I am nearing treatment for a small (~1.5cm), surface avm located in the right occipital lobe with only one feeding and draining vessel. My primary neurosurgeon is recommending embolization with high confidence in cure with embolization and surgery scheduled two days later should it not fully cure through embolization. I have received two other opinions from neurosurgeons with one recommending surgery without embolization (Barrow) and the other recommending do embolization first but follow with surgery regardless of embolization outcome (local team with UC-SF background).
A less invasive cure sounds better but embolization carries risks as well. I have read there is risk with recanalization and I don't love the thought of several angios spread over the next decade to monitor.
I know every case is different but would love to hear from anyone else that may have encountered these differing views with a similar case and what approach was chosen and subsequent outcome.
Hi Mike, Believe it or not, your in a fortunate position. You have options :) , I remember hoping for Emobolisation when meeting with my Neurologist for treatment options. My AVM was small and near the surface and I had already went through a craniotomy from a bleed I suffered earlier in that year. But when we started talking he said surgery was the best option for me and that's the course he wished to do. I was shocked at the time and saddened, Barely held it together when telling my father who drove me to the meeting, Then having to tell my wife that she had to go through it all again, It was much later and 1 week out from the procedure I started thinking that maybe I wouldn't make it, Couldn't sleep at night due to worry. These I think are all normal reactions to any major surgery !. But I then started to force myself to stay positive and think positive, Shaking off the negative with a "you'll be fine, don't worry about it" type thought till I believed it. The truth is that I only wavered from this positive though for around 10 seconds as they were wheeling to the Operating Room, But again I shook it off. Well I'm not going to say it was easy .... but my 10 hour surgery was much easier than the 2/3 hour bleed one, I was out of hospital after a week and I felt fine but tired. I was back working after 8 weeks also. This message had a but of a negative start but I hope you find the positive message in it, that you'll be just fine no matter what option you choose because these surgeons that are treating you are the best at what they do !, Keep positive my friend and after your AVM is gone you'll feel like a weight has lifted from your mind !, You'll be able to start looking forward and planning life rather than dwelling on your illness. Take care and wishing you the best for your treatment, Please let us know how it goes when its scheduled.
Hi Mike,
My son just had his second emobolization and both times he had almost no down time afterwards. I have not heard of the risk of recanalization, but I will look into it. When we sought multiple opinions for my son, the common answer was always to do the embo before the surgery. We tried embo alone to see if it would be enough, which it isn’t, but we didn’t see it as an either or. My understanding is that it helps the surgeon find the avm when he/she goes in to operate. The best dr for embo in the country is in NYC-Dr Berenstein. Maybe get an opinion from him too?
Hello Mike, I had a similar avm (2cm) in the right temporal lobe with three feeding and one draining vessel. I went to Mayo clinic where they suggested an embolization prior to surgery to rule out any risk of bleeding during surgery. I also went to Barrows where Dr. Spetzler offered to take it out without any prior embolization. Dr. Spetzler prefers to do surgery without embolization for relatively simple AVMs. I finally chose Dr. Spetzler because he sounded pretty confident with what he was doing and had the surgery on 15th December. It was a 3.5 h surgery. Everything went really fine. I spent 4 days in the hospital and I have recovered well since then. The suggestions you received are understandable since embolization is seldom a complete cure and it does increase the change of a future bleed in case the entire avm is not blocked completely.
Hey Mike, as I understand it the efficacy of embolization alone in curing AVMs is not great as per the research. Without (a) being a doctor, and (b) knowing your case, I may be totally wrong but I bet your Spetzler grade is like 1 from your description. My suggestion is get it cut out man. Never have to worry about it again, and surgery in cases like yours (I think) usually only has a 1 in 10 chance of side effects. Every time you do an angiogram there's risk of stroke, and the embolization procedure is risky as well. From what you wrote, if I was in your shoes I would go with Barrow's recommendation.
BTW a buddy of mine followed such an approach with a surface AVM - back at work, no residual problems at all. Also FYI I totally went against Barrow's recommendation when deciding on treatment for my kid - his case is super complicated - so I'm not parroting Barrow in your case because I'm a fanboy or whatever.
I had three embolizations prior to the removal of my AVM (I don’t recall the grading but it was large). My surgeon opted for this combined approach to minimize complications and to ultimately remove the risk of a re-bleed. My follow-up angiogram revealed that everything that needed to be removed was removed and now the specter or a re-bleed is out of my mind. My only complaint about my surgeon was that he ruined my hairline
Hi Mike,
I had a craniotomy in September to treat a brain aneurysm. My Neurosurgeon suggested this method because, if anything were to go wrong he would be able to react immediately. In a closed procedure if there were any complications they wouldn’t have enough time to the open you up to address the problem. I know surgery sounds really terrifying and is different for everyone but, the surgery was relatively painless. It looked a lot worse then it felt. I felt like I had a hang over. I felt great and was begging to go back to work in 2 weeks.
Also, this is a once and done situation. Like they say do it right the first time.
Hi Mike. In my case embolization was never an option.
I had radio surgery when I was 9 (1984). In that time the treatment was in experimental phase.
I have survived 4 strokes, thank God I’m alive and doing well.
My AVM is in the basal ganglia. I had another treatment in 2004.
My doctor in 2004 was Dr. Reinhard Schulte, he works at Loma Linda Hospital in San Bernardino California, I’ve kept in touch with him. I trust him.
If you want to talk to me please feel free to contact me. I will pray for you. God bless
Hi Mike - I had both done. The first embo was to decrease the bleeding; and they injected what was explained like a super glue into my AVM. This did two things: decreased the bleeding and solidified it, in which it made easier to remove…and I eventually needed surgery.I was unconscious, so the choice was left to others; but, realistically, that’s what needed to be done to save my life.
Since you’re making the choice, I’ve heard really good things about Barrows; and I’m inclined to think that no matter the procedure, experience and reputation trump the procedure.
I am so very fortunate. I was in the same position as you, but I only had one opinion. My surface AVM (2 on the Spetzler scale) was on the surface of the left Frontal Lobe. My neurosurgeon (at Emory) recommended embolization followed by a craniotomy (if necessary). I went in fully expecting both procedures and was elated on day three when he said, “You’re cured.”
I left the clinic that day and was able to watch my son’s last high school baseball game.
I also had options: embolization or craniotomy or radio surgery. My neurosurgeon said embolization alone is not enough, no matter how small or big it is! I chose surgery for complete cure, had gamma knife in 2003, but AVM reappeared. I had it on 13th nov, recovery is going well. Will be joining work by mid February !
My AVM was in the left parietal lobe so my comment may not be applicable to you. I had embolization and surgery. At the time of my surgery I was in NO way capable of composing a well-organized e-mail. That being said, I think that with a top surgeon you are better off going with embolization. While I think it is usually a good idea to seek out other opinions in this case it has left you a bit confused. I usually prefer the less invasive with any procedure but maybe not in this case. You might ask the surgeon with the UC-SF credentials WHY he/she prefers surgery regardless of the embolization results. Why is his approach better than the approach of your primary neurosurgeon? Based on my experience I would opt for the most SECURE outcome which I think is surgery regardless of the embolization results.
I am not sure what is best for you. When I went through my procedures, I really didn’t have any choices as I was sent to Stanford as my last hope. I had been diagnosed with an inoperable AVM. it was inoperable because of how large it was. I had six embolizations, Radiosteretactic Radiosurgery then two craniotimies. After my third embolization I did have a brain hemorrhage and by the Grace of God healed very nicely by the care of my husband and mother-in-law. After my final craniotomy I suffered a stroke and lost all of my left field vision and it affected my left side. This all happened between 1989-1995. If you were to see me today, you wouldn’t even know I went through all that. It only is noticeable when I am not feeling well… All the emboli zing I had made the AVM operable. Good luck and God Bless!!
I had two brain AVM’s the back one was very large & complex I didn’t have an option it had to be surgery which took 21 hours. The second one was on the right hand side above my ear I did have the option of either surgery or embolisation. I chose surgery as I’d already been through it once, the surgery lasted 10 hours & I was out of hospital within a week. I would say get as much advice as possible & remember whatever you decide this is a great community who will be here to support you…massive hugs on your journey.
Hi Mike. I had the emmbolization done and surgery 4 days later to remove my AVM. (right frontal lobe.) While I wouldn't change it, I would've have tried to be more careful between my procedures. I suffered a mild stroke in the area near my emobolization between the two procedures. The interesting part is, that while I only suffer from mild tremors as a result, I can pinpoint the exact moment it happened because i felt it. I was offered the choice of just embolize and leave it alone, or to do it and the surgery. I opted to do both and as close together as we could get. mostly because I wanted to piece of mind of knowing we had done everything humanly possible to get rid of the situation. I think the only real benefit to only doing the embolization is there is limited scaring (on the brain I mean as I do have scar tissue in this area from the procedure) and that it takes less time to recover. Without knowing your personal expereinces it is hard to make suggestions. my only advice is to think each option through, discuss with your family and if you are still unsure- don't be afraid to ask the docs what they would do if it was them or a family member of theirs. Follow your instincts.
Hope this helps and feel free to contact me if you would like more info or just a soundboard.
Hi Mike,
I had a craniotomy in 2006 at Mayo for an AVM on my right above my ear and it was sucessful, thankfully. You’re wise to get other opinions too. (I had had Laser surgery about 20 years ago but that didn’t shrink the AVM). I would go with Doctor/hospital that has the most experience and research with treating AVM’s and you have the most confidence in. I went with Mayo because of their track record as I didn’t know what was best for me and you just have to have faith that the operation will be a success. Wish you the best.
Hi mike
I believe the person to consult about embolization is Proffesor Jacques Moret from Paris . He is top expert for the onix therapy. He told me that every one that sugested this treatment for my 12 years daughter’s AVM doesn’t know what they are talking about. She had AVM with about 20 feeders!!! He told me the only treatment possible in her case is surgery ! We took her thousand miles from Israel to UCSF. Dr. Michael Lawton operated her six months ago and she is amazingly well thanks to him. Proffesor Moret answered me quickly and was very officiant and kind. Please try to contact him. Good luck
Hi Mike
Personally I would go for the surgery first as this will remove the AVM completely. You will have to go back after the op for MRI’s just to make sure everything has gone and nothing is growing back, but I feel this would be better than going through an Emobolization procedure and then followed up by surgery, it doesn’t make sense.
The only thing I would ask your surgeon is where the AVM is situated and what would the risks be, post-op of any problems this could leave you with.
Take care
Regards
Stuart
Well 2 out of the 3 specialists you have spoken with more or less recommended the procedure you're going with. you'll be fine. don't worry about it. Sure, they both have risks, but they are carefully weighed-out by said doctors and they really do have the best in mind for you. I was (I guess, retroactively) worried about the cumulative risk of the lot of embos I had. Towards the end I was almost begging them to take it out. Plus one of my embos didn't turn out well, but my AVM was a "nasty customer" leaning against my brain stem. i know this sucks but our prognos(es?) have greatly improved within just the last decade.
it'll be over before you know it. hopefully, your hospital has a nice cafe too.
