Trouble making a decision

Hi everyone!

My name is Lauren, I'm 20 and I live in Australia. My AVM was discovered in late January of this year, completley by accident, and I am entirely asymptomatic.

In the last two weeks I've seen a neurologist and a radiosurgeon, and both of them are telling me different things. The neurologist is telling me that surgery is my best option, while the radiosurgeon is telling me that stereotactic radiosurgery is my best option. I don't know what to do anymore. I'm really distressed about this whole thing. It's entirely my decision and I don't know what to think, or which one to decide.

I understand that the risks and procedures associated with both, but I'm having a hard time coming to a decision. Both my parents want me to have the radiosurgery but I'm concerned about the up-to-three years it takes for it to be effective? - I have an anxiety disorder and depression which makes me stress about things like this.

I'd love to hear from people who have had either of these options, and about the treatments effectiveness and how it effected thier life afterwards. I'm a university student so I'm a little bit concerned about getting back into my studies after this as well.

Thanks everyone, and good luck.

I say get rid of it altogether, if surgery is an option, you have people to look after you afterwards and you are young, get the surgery and get it over with and get on with your life. But that’s just my opinion. And good luck!!

Lauren, Welcome to this group. I can tell you that my son was in the same position as you are in now with deciding on treatment except that his AVM caused him to have a grand mal seizure and that is how we found out about it. His options of surgery or Gamma knife radiation were given to him and we had to decide. He was 17. Personally, I could not believe that WE had to make this decision!? I thought that was crazy and I didn't know how to help my son make a decision like that. In the end, we got a third opinion and this third doctor told my son he should do Gamma because it was less invasive. My son's AVM also had one deep part to it that our surgeon was worried about getting to that part and the damage it might cause. He is now almost 3 years post Gamma treatment and we know that the radiation is working very well on his AVM.

Did your surgeon give you the expected outcome if you chose surgery- like your risk of having damage from the surgery? How big is your AVM and where is it located and is it close to the surface of your brain?

If you would like to ask my son any questions, please let me know and I know he would be happy to answer them for you. He is 21 years old now.

Hi Joy. Thanks for telling me your son’s story and I’m glad to hear that it has worked for him. My AVM is very close to my occipital lobe and a fair way into the brain, and the risk of having damage to my vision is 10-15% through surgery, and 3-5% through the radiosurgery. There is also medium risk of developing epilepsy via the surgery, as well as other risks associated with the surgery. I’m very confused after being told two different things in two weeks, so maybe I should get a third opinion as well. This is all quite new to me, so thank you very much for your opinions and stories.

Lauren, you’re so young to be dealing with this and I’m sure it seems overwhelming to you. I would seek as many opinions as you can. You just need to feel comfortable with your doctors and confident in their skills. And like Nicole said, if it is relatively safe to remove it I would definitely be leaning in that direction. But only you can make that decision. Incidentally, my AVM was in my occipital and parietal lobes and my vision was affected. But, I had a bleed and most of my issues are the result of the bleed and not the surgery. My neurosurgeon told me that he believed he could have removed it and I would have very few deficits. I didn’t know I had an AVM until it bled. Good luck to you in your decisio making process. And welcome to the group!

Hey Lauren,

I am 26 yrs old and I just found out about my avm in feb. I'm having a hard time dealing myself. I have my first angiogram on April 1st....My avm is at the same location as yous...i experience daily headaches and some blurr vision here and there. My doctor is all for embolization and then surgery to remove my avm....my plan may change after the angiogram but ... I'm scared to death about whats going to happen over the next few months..I have no idea what direction to go . i guess taking it one day at a time is my best advice and surround urself with the people who support u the most. So people arent as lucky as us to have the chance to removed their avm at least we have that option. Good luck and please keep us posted

HI Lauren,

Technically (I think), your neurologist should be the neutral guy in your corner to assimilate all your treatment options, evaluate them based on YOUR AVM, then help you decide on a course of treatment. That has worked well for us.

Typically, I think a surgeon thinks surgery is the only answer, while a radiologist thinks radiation is the only answer.

If you go to a group that has BOTH, then I think you get a better collaboration of what would work best for YOU.

2nd opinion sounds good, but the risk is it will be 180 different from your 1st opinion. Key factors are how many of my type have you treated and what is your success rate.

Hope this helps.

Ron, KS

hi LAUREN I JUST MY SURGERY ON MARCH 15 OF THIS YR. MY AVM WAS IN MY RIGHT FRONTAL LOBE. THE ONLY LASTING EFFECTS I HAVE IS I HAVE LOST MOST OF THE MOVEMENT IN MY FORHEAD (CAN'T RAISE MY EYEBROWS OR WRINKLE MY FOREHEAD). I ALSO HAD A CHOICE OF THE GAMMA KNIFE BUT WASN'T WILLING TO WAIT AROUND LIKE A TICKING TIME BOMB TO SEE IF THE AVM WAS GOING TO RUPTURE. LIKE YOU I AM ALSO A STUDENT AND HAD TO PUT MY EDUCATION ON HOLD TO HAVE THE SURGERY. I AM OBVIOUSLY STILL GOING THROUGH RECOVERY. BUT HAD ALSO MADE THE DECISION ON SURGERY BASED ON THE THE FACT THAT I HAVE 4 YOUNG CHILDREN AND WASN'T WILLING TO RISK NOT SEEING THEM GROW UP. MAKE THE DECISION BASED ON YOU AND NO ONE ELSE. I LET MY FAMILY AND FRIENDS KNOW WHAT MY OPTIONS WHERE AND THE RISKS AND LET THEM HAVE A SAY, BUT TOLD THEM IN THE END I WAS BASING THE FINAL DECISION ON WHAT WAS GOOD FOR ME AND THATS WHAT U NEED TO DO. BEST OF LUCK AND ARE PRAYERS ARE WITH U!! KEEP US INFORMED ON YOUR PROGRESS. WE ARE ALWAYS HERE!

Hi Lauren. I agree completly with what Trish and Ron had said.

That is a tough desicion to make. There are pros and cons to both types of treatments. However, there are many people here who have had good success from each one of them. I would look into getting another opinion from a doctor who has your best interest at heart. Do some research and ask your doctors as many questions that you can think of. The more knowledge you have, the better you can make a decision of which treatment to have. Needless to say, I believe the most important factor to consider (in my opinion) is; "What are the possible side effects?" and "What is the risk of getting said side effects?"

The radiation is a simple procedure. Most people are back to doing there normal things in just a few days. Even though the radiation stays active in your body for three years. The avms start shrinking way before that. ( Mine showed shrinkage in the first year). Good Luck :)

It really depends on the size and location of your AVM as to whether Stereotactic Radiosurgery (SRS) is needed vs. regular surgery. Mine was deep brain and large so, traditional surgery was not a viable option. I had SRS one year ago and my AVM was occluded in 6 months. I had complications with brain swelling one year after SRS, but not everyone has complications. What you should be investigating with your Neurosurgeon is which is best for you individually…and talk to a Neurosurgeon vs Neurologist. They both come with possible complications, but you are young, so recovery is in your favor. I would also digitally record your dr appts, so if you need to go back and revisit info…you can. Good luck!!

My AVM isn’t neural, so take this advice for what it is. I’m a research scientist and the biggest thing I’ve learned both with my treatments as well as my research is this:

A neurologist is going to do what he does best. Neurological work. The radio surgeon will always recommend radiological surgery. My AVM is untreatable with radiation or I would have signed up for that immediately. My only point is take both doctors advice with that knowledge, it makes a difference. I guarantee you that if you went to an interventional radiologist, they’d recommend embolization too.

Be comfortable with the risks, and if you need to go back and ask more questions…ask. I can’t stress that enough. I never leave a doctor’s office till I know everything that I need to know. Writing my questions down helps, especially if I have to go alone.

Hi. I was in that situation when I was 16 (i'm 20 now too). Me and my family all agreed to go with the surgery, as my surgeon was very confident with it, and I don't think I could of bared a 3 year procedure. The surgery was a success and i've only had minor side effects in my vision, speech and memory (though they were probably caused from the bleed more than the surgery).

It has been a long recovery and even to this day I don't feel like I use to, but I am glad I am alive and that my AVM was COMPLETELY removed.

best of luck!

Hi Lauren,

The good news is your not in an emergency situation and you have time to do your research.. I did and went back and forth on GK, CK and embo+resection. Like others have said each doc will recommend what they believe in or specialize in unless it is obvious one is not a good option. I recommend getting more opinions from the best and well recommended docs you can find and ask them why in detail?. Compare notes and go with what you feel comfortable with. Best luck to you Lauren.

Hi Lauren,

Try Prof Michael Morgan at Macquarie Neurosurgery for an opinion. They work out of Macquarie University Hospital, and he is recognised worldwide as being an authority on brain AVMs. I was also involved in some research program being conducted, as my AVM was discovered purely by accident. I took the resection option rather than the 3 year irradiation treatment that may/may not work. Whichever way you go, always take someone with you, so they can jot down things you may not have absorbed during your consultation. There are lots of us here to stand by you.

I agree with Nicole get rid of it im a full time firefigther i choose crany. it will be gone forever radiosurgery is less invasive but it will take about 2 to 3 years. I have my surgery march 1st this year im going back to work on april 11th 2011 full duty with no restriction but every person is diff. good luck with your decision and god bless!!!

Surgery is quick and to the point. I am happy that is the treatment I chose, but I would say get another opinion. Maybe that would help in your decision. This is your choice and get as much input from doctors as you can. Hopefully this might help in making your finial decision.

I was 25 when I found out about my AVM by accident. After reading a LOT of different people’s thoughts and such on this site I decided to get the surgery. Some have said that other issues can develop form radiation. I had 2 surgeries one to embolize it and one to remove it back to back. It;s scary, but not as bad as you may think. I also have some SEVERE mental illness including mood/anxiety disorders. So I know how you feel. Honestly think of it this way. If you decide to get it taken out…you are doing it on YOUR terms not your body’s My avm was about to burst when they got in there to take it out, so I was lucky I caught it just in time. Just something to consider. Find a surgeon you are comfortable with discuss different things and go from there.

Hi everyone,

Thanks so much for your input and your personal stories. They've all helped me become more comfortable with this decision I have to make. I'm definitely leaning more towards the physical surgery at this point in time, but I'm going to get a second opinion as I'm still not wholly sure. I always was indecisive! My main lean towards the physical surgery at this point in time is the fact that the radiosurgery takes such a long time to be effective, and I still have that increasing risk of a hemorrhage. With my anxiety disorder, I don't want the next three years to be spent having panic attacks every time I get a headache, or my eyes are a little tired.

Again, thank you to everyone who has shared their stories with me. It's comforting to know that I'm not alone whichever way I go with this. Take care.

Lauren,

I'm so sorry you have to experience all of this! I was in a similar situation a year ago and it took us about 3 months to make a decision after talking to several doctors. I am 35 and we found my AVM by "accident" too. Mine was asymptomatic and in my left occipital lobe. It is about 2X2 cms. We heard the same thing, one doctor said surgery, one said embolization, one said do nothing, and some said Gamma Knife (which is like the stereotactic radiosurgery). What helped us make the decision was we found a couple doctors that we trusted who both recommended Gamma Knife. So I had the procedure a year ago and I haven't been for my follow-up yet. I thought the wait would be hard, but after the procedure we were relieved to have made the decision and then went on with life. Take your time, talk to several doctors and pray for peace about a direction to proceed. It may not feel like it, but you are in a fortunate spot to be asymptomatic. You have time and choices! Based on my experience, I am pro-Gamma Knife since it is less invasive. You have to make a decision that is best for you and your AVM is unique and only your doctors can give you really specific advice. Good Luck with everything!

Rebecca