I had brain surgery to remove my avm and it was relatively successful but people who had embolisations, who I have spoken to or met have had serious complications. I thought the surgery would be the most dangerous but looking back I think it’s the safest compared to embolisation… I know many may not agree and I understand this but one had blindness, another eye bleeds and the third didn’t make it. Just thought I would put this out for discussion to see what your thoughts are on this.
This is a question worth discussing, Rich, though I'm not sure there is a definitive answer yet. So much depends on the nature of the individual avm (size and location), who the doctors are, and the patient's general condition. It is always good to get several opinions and to ask why each doctor is recommending one approach rather than others. There is an emotional component, too -- surgery feels right to some, and not right to others.
I do feel sometimes that risks are minimized for embolization and gamma in a way that they are not for surgery, and that patients are taken by surprise if there is a complication.
Hello my friend,
I had 2 embolization. After first: Paralyzed left leg, numbness complete right side. After second completely paralyzed (paraplegie) for some hours, and from there bladder and obstition problems. So they made a emergency surgery (laminotory) : Perfect, no problems. So in my case (spinal dural av-fistula) the surgery was better for me.
And 10. June I have my second surgery.
Regards Michael
10th of June - not long now Michael… Hope all goes well for you
I wounded if there is any research data into this giving comparisons between the two … 
Endless research data, piles and piles of it -- this report has a lot of information (and some speculation) about this issue:
I want to add a couple of things. Embolization is only curative if the AVM is very small. Even then the AVM can recanalize, particularly if the patient is young or there is a subsequent pregnancy. The AVM still exists after embolization, though it is occluded. That is why often embolization is a precursor to surgery, not a stand-alone treatment.
Complete surgical removal is permanent. If an AVM "comes back" after surgery, either it was not completely removed, or there is a genetic condition that could cause the formation of new AVMs.
Radiosurgery can completely remove an AVM, but sometimes it doesn't. We have members who have needed all three of these treatments to completely eradicate an AVM.
Thanks dancer mom.
Love the link, gives a very good insight and an interesting read
Thanks Dancermom,
Yes in the article they say:
Embolization before SRS may obscure the delineation of the AVM by superimposition of embolic material and the presence of collateral feeding vessel
My doctors told me that too, but more important for them was: The embolization material helped in the surgery cause it shows where to go (laminotory spinal cord) exactly... Kind of identification. And the embolization is the first thing.
Hm... Hope you understand what I mean in my bavarian english...
Regards Michael
Like dancermom said, a lot of this depends on the size and location of the AVM, but the first neurosurgeon I saw told me he recommended I be treated through 5-6 embolizations. But he was certain I would have neurological deficits from the treatment. I saw a second more experienced neurosurgeon who said he believed gamma knife (and follow-up surgery if all goes well) was the best option for me. So I definitely went with the treatment option that wasn't certain to leave me with deficits!
Good job you had a second opinion
I definitely feel some avms will do better with different treatment I’m so thankful we have several options nowadays. My personal feeling is I do not want embolizations, I’m not a fan of radiation either. The fact my avm is in my brain keeps me nervous about side effects to good brain matter. If I get to choose my treatment, I’m going for craniotomy. I am allergic to adhesives and break out from band aids, don’t really want to find out how my brain reacts to glue. While anything going on in my head is unpleasant I know I’m blessed to be alive and God will give me peace with the decisions. While researching treatment options, all made me uneasy except craniotomy…
Hi Rich. Is embolization the safest??? I think it depends on many factors, such as the location and size of the AVM. If unsure, get a second opinion and/or discuss with your doctor asking him to explain the risks versus benefits of both. I had an embolization on 2/22/13 which was successful in shrinking the AVM by 50%. There are significant risks with any invasive procedure, whether it's embolization or craniotomy. The risk of injury to the specific area of the brain depends on the specific area of the brain that they are working on. On 4/23/13 I went in for repair(coiling) of a large aneurysm and a repeat embolization. Because the repair of the aneurysm took so long they removed the catheter and did NOT complete the 2nd embolization. On 4/29/13 I was re-admitted to the hospital with a blood clot to the lung. This is a COMMON risk factor in any invasive procedure. Unfortunately, sometimes we only hear the bad side of things. A perfect example... when I was pregnant with my first child, because I was told how horribly AWFUL and painful labor was; I had NO IDEA that I was in labor until I went in for my regular maternity check-up. Bottom line, don't just listen to the horror stories. Best wishes to you.
agree on horror stories!
Dancermom-
Thank you so much for the link and all of your valuable insights. I truly appreciate it.
Hi princess - I have had the craniotomy in april this year and I’m just healing with a few non perminant issues and the other people in at the same time having the same procedure are all fine with no perminant damage however three people during the same time period having coiling and glue had perminant damage to eyes and one sadly died. My post was to see if craniotomy could be safer than glue, coiling. Common sense would point towards brain surgery as being the last option but given what I have seen it appears to be the less damaging. That’s why I put the matter up for discussion to see what other avm survivors think about the subject… Rich
Hi Rich,
A few years late, but I just wanted to reply to this and share my story. I actually read this thread prior to my embolisation and it frightened me beyond words!
I’m 26 and had a small AVM embolised two weeks ago at UCLH in London. It took me over a year to decide which procedure to go forward with. My AVM luckily hadn’t ruptured and was in a ‘superficial’ location on my left frontal lobe.
My embolisation went extremely well and the surgeon is certain it was completely obliterated (follow up angiogram to come soon). I spent two nights in HDU then one night on a surgical ward, then I was home watching TV and relaxing!
The only side effect really is fatigue (as expected). I was worried about sight loss, speech loss etc. In fact I was worried about absolutely everything. When I told my neurosurgeon this, he actually laughed at me!
This site is great in lots of respects but also put the fear of God me in sometimes…
Neurosurgery is petrifying and everybody’s stories shared on here are amazing. However, I hope my positive story will put another worry pants at ease as it’s very easy to get caught up in the negative.
Take care all,
Elena
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