I found out that I have an AVM from an unrelated MRI. I am 33 and at this point have not had any symptoms (that I am aware of).
Did you get any treatment?
Did you decide to be an optimist and play the odds with no treatment?
AVMs are just nasty. Both the potentials risks of the AVM and treatments are so variable. Part of me wants to just play the odds and go untreated.
Don’t Treat:
1) Live my life and never have a problem
2) It bleeds and causes death or disability
Treat:
1) Endure through treatment, everything goes great, and I live my life without any problems
2) The treatment causes death or disability
Thoughts?
My daughter didn’t have any symptoms at all until she had her bleed. She was fine one day, and had a hemorrhage the next. It was very surreal. Of course we didn’t have a choice about treating because of her age and already having a bleed. I think you just have to way all of the options, once you have all of the information about how much risk there is with what is recommended for your particular AVM. Also, you should get several neurosurgeon’s opinions, as they don’t all agree on treatment plans.
That pretty much sums it all up… And you are wondering HOW you EVER make this decision??? It is SO extremely difficult and stressful to go thru this. That is what we all know for sure. SO everything you are feeling right now, is normal and if it seems crazy to be making this decision, that’s because it is.
In honour of all those people on here who have “untreatable” AVM’s, I have to say that IF treatment is an option for you then you are blessed. You are also blessed to have found out about your AVM without a bleed. We had a nurse say to us once (with this look on her face that I’ll never forget), “Do you know how lucky you are?” because our son had a seizure and not a bleed. I DO know how lucky we are and I"m thankful every day.
I always look at this in this way: that I’m trying to do what is necessary to save a life…symptoms don’t really matter, your life does and I’m sure your life matters to alot of others around you too. BUT every person is different and you need to work thru this in your own time and in your own way. And each step that you take, leads you to a different viewpoint and someday you WILL know what the right thing for you is.
And I agree with Susan, get as many opinions as you need. That is so important. All the best, Dan. I hope you have a good support system around you.
We also were told by one neuro “You just won the Lottery!”, meaning the AVM was discovered without a bleed and only minor side effects.
Chari’s symptoms were leg getting numb ("I must have been sitting cross-legged too long), twitching in her arm (it was mini-seizures starting), intense brief headaches (“Hey, I’m 40, my body is changing”). Only after the AVM was discovered did she realize the pronounced bruit she had was related to the AVM (“I have always heard it and figured everyone heard the bruit sound when they were resting”)
As an aside, as she had embolizations, the bruit diminished until it went away–she had trouble getting to sleep–hearing the bruit had helped her relax!
As others had stated, it’s a tough personal decision. To us knowledge is power; Find out as much as you can about your kind of AVM (size, location, etc) and get at least two opinions from teams that have treated no fewer than hundreds of AVMs. Listen carefully to what the specialists are recommending, to potential side effects, and their guess (that’s about the best they can do really) at chances of a success. One question we found helpful was “If your child had this AVM, what would you recommend?” Most really reflected on that question before providing an answer.
There is a risk of getting more than one opinion. As someone mentioned, you might get two or more conflicting opinions. At that point, you have to sit down and do some really thinking. Who you pick to believe should be who you have the most confidence in.
Hope this info helps.
Ron, KS
Hi Dan -
My experience was a tad different. After three weeks of migraine pains, blurred vision, and dramatic weight loss, I went to the emergency room at Howard General to find out what was going on with me. I would get a CT scan, the doctors would tell me that they had found some bleeding in the brain and that I would need surgery, and then I was sent to another hospital (University of Maryland Medical) to find out why I had a brain bleed seeing that I did not suffer a concussion. I would find out a day later that I had a cerebral AVM and that would require a Gamma Knife. It wasn’t my choice at all, but I do not regret making the choice to go to the Emergency Room which would lead me to getting surgery because I probably wouldn’t be here today.
Just like everyone had said, the choice is yours, but getting two or more opinions would be good, and then take some time to ponder on what they tell you. Whatever decision you make, we’re here to support you.
All the best to you, Leslye
Hi Dan, I didn’t have any symptoms until it bled,felt great the night before…In retrospect if I had the option beforehand, I would have grabbed it with both hands,
best of luck with your decision,take care:)jmo…
So what do we do? Treat or not… 
I am scared.
Dan,…
In summary:
I had an AVM rupture/BrainBleed in 2008, had it been 1 centimeter larger, I would have had a craniotomy.
I was 55 at the time of my brain bleed, 14 days in hospital, with angiograms, MRIs and functional MRIs performed. Loss of some Long Term and Short Term memory, speech difficulities, vocabulary recall difficulities.
Per my neurosurgeon, I have 3% chance of another brain bleed in my lifetime.
My choices:
#1,…Do nothing, and monitor my AVM with scheduled MRIs.
#2,…Embolism and Gamma-Knife.
#3,…Embolism and selective AVM surgical removal/craniotomy.
With #1, Do I gamble, and possibly have another brain bleed and suffer disability and or death?
With #2, I know I lost a great deal of functional brain tissue/cells, with the AVM bleed. Do I want to risk the radiation procedure and possibily damage more brain tissue/cells?
With #3, Do I want to take the risk of surgery and the long period of recovery/and possible permanent disability and or death?
Right now,…I am healthy, and a gambler. At my age of 57, I have a 3% chance of another brain bleed in my lifetime,…that is a 97% chance that,…I WILL NOT,…have another brain bleed.
I’ll play those odds.
“Today is a Good Day to be Alive”
Well its like playing the lottery either way you can get burned! I hope you make the choice that you truly want to follow. Some days I’m pissed that i got treatment and other days i wonder if i gambled and left it alone if i would of had a bleed yet or worse die. Its so hard to choose but do what is in your heart!!! I had my husband and 3 yr old (at the time) to think about. Now i have gotten to see him graduate kindergarten and all the other big milestones that i might have missed out on. And sadly its been 3 1/2 yrs since i found out about my avm and just over 3 years since my last treatment. I’m still dealing with my avm as it is not gone yet! But any questions you have about my avm i will gladly share with you! Best of luck Andrea
Hi Dan.
As many have said above, I was also lucky to have found that I have an avm before anything occurring. Like you, I have a choice and spoke to many doctors. I can say each specialist will recommend their treatment procedure, and in the end, YOU will need to absorb all their information and make a choice (for you and your family).
I am also playing the odds and decided to be treated with radiation. I could not be hospitalised for 3months and who knows how many months after that for rehab, since I need to keep working to maintain my family financially (single income). There are lots of risks associated with cranio surgery too - and believe it or not, the main risk is caused by infection from surgical implements, not by bleeding. Surgery was simply not a choice for me because of those reasons.
I want to share with you a favourite quote:
“You are the master of your fate, the captain of your soul, because you have the power to control your thoughts”
Think and choose the option you think is best for you and your family. Lots of information can assist you to select your option wisely.
Good luck.
Jim
PS. It has only been 6 months since radiotherapy, and last week an MRI showed it shrank by 1mm. Still a long road to recovery…
Hello Dan
Well your in the right place. I read every post here and some great veiw points are here. You are in a place that few AVM people get. You are in a place were you get to make a life choice. Give your self some time to understand your AVM (location, size, class). It’s your AVM.
After you have a full under standing of your AVM make a life choice with a clear head. Treatment or no treatment.
If you pick treatment. Find the best neurologist in your area first. This neurologist will have other AVM case’s he has worked with for years. Next find a thearpist (Neurologist should know one) that you fit with and that will talk to your neurologist. The reason for this is reaction to medications.
Thearpist has to be a LMFT, LPC, PHD, or some thing a long this line. You can have this all worked out in less then two mouths. Get at lest 3 visits in so you can get to know you.
MOST important part**
Find a vascular brain surgeon that works with a multifaceted surgical team. I don’t care it is on the other side of the US or not. YOu only have one brain! Find three or four dif. surgeon. at this point you have done your home work and the surgeons have done thiers. If you get 2 or three diffrent surgeon teams that say the same thing I would sugest going with that way of removing the AVM.
Key word here is multifaceted surgical team. Thier are tons for bad DR.'s !!! The realy good ones work with a team.
IF you do not wish to have the AVM removed/ treated. find your self a good Thearpist. A good neurologist. Still find a vascular brain surgeon in your area that will know your case if you end up in the ER because of a bleed. Put a medical card in your walet that says I have an AVM in my brain and the ER you need to go to. Put a set of medical contacks in your phone.
What ever road you pick stick with it never second guess witch road you pick.
I hope this hit base with what you had been looking for.
You certainly have the ‘don’t treat’ and ‘treat’ parameters distilled to their essence! But of course, that essence is an oversimplification because as you have probably figured out by know, the odds of each outcome are uncertain and, as you put it “variable,” but also determined by hard facts on the ground, as they say. For instance: location of the lesion, size, vascular configuration, operability, embolizability, and so forth. And as you probably also have learned, by the standard probability formula for estimating the chance of mayhem, your relatively young age translates into a higher lifetime probability of bleed or rupture. I, like you, had an AVM discovered from an unrelated MRI and with no symptoms – a so-called “incidentaloma” – but I am almost 20 years older than you so the lifetime odds of difficulty were lower. Even so, after consulting remotely (sent them film and consulted by phone) with four different neurosurgeons in four different cities, I opted for treatment in large measure because the don’t-treat odds of mayhem are high, and the risks of treatment in my case given a favorable location and orientation of the lesion (your treat #2 outcome) were much much lower.
You may (or may not) find it helpful to peruse my chronicle of my experience (which began with an incidental finding, as yours did, in November 2009, and culminated in a successful craniotomy in March 2010) archived here: http://is.gd/dy5UK
Best of luck (and wisdom) to you.
All my life my legs fell asleep very easy… and i was very dizzy even as a small child. but it was sumed up to being a cry baby…
I went almost 27 years without any symptoms. Then one day I was fine and then my head started hurting very very badly. I was rushed to the Emergency Room, and almost died because it was a very major bleed. I wish I had known in advance to get it treated. In my opinion, I would be proactive and get it taken care of now. true, it may never bleed. But, when I had my bleed I didn’t know what was happeneing and was driving in the car with my kids. I could have crashed and we all would have been hurt, but luckily, I stopped driving in time.
i had no symptoms before it ruptured
Dan,
My AVM was symptomless for 47 years and first presented itself to me by causing the entire right side of my body to go numb for about 6 minutes. A significant experience as I was driving my car down the highway at the time. Along with it came THE WORST HEADACHE I HAVE EVER EXPERIENCED. But still NO BLEED.
Long story short - 3 different neuro’s referred me to the ONLY NEURO who had worked in the part of my brain where my AVM existed. My surgeon explained the options. 1. Leave it alone, experience more seizures (what the numbness was considered) and take a chance on a rupture. Significant as my AVM was 4.5 cm, meaning just a bit bigger than a golf ball, and a rupture would probably kill me instantly. 2. Embolize and remove it but take a chance on physical complications (again, the entire right side of my body).
After careful consideration I made the decision to remove it. I had 4 embolizations (coiling) to block the blood flow to the AVM and then surgery to remove it. Physically? I couldn’t use the right side of my body at first…it took lots of work and occupational / physical therapy to get me back on my feet. I was out of the wheelchair in 2 weeks, off the walker in another week and used a cane for about 2 months. Even so, I am happy I made the decison because dealing with the aftermath was easier than worrying every day whether or not I would die tomorrow.
I have been told that AVMs are found in people during autopsy over and over again and they lived long full lives without any knowledge that the AVM existed. I would advise that you become very aware of your body and what it is telling you. I had a build up of headaches that I chalked up to migraines and aches and pains in the right side of my body that made sense after the diagnosis.
I would say that it is completely up to you to determine what you want to do and what you are able to live with. Good luck and be strong.
Hi Dan,
I only have a migraine every 3 to 4 months, which the drs aren’t sure are related to my AVM. Right now, there are no neurosurgeons that will operate on the lesion. (But I haven’t investigated nation wide to find anyone either.) I really have decided to take my chances. You are so right, AVM’s are NASTY. It is such an awful decision to battle. You are in my thoughts. I wish you clarity as you move forward with your decision.
Dan,
I was in the exact same situation - you can read my blog if you want to get a feeling for the entire process. I took a very fact-based approach but remember that facts are different for each AVM. I basicall had 2 options:
- Do nothing/wait and see > risk of bleed rest of life about 70% of which 25% would have mild side effects and 25% chance of disability or death. So I basically had a 17.5% chance of at some point in life either dying or having disability due to my AVM. Question then would be, when would this happen? Tomorrow or the day before my otherwise Date of Death?
- Embo+cratomony > risk of serious side effects or death 5-10%, was told closer to 5% than to 10%.
So I weighed 17.5% against 5%. Easy choice in paper, and actually it was also in reality with those facts. The difficulties came in the hospital as surgery approached…there it is easy to forget the 17.5% and think you are well and then you start to think the trade-off is based on the 5% against 0%. But it is not…remember that.
Anyway, each person is different. I took a fact-based decision - other people might do it purely based on intuition and feelings. If I had done that I would probably weigh “I am perfectly fine today” vs “things can go very wrong” and have opted for option 1 above.
Good luck with your choice and what ever that leads to…
I’ll throw my story into it - first diagnosed in 1978 - a swollen spot over my collar bone on the left side - no symptoms but a slightly elevated heart rate. Had surgery to remove 98% of it at Mayo. Jump forward to 1984, swelling in left neck was worse, but docs and parents (was 17 at the time) decided treatment was more risky than symptoms. In 1986, did embolizations and removal (UCSD). In 2009, went to Mayo again because it was pinching a nerve - very painful. Did embolizations but no removal. Dr. Lanzino at Mayo was great but said technology was advancing so much that we should do the minimum and watch it and if we need to do more in 5 years we will.
I’ve had nagging “chronic” neck pain - some times worse than others, my left arm isn’t as strong as the right one but I can still use both of them. Am I worried about a bleed? Given where mine is (left neck and shoulder, that’s a concern. I limit myself to activities that don’t get my heart rate up too high - like walking the dog, golf etc.
I deal with not only the chronic neck pain but also a “fullness” and I hear my pulse in my ears almost constantly. I’m convinced (mainly because of my wife) that it’s related to my neck pain, AVM, swelling etc…
If I had to look at treatment options, I’d do what would allow me to continue the highest quality of life while also prolonging it. I just celebrated 25 years of marriage and I’m aiming for another 25!
There, just my 2 cents worth and my story.
Tom
I had absolutely no symptoms.Even looking back i can’t tie anything to the avm.I had headache’s maybe 1 or 2 a week some i thought from stress some from allergy’s depended on the time of year or how busy work was.Could hear my heartbeat in my right ear docter didn’t think anything was really wrong.Hypertension runs in the family and since my mom had an aneurysm and dad had a hemorrhagic stroke I kept an eye on my blood pressure and it was under control with medication.Turned 46 may 24th 2010 4 or 9 years to early retirement everything looked rosy.June 1st 2010 BAM my avm makes itself known and i have a bleed, came within minutes of dying.Knowing what i know now if i would have been told at 33 that i had a time bomb ticking in my head i would have taken care of it as soon as possible.I always was proud that i was emotionally and physically strong but i was no match for a little thing about the size of a golf ball.