Another update,, surgical consult conflicted

hi to all and i hope things are well for all, Well im at the stage where im done getting scans for now. Dr said he has everything he needs. he did agree that it needs to come out, and now he is confident he can get to it through surgery. he did say that there are risks involved as it is in the occipital lobe and the hh that i have now could get alot worse and never recover or it could get worse and recover some or it could not change at all, Those are some of the complications involved. he said he now needs to have radiologist confirm his finding and also have the gamma knife doc look over the scans to determine if it can be zapped. he said mine is very small, under a centimeter and that gamma can sometimes not be done if there to small and mine may be in that category.which would in essence mean surgery is the only option. embolization is out as the vessel is to small and it could blow out with glue so i may be left with having to make the decision for gammma or open surgery. im doing the risk vs reward thing alot right now, there is 8-10 shot of complications with open surgery but its gone after, 3 week recovery if all goes well.. gamma not invasive, two to three year wait for possible results and 6% chance of rupture during the time.. back to work in about 4 days if it all goes well. I know alot of you have been in the same boat and would like to hear your input.. im kinda thinking that gk if it possible might be the route to take. he said i could get back to work and not really have any restrictions at all,even lifting which i thought was weird as i have missed two months of work and after treatment with gamma it isn't going to really change much so im kinda conflicted.. anyone that had or has similar situation chime in...

Hey Gregg, any time you’re conflicted is a great time to get a second opinion. Worst case, you hear the same thing. Just ensure you get a second opinion from someone that’s an expert with AVM’s. I know a doctor that will give you his opinion for $100, Dr. Spetzler. Look him up, and if you’re interested I can shoot you more details. All the best!

My husband is dealing with deciding as well. He just had his angiogram and MRI done 2 weeks ago and they can operate or do radiation. For us, we decided surgery because once it’s gone, it’s gone. Plus the Doctor did tell us his risk is higher for rupture because he has an aneurysm as well. Obviously still scared of what’s to come but the not knowing if you could have a rupture while radiation seemed like risky business. It’s all risky business. Good luck either way, I hope it all works out.

Hi Greg,
To have an option before rupture is a luxury I did not have. My AVM ruptured july 2013 and 4 days icu,12 days unconscious, and 11 week hospital. Over a year now and rehab is still tuff. What ever you decide from your informed info is fine…BUT take the risk of rumpture at of the table asap. Good luck.

Best regards
jack from Australia.

thank Jack and sorry to hear about your injury. Mine did already rupture too i am one of the lucky ones that didnt have to much deficits from mine. i just have hh and am almost back to normal so i get frightened about the problems that surgery can cause and dont want to lose more as ive gained back so much..

My daughter's only option was Gamma Knife because of the size - or maybe they said it was the best option. We found hers before it ruptured as well. They told us that it could take 2-3 years to obliterate, and probably wouldn't see any progress in the first year. I am ecstatic to say that after only 9 months after GK the AVM has shrunk to about 1/3 it's original with a great chance of it being gone when we hit the 1 year anniversary. With that said - she is 17 - and they've told us that the younger the patient is, the quicker it seems to obliterate. I wish you the best of luck with your decision and of course the results!

Hi Gregg, hope you are having a splendid day. Choice of surgery or gamma knife, mmmmmmm. I wish they could have taken mine out. It is deep done in there where they can’t get to it surgically. My options were: embolization where the tiniest of mistakes could leave to complete paralyses, possibly for life. Let’s think, I have horrendous headaches on a daily basis, but I can get up and get meds or go lay down for a while until they return to their normal roar in my head, or have that same problem but not be able to move? Embo is out, next: we can sit around and see what happens. We know what is happening and it’s not getting any better, next: radiotherapy. We shoot the heist dose of radiation possible to the AVM and within a year it will start shrinking and dying and eventually disappear. Ok, well go with that one. Have it done in 1995, AVM ruptured in December 94. Go back in one year for checkup, get MRI and visit neurologist and he advises good news, it hasn’t gotten any bigger, yay!!!..BUT it hasn’t gotten any smaller yet. I advise him that I am getting terrible, horrendous headaches and thinking that the shunt that as they said “is the greatest neurologist in the world” put in. Since then he has left, not so good after all, and new neuro dr. Sends me to the ER for my headaches. I’m thinking, I am already up here in the neurological part if the hospital complaint of headaches and you send me to the ER? Wait in ER for 8 (eight) hours until we are taken back to see the on call student. Teaching hospital. Tell him what is going on he calls the original neuro who put shunt in, he says, it’s all in his head, give him some Tylenol and send him home. He was correct about one thing, it was in my head. Student returns just as headache is coming on and I had a tendency to grab hold of things when these happened, so grabbed his arm and bed rail. After it subsided, I had bent bed rail and student said, " I think you broke my arm" I said well that’s what I go through about every 30 minutes or more. He went back to call neuro who said there is nothing wrong with his shunt or he would be having the worst headaches in his life, SEND HIM HOME!!! So we left, with out the Tylenol, we had some in car and I know how much they were going to charge me for each one. Can buy a whole bottle. Finally got my home dr. to call in a favor from another neurosurgeon, you can’t find anybody to touch you if you have had work done anywhere else. But he did see me and found out that shunt WAS in wrong place. He fixed that and at least those headaches are pretty much gone now. Last MRI was in March, they advised that AVM still is the same size, nothing has changed except that blood is starting to flow back through the spot where it ruptured. Wonderful. Drs. don’t seem too concerned, but I’m thinking there has to be a hole or something wrong in there because it ruptured. Hello, blood flows through holes not around them. But anyways, not sure if from the radiation or the constant excess of water to the brain where it wasn’t draining because of super neurosurgeon not putting it in right place, but started to stutter real, real bad then my walking started to look like my stutter, not too good. After new neuro fixed the shunt the stutter has almost gone away unless I get angry or try to talk real fast or my head starts hurting really bad, and that’s been 6 years ago. But getting back to choices. If they could get mine out, even if I had to miss work a couple of weeks, I would do so, because I have not been able to go back to work yet and it has been, come December, 10 years. I do get disability, which helps, but I worked my entire life, up to 3 jobs at a time, until mine ruptured and I hate it that I can’t get back to work. Also with the walking problems had to start using crutches and that has screwed my back up so along with my headaches that I still have everyday 24/7, some are bad and others are just horrendous,imagine the worst brain freeze you ever had and times it by ten, or think of the…the…furry little thing on bugs bunny cartoons that spins around tearing things up, my memory sucks too, wrapped in barbed wire running around inside your skull, every day sometimes once sometimes 50 times a day and horrible back problems, so yeah, if they could have taken mine out, it would have been gone years ago. But everyone is different, your gamma knife might work and you can go straight back to work or your surgery might go wrong and it take a year to get back to work, don’t wish that on anybody trust me, so that is a choice you have to make, and you are the only one who can make it. Either way, I wish you the best and hope everything turns out great for you.

wow, its stories like yours that make me feel unworthy to even be in here. I had a rupture on may 22 but the only issues ive had with mine are the left eye issues. i had some headaches when it first happened but they have pretty much gone.. the headaches that i used to get before it broke i dont get anymore.. yea i guess im going to go with my gut unless i dont have an option which could happen with mine. mine is in the right occipital lobe. dr seems confident he can get it out and im confident with him but nerves are still there. i pray daily that i will make the right decision. thanks tj and good luck with your continued health and i pray that things get better for you

Yes keep praying, that is one of the things that helps me keep motivated. That and my BEAUTIFUL wife and two Wonderful kids, kids? 22 and 20, kids no more. But I do thank The Lord up above that he lets me get up to see them, I get to move around, and when I go outside and the sun is shining, I get to see my shadow on the top side of the grass. Things could always be worse. I could have been paralyzed or worse, what they thought I should have been, dead. So I consider myself a lucky man. Yeah headaches, backaches, let’s you know you’re still alive. I think next time I go to the doctor I am going to ask for another shot of radiation. I am an eternal optimist. I take pain pills to keep my headaches to a dull roar. They never go away but I keep taking them. My wife is like why do you keep taking these pills they don’t make your headaches go away. Nah, not the last couple thousand, but the next one might. I don’t sleep well at night so I take sleeping pills. My wife, why they don’t help, you don’t sleep? Well the ones from the last year and a half hasn’t but the one I take tonight might. I get on average maybe 5 -6 hours a week. Most nights none, some nights a half hour or so and 1 night a week sometimes I get 3 or 4 hours. It’s amazing what you’re body can get used to. I know I slept one night for 6 hours and felt so bad when I got up, I couldn’t do anything all day. Of course there are some days where my body says go, go ,go but my brain says no, no, no. Then other days my mind is like let’s go, and my body says you try to stand up and I’m going to fall on the floor like a damp towel, don’t move. But thankfully those days don’t happen too much so I try to olive as normal a life as possible. I try my best to stay active by helping coach the local high school softball team, when days allow, and try to stay busy within our great little community. I can’t just give up and die. I don’t know how to give up, it’s not coded into my DNA. One day maybe they will be able to get in to get mine, like I said, eternal optimist, but until then, life goes on. With or without you, and I’d just as soon go along with it, every chance I get

Hi Gregg, I'm glad you put this question out here :) , Its good to get feedback from an educated audience :) , I didn't have the option you have well I did kind of, I was told that the normal treatment for my type of AVM was Radiation, But since it has already bled then the chances of another bleed in the next 1 year are much higher so the surgeon recommended that I go for open surgery. At the time it was like a hammer blow to me ..... but I'm now glad that I did it since I managed to come through the other side with no deficits and its only been 1 month since my surgery but I'm already thinking about getting back to work and getting my life back to normal, This is the positive side of the surgery in a perfect world you have the surgery and recover well with no issues and your AVM free :) , On the other hand brain surgery is a huge deal and is very dangerous :( , But does offer fast results !. No more ticking time bomb in my head and I can start to think about my future again :) . Going to try take my kids to Disneyland next year and also get a new house soon, These are things I thought about before but didn't want to spend the money on etc ... but now all that matters to me is health and happiness :) Good luck with whatever option you choose and I hope you are AVM Free soon and have a healthy and happy future.

So sorry about your issues. Definitely another opinion in order - I had my surgery at Johns Hopkins in Baltimore, Dr. Tamargo. I had an AVM which had "leaked" and was likely to do so again. Also aneurysm which was not a candidate for coiling due to the shape. So I had the open surgery a year ago. Hospital for 4 days, 5 days in Baltimore to see the doctor again, then back home to Florida. I rested a lot, took anti-seizure drugs (which I'm still taking though I've never had any true seizures, just little episodes of not being able to speak for about 20 or 30 seconds. I see surgeon every 6 months, neorologist every 3 months. My energy level is not up to par (I am a year older too - 73 now), but I'm playing tennis 3 times a weeks and have a very active social life. When I went to Hopkins for the 3rd opinion, they weighed all the pluses and minuses of other treatment with me. I opted for the surgery and I'm very happy with the results. So - another opinion or two is definitely in order for anyone with your issues. I wish you the best! Chilly Girl