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AVM Survivors Network

My treatment options


#1

Hi everyone,
I saw my neurosurgeon in Sydney yesterday and he explained my options in detail to me. The first option is surgery to take it out, the second Gamma Knife and the third do nothing. They are recommending surgery as it is an unruptured Grade 1 AVM that presented with a seizure. The Grade 1 is the Spetzler grading but I get a 5 out of 10 with the other method of grading. I am 55 so maybe my age could be a factor. Anyway, trying to make a decision that I feel confident about. Any comments most welcome:)


#2

Hi, Carol, we can't select a treatment for you, of course, but I hope members will share their own experiences with treatment or with watchful waiting. Just curious, what is the other method of grading?


#3

Hi dancermom

I think it could be Lawton or something, maybe its a supplementary grading system, He said I got 5 out of 10 for that but he didn't think my age was a problem really. I was looking at things on the ARUBA study, too much Dr Google I think...ahahah. Its a difficult decision for sure.


#4

Macquarie will treat you to the best there is in Australia. These are daunting times, but Prof Morgan will only have your best interests at heart. Stay positive and choose what feels the most comfortable for you.
Positive thoughts to you.
Tone


#5

Carol, I saw your comment on my post and appreciate it. What made my final decision is when I sent all my "stuff" off for a 2nd opinion. It was to the Barrowman Institute in Arizona. The neurologist there sent back info that my AVM was very "accessible" for surgery, and it should be done since it looked like there were some problems with it. That scared me because I did NOT want to have another brain bleed. Both docs said that leaving it there would be the worse thing to do. I hated the thought of the gamma knife because of radiation in my brain and the fact that it would take 3-5 years to know if it was obliterated. I had to get it out and KNOW it was gone. My doc said that when they went in to the AVM, it did bleed a lot. (I had no embolization done because of problems of getting to it through an arteriogram). When I woke up after my 4 hour surgery, my doc was very confident that he got it all (it was small), and he told me I was borderline for having to be given blood, but they did not and I built it back up. An arteriogram the next day confirmed that the avm was obliterated. Surgery is scary, but you definitely do not want a bleed or more seizures. Things will work out and you will be fine. Please keep us informed on what you do and how you are.


#6

My neurosurgeon also said that my Grade 1 AVM could be removed easily by surgery. I researched other possibilities myself as he said I only had a 65% of it being obliterated by GKRS. However when I spoke to Sheffield Hallamshire they gave me a 95% chance. I hadn’t had a bleed and my AVM wasn’t complicated. I was also put off by the 3 year wait but also worried about the side effects of Brian surgery. I opted for GKRS and have had no side effects. I got the all clear last year with a complete obliteration. I’m happy to answer any of your questions.


#7

Hi Carol,
This is a very difficult decision to make. I really expected my doctors to give me a "recommendation" of what to do. But they did not. I sent my scans for second, third, fourth opinions. I read the ARUBA study and also argued with my doctors about leaving alone the unruptured AVM. They listed the options and told me, you have 90%+ chance to do well with gamma knife or a craniotomy. You could also let the AVAM be.
I think that the decision mainly depends on how knowing that you have an AVM has affected you. In my case, I learned about it in February of last year, before taking a trip to a developing country to do some field work in the middle of nowhere. When I went back there two months later (I'm a development economist and evaluate social programs in developing countries), I thought that I could easily die in the middlbe of nowhere without having a chance of getting a neurosurgeon to save my life. That was enough in my case. I could not live knowing that I have that ticking bomb on my brain. I just didn't want to stop traveling for so long either. I got a craniotomy in June of last year. The procedure went very well, but I was absolutely anxious about the whole thing until it was done. I think I made the right decision, but of course, it was a difficult one. Even with a 90%+ chance of everything going allright, you never know if you are going to be part of that <10%. I was tired and sleepy during the first three weeks after surgery, but slowly healed. My AVM was close to the area of the brain that affected my peripheral vision and it was certainly affected. I didn't feel comfortable driving for the first 4 months, but now I am back on the wheel and feeling better than ever. Whatever decision you make, stay positive. Good luck and keep us posted!


#8

I went with the surgery option just over 3 weeks ago .i had a left frontal lobe avm and the worse thing about the after effects has been the numb feeling in my head .im back to doing the school run cooking and cleaning it’s been easier than I expected and my surgeon says that’s down to my attitude I just wanted it over and to get on with my life .I was more worried about it rupturing and me having a stroke or it being fatal I’ve 4 kids and I’m only 38 I’ve got lots of life left and 1 day grandchildren .good luck with whatever option you choose x


#9

Hi Carol, I think its good to have a choice :) , But obviously if we could we would all have chosen not to have AVM's !, But having them and also a choice of treatment can only be a good thing. For me I was told my choice was surgery as my AVM had already ruptured and this meant that there was a greater chance of this happening again, The thing that most people agree on is that a rupture is worse than surgery, As a person who has had both I think I agree with that. As Dancermom said before we cannot tell you what to do, Only you and your Doctors can come to an informed decision based on your personal health circumstances. Also I have to say at 55 years old your still young :) , Take care and let us know if you come to a decision.


#10

Hi Martin
Yes, I am very fortunate to have a choice as I haven't had a rupture as yet. I saw my neuro again last week and he did say "the risk of doing the surgery is lower than the risk of doing nothing. Funnily enough he did say I was still young and had many years ahead....ahahahah. Its a hard decision to make for sure and it also impacts on everyone around you as well.


#11

Carol, I had an avm which was operated on by embolization on August 19. Unfortunately, because it was in such a terrible place (base if brain ) I had a mini-stroke which caused total loss of balance, speech, hearing,coordination and cognition issues. But with three weeks of inpatient, and about 7 months of outpatient rehab, I returned to work after only four months. I had a gamma knife treatment in November because the surgeon was not satisfied with the embolization, and will do an MRA this summer. I can only tell you that they were so caring every step of the way, and kept me as comfortable as possible during the gamma knife. I had some wicked looking eye swelling for about one week after the gamma knife, but would not trade it for anything. I learned to drive again, am swimming, returned to the gym, and am an elementary school teacher. I am proud to have walked this earth for 54 years and wish you the feelings that I have-I have been given the most special of blessings and now my avm that did not rupture was found before disaster struck.


#12

Hi No3tym

It sounds like you are doing very well after 3 weeks, wow! I have thought the same thing about a rupture or a stroke, it is what is pushing me to make a decision so I can move on with life instead of going round and round. I have one grown up daughter of 24 and she said to me "mum I don't know why you think you have options"!!....as in get it done:) thanks so much for taking the time to reply:)


#13

Hi Louise
I too have a Grade 1 with superficial drainage, when I saw my neuro he was very happy for me to see the GK people as well but seemed to think they also would recommend surgery so I didn't see them. He also seemed to think one of my draining veins was blocked or something and that I only had one draining vein, maybe that is why they thought surgery. Your story sounds very positive due to your perseverance and your own research. It gives me food for thought! Thank you for replying:)


#14

Hi Cindy

You have been through a lot with your rehab and returning to work after 4 months! Thats really good:) My mother has had 3 strokes so I know how hard they can be to get over. I am looking forward to being able to drive again in the future, also I like swimming too. Thanks heaps for your positivity:)


#15

Hi four_r
I was going to send my stuff to Barrow but haven't as yet. My neuro said mine would not be embolized, just taken out as it is Grade 1. I totally understand you not wanting another bleed and getting it out. I have been lucky I haven't had a bleed but my warning has been a seizure which I am hoping won't happen again. I think I just have to bite the bullet and make a decision and do something. At least then I will have done the best I can with the info that I have. Im glad for you that you went ahead, got it done and dusted and things worked out well:)


#16

hi there Carol. I am 58 years old and I was given the same exact options few months ago. I have an non symptomatic 3cm AVM in the right parietal. A group of neurosurgeons at UCSD in California each with different specialty, surgery, AVM evaluation and radio oncologist gave me those options without pushing me one way or another. Mine was evaluated as 2 out of 5 in terms of difficulty. I decided on the radio surgery since even though the risk is there for a long time it is less invasive. I had radiation on January 27th 2015 and up to this point except for loosing hair on the right side I have felt nothing different. Next evaluation with angio and MRI will be in a year. Good luck with whatever you decide. I had hard time to decide on doing anything at all. I am happy I chose what I did. If this was the right choice or not the future will tell.


#17

Hello Carol I am a58 year old man. I would like to share with you what happened to me.I will try to make quick.In 2010 I had a stroke that left me with paralysis on my whole left side because of a ruptured avm after brain surgery and 8 weeks in therapy I started having graml seizures and after all that I take good seizures meds and have been free for over a year. Feeling great now. Hang in there Carol have in yourself.


#18

Hi Serendipity
I pretty much got my options in a list which was good I guess. I saw my neuro last week and he answered all the questions I could think of, even the ARUBA study which I read as well. Apparently it was a flawed study I was told by the doctor. You make a good point about how the AVM affects your life in ways that you don't realise. It sounds like your procedure and recovery went very well and that is wonderful. You are able to continue travelling and getting on with life:) Thanks very much for all your comments.


#19

I have been around these kind of websites since 2002 and I know for a fact that Dr. Speltzer is awesome. I have seen his name at least 10 times and have heard how good he is.
Every time I hear of people who have had him perform their surgery, they come out perfectly wonderful. I would trust him with my life.
I had my surgery back in 2001 by a doctor in Denver,during a major bleed and he saved my life!
Gamma knife takes time to obliterate the AVM. It will do it, but it doesn't happen right away.


#20

Hi Carol,

I hope your doing well, what choice have you made? I see the Macquarie University on Monday and hope to get some good news. I'm 50 in October :) AVM very large in Left temporal lobe next to speech centre.