I found out about my AVM alomst a month ago. I get freguent headaches, my neuralogist believed it to be migranes but sent me for an MRi and my AVM was found. So far I’ve seen 3 neurosurgeons and had an angiogram. I was an active 37 yr old mother of 2 very young daughters before all this began. Now thinking about this makes me unable to function. I don’t want to attempt to treat my AVM and end up with brain damage. My visual field can be comprimised with either gamma knife or surgery. I am inclined to wait and see and pray for the best- it may never rupture no? I want to ‘forget’ about it. I’m wondering if there are others out there that prefer not to treat and are going on with their lives as usual?
Our son is 15 , he was diagnosed w an AVM in the cerebellum last August. He has had several embolizations and we were set to do surgery but after really learning of the complications (permanent disability , coordination, motor skills ect) we have decided to wait and pray that he is able to function each day. It is very tough to do so but the complications would change his life instantly, of course a bleed would do so also. I recommend getting at least 3 opinions on recommended treatment. Our prayers are w you
Hi Heba! You are in the same boat as me! I found out mine about five years ago because I had a car accident & that’s how they found it. Mine has never bled, but I get occasional migraines/headaches (like today have had one since 8am!). This is very frustrating because mine is too big they say to operate & have been told to just leave it alone & be monitored. I was told that there is a very low chance of anything happening-but it’s the fact that you know it’s there! I get told over & over by family & very close friends who know to “just forget about it” but how can you? Every headache I get or something slightly off I worry it’s my AVM. It’s hard to weigh the options of surgery when I am perfectly fine & to know there is that risk that way that I will have more complications than if I were to leave it alone! I almost have to just convince myself that I am fine & don’t have it (I almost wish I didn’t know about this since I was told it was inoperable). I am hoping to go in for another opinion with a new neurologist either later this year or early next year. If you ever want to chat email me-I know what you’re going through!!
Hi Heba,
I, too, am --for the moment–choosing to wait and monitor. I’m 52 and have had the AVM all my life. It’s large and in a bad place for treatment, but there are lots of doctors who advise treating it even tho Gamma Knife would certainly cause neurological deficits I do not have now. ONe neurosurgeon pointed out that I am neurologically intact, have a good life, and have made it to 52 with no bleeds–I’ve beat the odds, in other words, altho I know there’s no guarantee what will happen tomorrow. I’m not against treatment–but for now I don’t see why I should interrupt a good thing.
Libby
I found mine due to a seizure, no bleeding. The neuosurgeon was inclined to leave it alone, the Gamma knife expert, gave me the statistics. My wife was get it treated now, so I did, no after affects so far, as My God is watching over me, I turn 52 in 6 days. For me I have a 6yr old son and wife, so that factors in. The main danger is total rupture, which generally results in death.
You just have to pray about this, listen for God to give you peace about treatment or no treatment. Then just live your life as only God knows when you are going to leave this place on Earth. You have no control in this either way, if you treat it maybe it is all good or maybe you have issues, if you don’t treat it maybe it never bleeds, but then maybe it ruptures.
The statistics indicate that most of these don’t bleed and most people don’t even know they have the AVM.
Keep an eye on it, listen to your heart and God and live your life no matter what decision you come to.
You must find that inner peace with this and not let it control your life.
My prayers are with you
Hello Heba,My name is Sylvia.Where do I begain??My first AVM ruptured in 1990,my second 2001,I have three that haven’t ruptured.I’ve NEVER had surgery.My are very deep.Yes I’m disable,yes I have headaches…every day,yes I have vision problems.Can’t do math anymore.Long term and short term memory loss…note pads help.I do drive…a truck and a scooter…don’t shift gears,LOL,ride a horse,cook an not burn the house down,LOL.It was very hard in the early years.I had to learn to live with my disablities.The MOST hardest was learning to live with the fact I WAS DISABLE…SICK.I’m not Disable I’m SICK.I don’t want surgery,I do very well without it.My daughter did have surgery on her AVM(she had no choice) an she’s in a wheel chair,I take care of her.Her one AVM was near the brain stem.My are not.I truely beleive we can do well without surgery IF we have a choice.I wish you luck and really talk out what you DO WANT with others.AND YES THEIR IS LIFE AFTER A AVM COMES INTO YOUR LIFE.
Hi Heba. just read you post. I too am in a holding pattern concerning what to do about my avm. i will say though that the symptoms are so severe for me i may not be able to put things off much longer. i have severe headaches, and a constant pulse or heartbeat with lots of pressure feeling in my head. these things are disrupting my sleep and i usually can only sleep for the time my body essentially needs. I’ll keep you posted if and when i make a move on this. Keep up the faith and hang in there as i am. Carla
Hi Heba,
I’m also 37, 2 beautiful daughters…got diagnosed with just an usual headache and i decided to treat it. But that just could be me that I can’t live knowing about it and not doing anything.
I wish you good luck in making that decision which is best for you
My daughter was 16 when she had her bleed. She had headaches that came and went perhaps two years prior to the bleed. They were never severe or sustained enough for us to investigate via an MRI, and there was no sign preceding the bleed that anything was worsening. How would you be able to tell the AVM was ready to rupture? Truly, you don’t want that thing blowing inside your head. Yes, gamma knife or surgery could result in some damage, but a ruptured AVM would cause more. On the basis of my daughter’s experience I would go with getting the thing resolved. We are now about 3.5 years out from her bleed and subsequent gamma knife. The initial bleed resulted in pretty severe speech and memory problems and right field of vision loss. These things were therefore present before the gamma knife which was done 6 months later. Field of vision has improved. She no longer has the rather severe speech problems she had at the beginning. Now, speech deficits and memory issues affect her ability to easily do academic work. College is difficult but most people notice nothing unusual about my daughter. I think she notices the stuff more than anyone – things like forgetting what you’ve read after reading it, remembering things you studied, etc. Bottom line: you can’t watch the thing 24/7 and when these things go, you can’t control how they damage surrounding tissue etc.
Hi Heba. I too was opting to try and learn to live with it. I a 63, never new I had my AVM, just went thru my life dealing with migraines, ear problems and of course the noise in my head. And one day my blood pressure (which I’ve been having problems with for about 10 years) just soared after I got up from a nap. I Had not been feeling well for several days. Then I couldn’t stand without falling over. My sister rushed me to ER and after many tests they found the AVM. the neurosurgeon said because of it’s size surgery was my only true option. It’s very, frightening and scarey. I am a strong person and said ok I can deal with this. Well since the day to ER I have serious headaches, pressure, heartbeat and pulse behind my left ear. My primary care doc basically said learn to live with it. Then I met an angel. I went online and picked out a neurologist and went to see him. He knew exactly what I was experiencing and told me it really needs to come out. Here’s what he asked me. “Do you have faith?”. Yes I do i say and he told me to go home and tonight pray for help in making my decision and it would come. And it did. I am going to make another appointment with my neurosurgeon and schedule it for January. Lots of things going on in my family to need to put it off until then. But you know what, I feel really good and optimistic about my decision and really am looking forward to it now. Everything will be alright. Keep your faith and pray for help in your decisions. It works. Best of luck to you and I’ll keep all posted when I do have my surgery. Love ya loads, Carla
Hi Heba… i found out about mine almost 3 years ago… i have had no symptoms of any kind. i even served 20 years in the air force and it was never found. my doctor in Las Vegas said to just watch it because it hadnt bled yet. when i moved to the atlanta area i went to see Dr Barrow at Emory University (who is an expert on AVMSs). he said he didnt expect it to bleed any time soon but over my lifetime (i am 48) the odd are that it would. surgery was too risky so he recommended gamma knife. it is located in the occipital/temporal lobe and could have affected my vision… but hasnt. after 8 months, i am doing great (was back to work in a couple days after surgery) and my AVM is starting to shrink. Dr Barrow said it best… it might not ever bleed but if it does (and the odds are that it will) , it could be life changing or life threatening. i am glad i did it… good luck to you!
i think it all depends on you and your symptoms. if you have no symptoms then treatment of wait and see is probably acceptable to you. but if you have frequent headaches that interfere with your life and your children you have to weigh the risks vs the benefits. the complications are with any surgery or any treatment options you choose. Just remember when choosing no treatment the avm could suddenly rupture without any symptoms or warning. and then the ability of the surgeons to help and save the good brain tissue diminishes quickly. so you have to weigh for your lifestyle what’s worse. the potential life-threatening rupture in an uncontrolled setting or the complications or rupture during treatment? its a hard decision for many of us. but we each make it for ourselves and what we can handle.
I had mine (L frontal) treated 25 years ago and so far so good. I still have headaches but there was no serious neurological damage. Unbeknownst to me I had HHT and later passed it to my children.
Now I am faced with similar decisions with my own children. My 2 girls have had gamma knife surgery for multiple cAVMs and recently had another angio to see the progression.
For some reason I can’t bring myself to hear the results. I know that some of the AVMs are inoperable, gamma was our only option, and I don’t think I want them to go through that again or have any more radiation.
On the positive side, they had minimal side effects from the gamma, starting about 6 months post op. Mainly nausea and headaches. The nausea got pretty bad at one point but subsided about 1 - 1 1/2 yrs post op.
My belief is to trust your gut first and your neurosurgeon second. Our pediatric neurosurgeon is revered in our household but at the end of the day it’s mom that has to look at their little faces and answer for these decisions.
I do recommend that you find a neurosurgeon that you feel is capable, that you like, and that you trust. Don’t rush into surgery, build a relationship with her/him so you will feel more comfortable about the medical advice they are giving you. Seriously, I believe this is the most important thing you can do for yourself and your family.
Hey Bree, I was exactly in similar boat about 3 months ago..My neurosurgeon gave me the stats that its about 70+ % chances of bleed for your age group(30-40 yrs) during the lifespan with your condition (where there were absolutely no symptoms other than some headaches). That statistic didn't change my decision to go and treat it as I wanted to get it treated from the day I came to know about it. But I can definately understand the dilemma. Good Luck with your decision and hope all work out well for you. Best Wishes.
Hi Bree-I have known about my AVM for over six years now (I just turned 33) & only found out due to a car accident. My neurologist told me I had it since birth & he said that since I have not had any issues with it at this point in my life to be just monitored. I think there is a lot of conflicting information regarding AVM's. Since I have a very low chance of death if my AVM bleeds I am content at the moment knowing that if I have a bleed that they know what to do with me & I will deal with it then. Right now I am living a normal life & it scares me more to go into surgery and mess with it & I could possibly have more issues than just leaving it alone. (although don't get me wrong-I have bad anxiety when I have a headache or something doesn't feel right-but I do a lot of self talk and try to stay positive) I had also talked to a different doctor earlier this year, after my neurologist, to try to get a better understanding of it & she had told me also that there is only the 3%/year & you're more at a higher risk if you already had a bleed or have other symptoms already with the AVM. It's a very tough decision & my advice is to just do your research & get many opinions on your options, risks of surgery & risks of leaving it alone. Feel free to email me if you would like to talk-I've been dealing with this decision for quite some time now :)
Hi Heba
I have just read you post, I am 37yrs old and found out about my AVM July this year, my is 3cm Grade 2, so far I have no side effects except possible swelling behind eyes. So I am faced with a similar decision to you, do I leave it, have surgery or GK......My life time risk of a bleed is between 25 - 50%, my risk in surgery is less than 5% but its brain surgery.
I know what it is like trying to live with this and understand how hard it can be.
Keep me posted on what you decide.
Take care
Daniella
Hi christine, can you tell me what HHT is please? I just had surgery to remove my AVM and was told that it is not genetic and that it was highly unlikely that this would ever happen to my children…
Hi Heba. I feel exactly the same as you! I have a large Cerebellar AVM which has caused recurring Hydrocephalus. I got the first symptoms of Hydrocephalus when I was 12 and had a Shunt put in at 14. It was another 15 years before I was told that my condition was caused by am AVM. At first I was told the AVM was untreatable. And later they said they might be able to try Gamma Knife but that I would need at least 3 embolisations first. It is unclear whether obliteration (uncertain by any means) would also stop my Hydrocephalus. After much soul-searching I decided not to go ahead with treatment. My AVM is still unruptured and does not cause me much of a problem in my everyday life. My balance can be a little iffy but I don't suffer headaches, dizziness etc like some people. Like you I am scared that if the AVM is treated my quality of life could be worsened by brain damage. And I don't want to give up what I have now. I have young children too and I want to be around to see them grow up if at all possible. I realise that my AVM could rupture. But I have put my faith in God and will have to deal with that if/when it happens (and I pray it never does).
Hello All,
Thank you for sharing your stories and experiences. I apologize for not being very active on the website but I do have some news. In spite of my hesitation and desire to not have brain surgery, it seems that God had other plans for me. One of my friends insisted that I go see Dr. Robert Spetzer and Arizona, and visit her since she lives there. Somehow he convinced me that it was my best interest to have the surgery in spite of the risks to my vision. Six months later in May 2012 I flew to Arizona had two emoblizations and a craniotomy that lasted over eight hours. It took me six weeks to regain energy, my vision was altered [have a blind spot that I didn’t have before] but I choose to accept it as my personal Magic Show. The quality of life that I was concerned about risking has actually improved since the headaches are gone in spite of my less-than-perfect vision. My readings sore but I can so read and I can still drive to watch my children go. I feel very blessed in that things happen for reason. So my recommendation is: pray about it then accept and surrender to your destiny!
How wonderful, Heba! Thanks for sharing the good news!
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