said that,nothing to toy with. They are treatable and more advances happen everyday. vHJospitals will make arrangements. Get help. I hope you are already on the mend. I went almost 60 years before mine were found. gGood luck and Gods' spped with your journey.
Jim
I was reading your story and it sound a little like mine. I have been to the Toronto avm clinic and have had a group of neurosurgeons tell me that my avm is too big and too deep that they don’t want to touch it. I just wanted to know if you have seen more specialist and if you have been told differently from other doctors?
I had a bleed 20 years ago and did not have surgery. One of my many is located on my brain stem (the one that bled). Surgery was risky in that area. I have MRI's once a year, and so far, so good. Twenty years later, I am fine, healthy and enjoying life to the fullest. My twin sister also had two bleeds. She recently passed away from brain cancer, totally unrelated to this. The silver lining is that you will appreciate life more and also that you will hopefully avoid stress in your life. It is not a death sentence. I think of it as a wakeup call. Enjoy each day. If you need the surgery, you should have it. There is a way. No one should be left behind because of financial hardships. I will be praying for a quick resolve to this. I am sorry that you joined our club. It is not fun to have this hanging over your head, so to speak, but life can still be full of wonder. Enjoy and God bless.
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From what I understand you have a good chance to live long but you may have a bleed at sometime in your life.
My congenital AVM burst in 1972, when I was 26. I just turned 67 in August. I had a Cat Scan, with & w/o contrast in September of this year and no new bleeds were found and no additional treatment is needed, other than seizure meds for the permanently abnormal EEG. Point being, get treatment if medically possible.
Mary, my AVMs were undetected until I was 62. Statistically, I was WAY past likelihood of rupture, which I was told increased about 4%/year. I was incredibly fortunate and did not have a rupture, but, as several people have said, there's no way of knowing when or if these things will rupture. Many people may live very long lives without ever knowing that they have AVMs. However, the stories of young people with ruptures are too tragic to take a chance. When mine was discovered, two neurosurgeons described the initial AVM as "a ticking time bomb" - got my attention and I was in surgery within a week, without interviewing any other surgeons or asking many questions. The first guy in my head was a bit sloppy and severed a nerve root, leaving my skull permanently numb, but he probably saved my life. (Being an official numbskull is a small price to pay for breathing.) I'd join those who strongly suggest that you talk with surgeons until you find someone who will treat you quickly, regardless of your finances. There's surely someone out there who will take care of you - perhaps a surgeon who is not yet "rich and famous" who will help you to build his reputation. Best wishes for every success, Mary. There are a lot of us out here rooting for you!
Susan, haste and looking for a surgeon with little experience are not things we generally recommend to our members. The answer to whether a cerebral avm should be treated right away is not an unqualified "yes" or "no," but "it depends." It is a certainty, however, that more experienced surgeons can offer better outcomes when surgery is indicated.