Does anyone out there have a similar situation?

I joined this support group several months ago but never went on it as I think I was in some level of denial after I found out about my AVM in Feb, 2013. It was a completely incidental finding…I had an inflammation of the 8th nerve in my right ear that wreaked havoc on my equilibrium and landed me in the ER. An MRI was done and they found the AVM. It is 3CM in posterior right side, parietal lobe. My surgery is scheduled for the end of Jan, 2014 but I am having so many second thoughts. The surgeon said that mine is a Grade2 AVM located in non -eloquent brain . He feels that is in operable , with 2 embolizations first, and relatively safe to treat this way since it is too big for radiation to be affective. My problem is that I am asymtomatic and do not experience any headaches, seizures, etc …so the thought of doing a craniotomy ( that word still freaks me out), that carrys a 2-3% risk of problems in the surgery as well as so many of the side effects that I have been reading about on this site that have affected so many if you…
It just seems that maybe I should monitor it . Is there anyone out there in a similar situation as me…totally asymtomatic and had the surgery ??
I am an emotional wreck. I hide it well as I have 2 beautiful children, ages 10 & 8 that keep me too busy to sit down and cry , which is what I would like to do once in awhile.
By the way, my surgeons are Dr Steig and Dr Gobin at NY Presbyterian in NYC. Has anyone here used these doctors? Thanks so much for any input at all. I really appreciate it.

Hi Tina, I don't know how to answer your question because I'm not a doctor, however, from a lay-person's perspective, and from someone who experienced a massive bleed from my AVM (that's how MY AVM was discovered), I would think that the embolizations followed by the craniotomy is a good decision/choice. From my understanding, there is always the chance that an AVM won't bleed/rupture, but the chances of it bleeding/rupturing increase with age, especially if you become pregnant. Also, you don't know where you will be if the AVM ruptures and what if you're driving?? Personally, after having gone through an AVM rupture, my advice would be to have the embolizations and craniotomy. It very well could save your life and having the surgery will cure you of the AVM :) Good luck with your decision... we are all very familiar with your predicament and will all be here to support you :)

Yours story sounds similar to mine. The fear of driving my kids and rupturing or waiting to die was way to much stress to handle. I did it and am going on 8 years post op. I would recommend a good dr. That makes a world of difference

Hi S…thanks for your note. 8 years and AVM free! That’s wonderful! Yes, I think those same thoughts every single day for a year now and the stress is terrible. Can you tell me how your recovery was? Do you have any issues now with motor skills, brain function, sight etc?

Hi Tina
I was in a similar situation except that my AVM was discovered when I was six, so the initial decisions were for my parents. They waited because the surgery was not as advanced so it was very risky. When I was 16/18 I decided to carry on studies then did legal training. I did not get a job and decided that either I got this done (aged 25) before I really got on with my career or decided to leave it untreated. I was having a few headaches but they probably could have been controlled by medications and they were saying that the risk was greater. I had I think 4 embolisations a craniotomy and then a further embolization. It has not grown back.

My decision was based on the fact that they said I had a 4% a year risk of bleed which would be very serious and that I would have many years of that risk. I was advised not to get pregnant (though I haven't subsequently anyway). This compared to a 30% risk to "life limb and faculty" of the surgery. As the other poster said I also did not know where any bleed would happen - at home, on holiday, at work and whether they would recognise what it was or have facilities to treat it. It also played on my mind (what if I bleed? where will I be?)

I came through but I do have depression and infrequent epileptic seizures. I will obviously never know what the alternative could have been. Some days I think I shouldn't have had it done (due to the depression) but for the most part I know that I had surgery in a planned way with surgeons I trusted as experts in AVM and a hospital with good facilities. I could also plan time for recovery and my family and friends could know what was happening.

I live in the UK so cant comment on doctors in the US.
Best wishes whichever way you go with this.

Tina, there are probably hundreds of us in the group that have been lucky enough to go through what you're experiencing. Mine were found accidentally, as well, because of probably unrelated issues that led to an MRI. Some folks have gone decades without treating their AVMs and haven't had bleeds. Others have ruptured with no warning. I had 2 embolizations and surgery and have been free of AVMs for two years. I'm really glad I decided on treatment, but there's not much more terrifying than thinking of someone cutting into your brain. We ALL understand your fears and support you. There's no more personal decision than the one you have to make. The only recommendation I would make (strongly!) is that you talk with several neurosurgeons before deciding what to do. I had four different recommended paths and chose the surgeon I most trusted and the path that sounded most logical. I've never regretted it.

Hi Tina,
Our 13 yo sons AVM was discovered incidentally - right frontal lobe. We decided to do the craniotomy, just a month ago was his surgery, because we did not want to live with the possibility of it rupturing, and neither did he. He wanted it fixed. The possibilities of what could happen with a rupture are endless. We went to NYP and Dr Steig and Dr Souwedaine were our surgeons. Both wonderful, I highly recommend them. Friends of ours used Dr Gobin - also highly recommended - for the same procedure. Let me know if I can help at all. By the way - our son is doing wonderful! He's back at school and you would have no idea what he went through! Feel free to send me a message if you want. Good luck with your decision.

Michele, thanks so much for your advice. How are you doing since your AVM rupture?

Hi …thanks so much for answering my post. I am so happy to hear that your son is doing so well! I am also happy to know that Dr. Steig was your surgeon. I just checked my VM from Amanda( Dr Steig’s nurse) as I had asked her if there was anyone I could talk to that was asymtomatic and had surgery. She gave me a # for the parents of a 14 yr old boy. The last name was Charity. Is that you?! Would it be ok if I called you ? Thanks again for your support…

Hi. Yes, I am in the same boat.My name is Larry. 3cm right occipital lobe found on MRI for something else. Health wise I have symptoms that could be or could not be from it. The decision for me I think was pretty simple. I don't have children so I can't speak on that aspect. But for me, that dreadful feeling your having, I am having too. So the question was this, " Do I want to live in that state of fear?" Risking a bleed at any time at any where. As it stands right now, I am in control. I can research doctors and do my home work and feel comfortable ( as comfortable as one can be knowing he's going to let some stranger operate on their brain) with a decision I make with my family. Compared to letting it go, having a rupture and risking a surgeon being called in off the golf course to operate on something he may or may not know anything about. That may be a little blunt but I'm sure you understand my point.On top of that, I am not a fan of the embolization or radiation cause neither are 100%. It's a very scary situation how ever you look at. My first piece of advice would be to get a baby sitter, get with the person you love and trust the most and let go. Get that cry out. I am sure that would help some. My surgery is the 13 of Janurary. I have never been so afraid or stressed in my life. I hope the best for you. Good luck.As for Doctors and hospitals. Ironically, The surgeon I chose is the surgeon that just operated on my wife this past August. She had tumor removed from her brain. What I noticed in that whole ordeal is that there are support groups and what not you will find through the hospital. Don't be afraid to stop by the hospital to find these groups, there will be people there that could also answer your questions about the doctors there. DO NOT be afraid to ask questions. At any and all appointments you have, bring someone with you. Sometimes things become surreal and hazy. It's good to have someone with you who can actually absorb the info you are being given. If you ever need to talk, I'm here, we're here. This site is awesome. You are not alone. Good luck

Larry…thank you so much for your words. They helped me so much. I hope your wife is doing well after her operation. I can’t imagine the stress you have been under worrying about your wife and your own condition as well. I will be sending good thoughts and prayers your way on Jan 13th. Good luck. Keep us posted. Thanks again.

You should feel lucky. You have the time to learn,research and find a doctor of your choice. I went from having MRI due to migraines (no one took me serious) straight into UCLA emergency surgery. Luckily I had a great doctor on call and the last thing I remember was turning around on the freeway-until two wks later. I only have depression which I may have had a long time and still migeaines. But I lead a normal, for me, and regular life. Good luck and I say go for it. I have no regrets.

Hi Tina! My AVM was discoverd when it hemorrhaged and massively so, just days before my 15th birthday. I ended up in a coma. Life went on for me although it took years to improve. The AVM was inoperable due to size and location. 38 years later and 18 brain hemorrhages later too., it began leaking and formed a hematoma on my brain stem. I didn't have many symptoms either, yet knew something was wrong. They performed emergency surgery at UCLA, the surgery was followed by an embolization the day before to help surgeons not have to deal with so much blood. Bottom line, I never had children as being pregnant is an extreme pull on your vascular system, and then there is raising the kids, so much stress and physicality. You are so fortunate it didn't bleed while you were pregnant or delivering. It is a blessing you found out about it, they can repair it and you can watch your children grow up and not worry over every single pain you may have. That is how I have spent life. The AVM became part of me, the stubborn thing and now I have to learn to live without it. I am still recovering from the 15 hour craniotomy and have deficits, all of which could be so much worse if you were to bleed. Most are found incidentally. Consider yourself so lucky you haven't had a lifetime of headaches and seizures and trust me, you don't want that. Find your strength, the best surgeons you can and the surgery will enable you to be a worry free mother and eventual grandma too! Best of luck.

my avm was discovered by mri while in the er for a migraine. the er doc suggested I go to Jefferson in Philadelphia. the plan was to have embolizations to reduce the size and then craniotomy. I made this decision based solely on the neurosurgeon's advice. after all, he was a specialist in this field and I had absolutely no knowledge having never even heard of an avm. the first embo went well. greatly reducing the size. the second one was done and 2 days later I suffered a massive bleed and had to have emergency brain surgery. luckily my family was able to get me to philly and my neurosurgeon, who (i'm told) saved my life. I will always wonder if the bleed was caused by the embo. recently, I read something about leaving avm's alone, but who knows? in hindsight I think I might have done the radiation instead of the embos. but i don't give it that much thought. after all, it won't change anything.

I wish you all the best. we do have difficult decisions in this life. enjoy the holidays with your children. I have an 8 year old grandson that lives with me and brightens my life everyday.

I would answer from a different perspective. Please don't make your decision based upon your not having symptoms. My husband had no symptoms (except for "breathing in his ear" which we didn't realize was related until I researched after it was too late) yet he had a severe bleed, stroke, and has been in a coma. I don't say that to scare you....because you don't know whether yours will rupture or not, but so that you don't decide whether or not to have the surgery based upon an absence of symptoms. Most of the symptoms you find in researching are only the symptoms of a rupture....meaning that most symptoms will appear when the situation is already serious. Get medical advice and research for yourself....which you seem to be doing and that's what led you to this site, as it did me.

My son had an embolization done by Dr. Gobin. He is one of the best. You are in great hands at Columbia Presbyterian, I highly recommend the staff there. It is very difficult to comprehend the magnitude of your surgery. One step at a time. Our son had an Avm in left frontal- parietal area 3 cm- which bled, so we chose the surgery due to the bleed. My heart says that you are scared, and your decision to have the surgery is frightening you. The risk of a bleed is always there, it may be small, but it is there. Our son was only 8 when he had a bleed that is very scary too. Have faith, and pray for guidance during this difficult time. Know you are in great hands at Colymbia Presbyterian, and keep the faith. You will feel better when this AVM is gone. I will keep you in my thoughts and prayers.

Hi Tina,

First off I want to say that this is a story of my decision and how I made it with the help of my physicians and family. mine is a little different than most but I wanted to put it out here for you to see.

I am in almost the same situation that you are right now with a very similar AVM with regards to location and size. Mine was discovered after i suffered a bleed from a "flow aneurysm" which is an aneurysm on one of the feeding arteries from my AVM that was created most likely by the high pressure flow of the AVM. Because it was my aneurysm that bled, the doctors feel that my AVM is still considered to be unruptured.

You can read more about what happened to me in my profile but basically after they treated my aneurysm i had a long talk with my doctor about treated or not treating. Even after suffering a bleed last year i will have no deficits or symptoms relating to the AVM. Due to the location in the right parietal lobe and the size of the AVM, the doctors feel that mine is a grade 3 or possibly a grade 4 AVM. My doc who already saved my life once before basically said to me "I don't want to touch your AVM if I don't have to because you look so good", He feels as do I, that by going in and treating the AVM at this moment could possibly have more of a risk than leaving it alone right now and monitoring it. I also spoke with two other doctors who have agreed that just monitoring it for the time being is a good idea. I have also spoken my decision over with family and close family friends who are also physicians and they have all told me that if I am able to go on a live my life without worrying about my AVM at every moment, then to continue to monitor it without treatment. Is there a risk of me having a bleed, yes there is. But I take calculated risks every day of my life just by waking up or crossing the street :P.

That being said, I have also been told that at any moment if I do develop symptoms then I need to go and see my doc right away and then we will start to speak about treatment. As my docs have also pointed out, so much new therapy is being created that if I wait a few years there may be better treatment options without the major side effects that things like radiation or surgery have.

It was very hard at first living with the thought of this crazy AVM in my head, but now I hardly think about it. I do wear a medic alert bracelet and also carry a wallet card with my doc's info on it and most people I work with are aware of my issue so people are in the know of my medical condition at most times. I also have an MRI done once a year to make sure everything looks good.

If you do decide to treat, ask your doctors a LOT of questions. Ask them what side effects you may have with a craniotomy, right down to the very last detail of worst case scenario. Get a second or third or even fourth opinion as well just to make sure you are making the correct and most comfortable decision.

And most of all make sure you relax and take some time for yourself through all of this. I know how emotionally trying this can be so please remember to take care of yourself emotionally. And please let us know if there is any way we can help you out. Sometimes just having an ear that knows what you are talking about can help tremendously!

I had my craniotomy almost 25 years ago (I am now 45). My AVM was located in a spot that was operable, and was lucky that the several bleeds that caused seizures didn’t cause significant damage. Stay strong, and always stay positive.

I agree with most of the other posters - For me I couldn’t live with the fear of rupture if I had a chance to fix it. No regrets. 25 years later I have a family of my own and have no side effects (at least none that I realize)- and have never felt better.

Best wishes.

Thanks Susan. It so good to hear a positive story. I have only had 2 opinions ( NY prebyterian and columbia presbyterian)and both said the same thing. I am now debating getting a third but am trying to figure out who that Dr should be.
Thanks again for your advice and support…

I am not on this site very often myself, but I would recommend doing whatever you can to avoid a rupture and/or bleed from your AVM. Mine was not found until it ruptured causing a stroke. I have very little to complain about, but the hospital bills from spending almost an entire month in ICU plus the stress my stay put on my family are what I would suggest avoiding if at all possible. I am one of the success stories with my main "problem" being a visual field loss which makes driving out of the question, You can always get a second opinion. I was lucky to have a RN for a husband who sent me to a hospital where a Dr. specializing in AVM was working and because of the bleed I ended up having 3brain surgeries. To sum up my feelings about this I would avoid a rupture/bleed if I could.