My asymptomatic AVM story

Hello,
I am writing this discussion post, not so much for myself, but for anyone else down the line that may be looking for a story similar to their own (as I didnt find much.)

In May of 2012 around the time I was under extreme (somewhat self-induced) stress I had a quick, but severe, experience with vertigo. The whole thing lasted about 5 seconds with other 5 minutes of naseau. It was enough to scare me. Between this and a little weakness in my middle left finger and a numb spot on my stomach from childbirth, I thought it would be a good idea to see a doctor. The general doctor diagnosed me with vertigo (prob from stress or a virus of some sort), but suggested I see a neurologist anyway.

I waited 3 months to see a neurologist. He put me through a whole bunch of tests in the office and gave me a Rx for a brain/cervical and thoracic MRI just in case.

About 2 weeks after I did the MRIs I called the doctor to see what the results were, naively not knowing anything about how long it takes to get the results. Apparently the doctor had the wrong phone number and had been trying to reach me. He got on the phone and asked me "Have you ever had a stroke? Been in a lacrosse accident? Any type of car accident? You have a whole in your head." Worst day of my life ever.

Because I had some kind of damage that was not explainable (that being the key) I was given two more MRIs/MRAs w/ contrast. Thank Gd they were able to rule out MS, tumors,an anuerysm, etc, but two different opinions said that an AVM cannot be ruled out. A what? I heard never heard of an AVM and didnt know what to think. The neurologist said "Dont worry they just do an angiogram, shoot some glue up there and you're done." This is how my journey started.

I live in NYC and consulted with three top cerebrovascular doctors to discuss if they thought I might have an AVM, the risks of an angiogram and if I should have an angiogram. One doctor absolutely told me I did not have an AVM and didnt need an angiogram, but if i wanted one for peace of mind to do it. The other two told me they would be surprised if i did have one, but to have an angiogram just to make sure.

In December 2012, i had an angiogram at Columbia Presbryterian w/ Dr. Philip Myers and found that I had a 7mm AVM in the right frontal lobe, non-eloquent brain tissue, superficially located. I cried my heart out on the table. By then I had done enough research to know "you just dont shoot some glue up there and you're done" as the neurologist had initially described. I was completely shocked I had the AVM as I didnt get that impression from the doctors during all my consultations.

After the angiogram I started my consultation process. I had met one other man with similar circumstances from this website who had a craniotomy years before who gave me many ideas of how to proceed, who to consult with and other emotional/practical advice. My neurologist was out of the picture at this point as he would only refer me to doctors within his own hospital. I felt extremely lonely. My family was of course a great support, but I felt like no one understood how hard it was to make a decision to have BRAIN SURGERY!! when I had never even had any symptons. It was the most bizarre thing in the world. At this point I didnt tell anyone what was going on outside of my immediate family. It is hard to act normal when the world as you know it has changed. I have three children under the age of 4 and this enormous decision weighed on me like a 10 ton brick.
Yes, I could of done nothing, but I kept coming back to this truth: If something happened to me in the future and I had a chance to take care of it at one point and didnt, that would be the most irresponsible thing in the whole world.

I met two doctors I really liked who had vastly different philosophies and I was torn of who to go with and which procedure to do. Both those doctors thought I should have the craniotomy, but i also strongly considered Gamma Knife. Embolization was not an option for my situation. With Gamma Knife, even though i had an 80% change of being cured after one treatment, the thought of radiation damage at my age (mid 30's) was too scary of a prospect long term. Also, you have to wait another 2-3 years to see if it worked and you may end up having a craniotomy in the end anyway. I had read on this site so many people who had Gamma Knife and the side effects/damage didnt seem better to me than just having a craniotomy to start with.

Choosing who to have the craniotomy with was for me as difficult as deciding to have the craniotomy. My rabbi told me, "You must go with the person you have absolutely NO doubts about" and at that point my heart told me which surgeon to go with. I chose Dr. Robert Solomon from Columbia Presbryterian and made two other appointments with him to go over lingering/additional questions. He was at all times honest, humble yet confident. He's not just an excellent surgeon, but I believe he is actually a great man who is living his passion. It took me another 6 weeks to have the courage to schedule the procedure (another 6 weeks out.) I could not pick up that phone to make that appointment, but one day I just chose to not overthink it picked up the phone and scheduled it w/o letting myself get emotional. I didnt look back.

At no point during this time did I lose site of how grateful I am. I was extremely blessed to find the AVM the way I did and to have the blessing of choosing the time/doctor/hospital that I wanted. I dont write this to envoke any bad feeling from any other readers with different circumstances. The fact is that someone else will read this who is going through and feeling the same things. It is beyond indescrible how hard it is to decide to have elective brain surgery.

I used the time before my surgery to slowly tell a few of my close friends about what I was going through. This for me was very hard. I didnt have a hard time talking about the surgery, but seeing the look on their faces when i said "brain surgery" was very unpleasant. I told the majority of people after the surgery so that I wouldnt have to feel this over and over. Doctors dont like when you read too much on the internet and I understand why, but knowledge can also be power. By reading this site and many others i had a better idea of what to expect, but also I saw that people were able to write posts 1 week post surgery, which made me believe that I too would be well enough to do so.
Often when you tell people brain surgery, they think you are going to be a vegetable. Some of the comments i have heard from people since the surgery are very disheartening, but i guess i cant blame them for thinking these things. I just dont ever want to be the subject of other's bad thoughts.

I also used the time before surgery to strengthen my faith. I had a very strong faith before, but I did everything I could to make it stronger. I never ever played the victim and tried to always keep a positive outlook. The one or two times I really broke down, my family members would not allow me to feel sorry for myself. I think this helped tremendously as really there was no option but to make a full recovery. Period. That is what I had to beleive and that is the mindset I took with me to surgery. I cannot underscore how much a positive mindset will take you through this time. I gave charity, I prayed ALOT, i took things upon myself to do after the surgery should everything go well, I got others to pray for me on the day on the surgery, etc. There is only so much you can control in this situation, at a certain point you have to totally let go. I was told many times, "how come you are taking it so easily?" It wasn't true. I just kept myself very busy and also I felt like the situation was just too big for me. I couldnt even give the situation the respect it deserved in a way. The only thing I really did have before the surgery the week before was extreme anxiety and apprehension. I was constantly naseaous.
Someone gave me the advice to visit the Neuro-ICU before your surgery to de-mystify it and i have to say, it was excellent advice. I walked into the Neuro-ICU (almost passed out before I got in there) and was quickly taken on a tour. I was told what to expect, what it would be like on day 1 and day 2 and this took so much fear out of me. There was no one running around in a panic, people were smiling and telling me i would be fine. It gave me a lot of comfort.

The morning of surgery was totally bizarre. I can imagine if you've had many symptons, you just want to get it over with and feel better , but for me I was this "normal" person and then I was going to lie down and have brain surgery. What?!
I said goodbye to my family and walked into the surgical room that was totally full of people. The surgeon had visited with me earlier (when I did my last ditch effort to get out of the surgery), but was not yet in the operating room. The anesthesiologist made me laugh and let me have a personal prayer item taped to me. I recited a few prayers to myself and that's it. That's all I remember.
Apparenly, i have had a bleed in the past which closed off part of the AVM and it was larger than they expected. The surgery (incl the angiogram) took about 7 hours and they got that sucker out. I remember every second of waking up in the angiogram room and everything after. I saw my husband in the hallway and gave him a big smile and a thumbs up. I was estactic beyond words (and of course still had medicine in me) that i could talk, think, move, see, etc. It was by far the best moment of my life. I was so happy and grateful. No pain and no bruising could take that away.

Your head is wrapped in a tight pressure bandage. As the anesthesia starts to leave your system, you defitely feel pain at the incision site, but it is manageable w/ pain killers. That big huge headache i was terrified of never really materialized.
The first night in the ICU was a little rough. I was beyond nauseated and threw up multiple times (from anti-nauseau medicine the most, go figure.) I also did have a headache of course. I could only eat ice chips and saltines. Thank Gd that passed and by 9 am the next morning I was already up and walking (a little by force I'll admit). To me it was a miracle. You cant believe that you can go through somehting like brain surgery and get up the next day and walk. As you probably know, the brain has no pain receptors so you dont have to be in a lot of pain after surgery. I hope that gives you comfort. I must of had 40 neurological exams over the three days (two nights) i was in the hospital. I also had the help of a physical therapist who walked me in the hallways and up and down stairs as I have stairs at home. They took the bandage off early morning on the third day, when of course i used my Iphone right away to take a picture of my new reality. The doctor shaved really very little hair and the staples were hard for me to see, but weren't so bad. Dr. Solomon really made a consitious effort to shave my head in a way that it would be covered by my other hair.

Once I got home, I found that i was extremely sensitive to noise. Of which there is ALOT in my house. I was in bed 18-20 hours a day the first 2/3 days. Seeing anyone at all outside of my family was extremely taxing on me. I found that within a day or two after I stopped the steriods (which keep you up and do not let you sleep well) I needed to sleep less during the day. However, what I find is that I usually have a good hour or two in the mroning and another good hour or two around dinner. The time in between I need to rest. I have taken short 10 minute walks every day, but usually those drain me as well and i get very nauseous. I am about 10 days out of surgery and I am tryign to do too much too soon maybe. Do yourself a favor. Really don't lift anything. You'll get really sick if you do. If your family allows you to take it slowly and spend time alone, do it. Dont bother yourself with visitors. They'll all tell you how good you look, when it will take you the whole day after they leave to recover from their visit. To them they dont see the scar and you are sitting up dressed and having a conversation, so they think you are fine. It's not reality. Have patience with yourself (I'm telling this to myself right now!!). If people are willing to cook for you, LET THEM!! If people will take your kids away from the house to play, LET THEM. You need all the help you can get.

I hope i will get a litle more energy every day. Right now i cannot contemplate having to take the train/subway to work in 6 weeks. There just seems no conceivable way, but I hopefully will get there. I thank G-d everyday for showing me incredible compassion and keeping me humble. Truly if this experience doesnt make you a better person, a better spouse, a better parent, nothing ever will. Nothing materialistiic will ever feel as good as being cured from an AVM you never knew you had!

Good luck.

Great story, LYLa. Best wishes for your full recovery!

Thank you for this story Lyla!!

I too have an asymptomatic AVM that was found after an unrelated Aneurysm I didn't know I had ruptured into the ventricle of my brain. The cerebral hemorrahge from this didn't cause any deficits which is am SO very thankful for! Before my aneurysm ruptured I can count the times on one hand that I have had headaches. During the whole process of trying to determine what caused my bleed they found my AVM which is in an eloquent area of my brain (Right parietal lobe) and is slightly larger than yours (2.5cm in circumference). It is also lacy and diffuse so it is more spread out with active brain tissue between the vessels. This makes treatment a little more risky and could cause major deficits which I do not want at the age of 30. I was mainly given the gamma knife option which would ahve a 75% chance of cure with one treatment and a 5-10% chance of deficit. When I asked the neurosurgeon who handles gamma knife at my hospital what he would do if I was his child or his sister or mother he said he wouldn't do anything. My primary neurosurgeon who fixed my aneurysm told me that he doesn't want to touch it because there is a chance it could cause deficits and at the moment "i look so good". He even sent me to get a neuropsychological workup to see if I had any deficits related to the AVM!! In addition, because of the anatomy of my AVM it has a low rupture risk.

I got lucky and the doctors were able to fix my aneurysm with brian surgery but they have decided to leave my AVM alone for the time being. I thought about getting a second opinion but when i spoke to a bunch of my person family friends who are all well trained and experienced doctors they have all told me not to get a second opinion unless the doctors decide they want to treat it. I go back for my first yearly follow-up on July 9th where I am going to ask my doctor some questions about the possible deficits I may have if I did decide to have it treated via surgery.

It is kind of funny you mention talking to friends as well as strangers about having brain surgery. I did get unlucky because they had to shave part of my head to place a vetriculostomy drainage tube into my head since i did develope hydrocephalus (i told them to take all of it off in surgery for my aneurysm even though they didn't need to because they just shaved the front part. If i had left the back hair it would have become the world's worst mullet). My ID that I use constantly since I travel for work has a picture of me with long hair so when I go to the airport and go through security I still use that ID. I often get asked why I cut my hair when they see the difference so I say that I had brain surgery. The looks that I get from people when I tell them about it can be strange because the expectation is when you have brain surgery then you must have a deficit after.

I know what you mean about feeling strange having an AVM and going in for surgery when you have no symptoms. I was just thinking about this the other day. That is part of the reason why I am so hesitant to have my treated, because I feel okay right now physically and I would ahte to go into surgery only to come out without an AVM but with major deficits like the inability to use the left side of my body.

As for being tired and lacking energy after surgery I can totally relate, but it does get much better! I was exhausted after the car ride home from the hospital!! I honestly walked into my house, kissed my dogs and went to bed for a few hours after I got home. It took me a few months to get back to the way I was before and I am still kind of getting there. After 10 days out of surgery I was sleeping a lot at night and taking 21 hour to 3 hour naps every afternoon.

I am glad you were also able to find emotional assistance in your faith. I think having people of every religion praying for me through everything that I have gone through helped a great deal. My mom had me on every prayer list at every church, synagogue and possibly a few buddhist temples too!! She even had me on the prayer list at the synagogue in St. Thomas and had our cousin who lives in Israel go to the Wall and pray for me. The fact that so many people cared helped lift my spirits and also helped me heal.

Please know you are in my prayer and thoughts every day and I am praying for a fast recovery for you (although it sounds like you are doing great!). Remember to take it easy and it is okay to be a little selfish after brain surgery ;).

I so appreciate your post, Lyla. I had brain surgery on March 1. I found out I had a bleeding Cavernous Malformation in the brainstem a year ago, in May 2012. I had to quit working because even tho it was a microscopic bleed (a burst would of kill me) I was having symptoms. Unlike you, I did have symptoms, but what is similar to my story and yours is that I did have to make a choice. For months, I was told my CM was inoperable due to location. Not 1, not 2, but 5 neurosurgeons told me it was inoperable. In January, after some research; after I came on this site and learned the importance of being pro active, I sent my MRI to Dr.Spetzler, In Arizona. I was shocked when he called back with 2 choices. 1) he could do surgery, but it was very risky; lots of deficits risks. 2)not do anything, and it was not a matter of IF it was going to burst, but When it was, 99% chance between now and 5 years. I have 4 children. I am 35 years old. What grim choices.... I was without words.. I have never felt so lost in my life. I am a born again christian, so faith is very big in my life. I didnt cry a lot, if any... i was just in disbeleif! One of the best surgeon in the world was giving me a choice, in which he said none was better than the other. However, I knew that having surgery versus a burst was most likely to at least have me keep my life. From all the stories I saw and heard, the most disabled people, or the ones that died, had emergency surgery after a bleed... I didnt find anybody who chose to have the surgery so I really had nothing to compared to. After agonizing for 2 weeks, I made the desicion to have the surgery. I accepted that I was going to come out of it disabled, but for my children, for the sake of them not losing their mother, I accepted it. It was one thing to accept it, but I wanted to be at peace. I felt fine, I had recovered from my May 2012 bleed and was having a very normal quality of life. How could I go into that operating room knowing that I would wake up a disabled person. I was given a 95% chance of complete paralysis by my local neurosurgeons. Dr.Spetzler wouldnt be so specific, he just said I would have deficits but most I could recover from within 1-2 years.

I struggled with that thought every day... How can i walk in that room feeling fine just to come out not even sure if i will talk, walk, see, or even remember my children?! What if I had 4 more years of "normal" before it burst? What if it only bled drops my entire life? Was I willing to take that chance??

I prayed loud and clear for that peace. I knew the surgery was best, for my children. I might be disabled, but the surgery had a lower risk to kill me than a brain hemorrage did!!
I have prayed for peace more than once before. A kind of peace that some people would consider impossible to get. It always came... but this... didnt come... then...

On February 18, less than a week after I knew surgery was best and just was praying for peace and guts to make the call, I had a bleed. Just like that. I was in the car with my husband when all over sudden, something "hit" me. I had been feeling more vertigo than usual (like you, this was my main symptom) but didnt think too much of it. In less than 1 min after that, I had petite mal seizure (i was having simple partial seizure since May, they are very uncomfortable, but no body know you are having them but you) and 1min later, I could not move. I was completely paralysed. I started crying, for the first time (i dont cry easy dont I-yet i tear up at cute commercial haha) and all over sudden i just could not breathe. I was gasping for air pretty strongly and told my husband I needed help. I also was saying "no now, not now not now! God was with me because not even 10 sec after it started we were right next to a fire station with bunch of paramedics outside. I got help right away and 5 mins later was in the hospital. I wont lie, and at the moment I really thought I was going to pass out and die at any second. I was just waiting for it to come. I told my husband to be patient with the kids. I was so confused... why a few days earlier I had made the decision to have the surgery that was going to save my life but disable me, and God wouldnt let me have the time to do it?! That was one cruel prank. Yet, I accepted it and felt peace. I was in and out a lot and finally i stabilized and after 2 nights and 3 days in the hospital, I was release.
This, to me, is the incredible answer I needed to my "doubts" .I now had the proof that this could happen at any time, and I had NO doubts that I needed the surgery ASAP. This event gave me not only the peace that I needed but also made the surgery happen a lot quicker. 6 days after I got out of the hospital, my husband and I made the 2000 miles trip and I had my surgery on March 1.

When I woke up from the surgery, i could barely see and i could not move anything. I was completely numb from chin to toe. I was not upset at all, as I expected it, and accepted it. My kids still had their mother; the only thing that mattered to them. My recovery has been amazing. Not only I am not disabled, but I was in the rehabilitation center were I relearn how to walk and do a lot of other basic things, in less than 2 weeks. I was so expecting major deficit. Something I forgot to mention, 3 days before my emergency hospital stay, I finally found 3 people that had brainstem surgery in the same circonstances that I did. They had symptoms, and small bleeds, but no burst, and they chose to have the surgery instead of waiting. Their recovery took about a year, but all 3 of them were mobile and had good quality of life... so when I woke up, I knew the way I felt could only be temporary. I was ready to recover!!

Now not even 3 months later, I walk without a wheelchair or a walker, my vision is very decent, my vertigo is almost all gone, my seizures are gone, and I do have a tuns of small annoying deficits from the surgery, but its only been 10 weeks and I may need surgery to correct my eyes and hearing (60% loss in left ear,40% right) Like you, even how "deaf" I am, I am very sensitive to noise. That is one thing that I cant explain.

Anyway, I appreciate your story, and in a lot of ways is very similar to mine. You made a choice, and a difficult one at that, and you are forever grateful for the outcome. I am still in the "honeymoon" stage with mine, and I dont think it will ever leave me. I am hearing more and more great outcome of people who had brain surgery as a choice as opposed to a emergency surgery. Its very very hard to go thru this knowing you wont be the same, but at the same time, waiting for the last minute gives you even more deficits... its a tough call. I often think what would I do if it was my child and not me?? would I be able to "decide"... I cant imagine!

Thanks for sharing your story. It feels good to know I was not alone with the same emotions. When was your surgery? It sounds like we had the same dilemna at a very similar time...

Thank you for sharing your story Lyla. It will definitely serve as a great help to others here. I'm so pleased that you are doing well and are now AVM free! YAY!! The exhaustion will improve but it sounds like you're doing exactly as you should..taking it slow, allowing others to help and resting. Continued best wishes as you continue to recover!

Lindsey,
Please contact Dr. Doug kondziolka at NYU hospital. He is literally the world's expert in Gamma Knife. You will find him as an author/co-author on every Gamma Knife research study. He is the one that helped come up w/ the AVM rupture risk formula of 105-your age. He is kind and incredibly intelligent. If i had Gamma Knife, it only would have been with him.
Best of luck, thanks for telling me your story.

Wow, your story is incredible. May Gd give you continued strength and healing so that you may raise your children with joy and good health.

Thanks for this post, it has really helped me to understand what is ahead for me! Best wishes for a speedy recovery.

Hi Lyla…I just read your story and it took everything in me not to cry… mostly because it is so similar to mine , not only how your AVM was found but every single thought you were having up until your surgery is everything I am experiencing right now…exactly.
I got my second opinion with Dr Solomon but I decided to go with Dr. Steig from Weill Cornell NY Presbyterian. .My surgery is now scheduled for Feb 3, with 2 embolizations prior to that. I am so happy to hear that you are recovering well. Thanks so much for all the info on how you are recovering. It helps so much to hear the details from people who have gone through it. Keep us posted on your progress. I will do the same. Thanks so much Lyla…

Hi Tina
Was just thinking about you. How are you doing?
I thought this page may help you.
Bruce personally helped me out before my surgery. He also had embolizations so I thought this site may give you some insight.
http://brucebarry.net/etc/avm/
L

Hi Lyla,

My wife recently has undergone surery to remove an AVM and was curious of how your recovery went in the 4-8 week period? She also had a bleed and seemed to stabilize prior to removal of the AVM (right temporal lobe, 3 cm, superficial, non-eloquent) and is still showing no signs of any neurological damage. I would love to hear more about your story, or connect the two of you all. Thanks and God bless.

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