I first learned of my large cerebral AVM when it first ruptured while at the gym in 2010. Luckily they could use embolization, a coil and clips to save me with no residual side effects- I went back finish my undergraduate degree at 20 years old living a normal life. 9 years later I suffered another rupture, again while lifting weights at the gym. Clearly the gym was not good for me however doctors were not very clear about this. Once again I was lucky enough to be saved on my 30th birthday via embolization. Doctors did tell me that I needed to get the AVM out of my head as the likely hood of more ruptures was getting higher after the last 2. Unfortunately I am not a candidate for gamma knife as the AVM is too large.
I was recommended to see one of the worlds best AVM doctors in Germany who practices intravenous embolization, so I did this. This procedure carried a 1% chance of complication I was told. during one of the interventions I suffered a complication that paralyzed my entire left side from stroke. After 3yrs of rehab I can finally walk again however my left arm/hand isn’t very useful.
I still have the large AVM and carry the 2%+ compounding annual chance of bleed
Unfortunately I don’t know how to proceed with more intervention as once you experience a complication that can maybe ruin your quality of life it becomes more difficult to compare to death. Is. Would I prefer to walk around with the bomb or potentially risk being blind or wheelchair bound…
Has anyone on this blog suffered brain complications from embolization and continued to receive intervention even after recovery from the complications?
Shit - sorry to start off that way
But, what you’ve described & went through is what builds my daily anxiety.
My AVM blew the first time in my life I went into a sauna, going on three years ago now. They did an Onyx Copolymer only embolisation - by an act of pure puck & modern medicine, it took 100% on the 1st try.
I am also an avid gym goer, I have turned it down a bit but I lift more for a warm up than most do for pr’s.
What to do now - is all up to you. As it is up to me to continue going to the gym & working a physical job which is possibly more labor intensive at times than me lifting
Shitty to hear you’re going through this. My AVM is in a very bad spot for them to remove. It’s 1” straight back behind my left year, towards the back of my head. My ear would have to come off if they had no choice but to open me up.
I can tell you this, I never stepped foot in a sauna again. Same here tho - I asked my neurosurgeons if I can go back to lifting. They told me 3 months of nothing over 10 Lbs. It took another year or so to climb back to my PR’s - which I hit, then backed off a bit. But, I still do workout hard.
That’s all I can add really
Hi JA, I haven’t had any embolizations but I have seizures due to scar tissue from 2 craniotomies. I like lifting and it allowed me to wrestle in high school. Being older now, I still enjoy exercise but my goals are different.
I’m able to distinguish what is “ME” and what is my body. Obviously pain crumbles this wall of separation temporarily. That also causes me fear. And fear affects my decisions.
I can tell you set yourself a high bar. Maybe your body has different ideas. Fear won’t change that. It needs to be balanced with common sense.
“Quality of life” isn’t a fixed thing of course. Your good spirit and optimism is apparent. (You focus on your “luck to be saved…”. You don’t focus on anything negative. (Except maybe that compounding likelihood thing which I don’t buy.)
My only recommendation is to continue being you-- it’s easy to see that “YOU” are a good person even though your body is misbehaving. Best wishes, Greg
I think it is still quite rare for AVMs to be treated with embolisation alone, so we may get one or two people reply but I think, as far as embolisation is concerned you’re a long way towards the leading edge of technology at the point you had your 2010 embolisation.
Have you had recent advice from a neurosurgeon as to your options?
I’d say also you could get a second opinion. In the States, you can get remote second opinions from the major neurosurgery practices, which may be a way to getting an indication as to whether it is worth travelling to somewhere like Barrow in Phoenix or Mayo or Stanford or such places for a more in-depth consult.
Regards any type of intervention and there being complications mid-op or post-op, I’m sure there are more of us who could share their experience.
9 posts were merged into an existing topic: Embolization Experience
We’re going off-topic a bit so I’ve separated our recent conversation into it’s own thread here: Embolization Experience
If anyone has experience of the concerns that @JA399 mentions above, it would be really helpful to reply below.
Hi there. I haven’t suffered complications - because I haven’t been treated for the very reasons you give. Part of me does wonder if I’m loopy not to even be seeking treatment. But another part tells me to steer well clear. I don’t have a good prognosis for treatment and am unlikely to be cured. I suffer very little from day and day and don’t have the deficits I know a lot of members suffer from. And the last thing I want to do is make things worse for myself. So I have made the decision to leave my AVM be - although I’ll have to take whatever is coming. Very best of luck with it all though.
I too suffered a rupture during my embolisation procedure that paralysed my left side. My leg and face have made an amazing recovery but I have also been left with a less than useful arm/hand! I went on to have gamma knife surgery last year and will find out in just over a years time if it’s done the job.
Thank you for sharing your experience as I feel like the only one on earth that got stuck with this situation. After your long left side rehab experience how were you able to decide to continue with risky intervention?
I think my AVM is still too large for radiation to be effective but still my understanding is radiation is still risky for complications
I’m so happy for you that it worked out!
Any thoughts or advice is appreciated
I think it’s fair to say that there are no interventions out there that don’t have risks attached to them.
Do you know what your “complication” was with the embolisation? Typically, this can be dropping a blob of glue (or other embolic material) in the wrong place (or it moving during the procedure due to high flow blood) or it is also possible to tear the artery wall with the catheter. In any of these cases, I think you’d have to go with “bad luck”: it doesn’t mean that a further embolisation would do the same (though the risks are always present). Sometimes having done an embolisation, the route to approach for a second time has been closed off, so repeat isn’t always feasible (or can have additional risks, for example taking a transvenous approach rather than a transarterial approach; normally a transarterial approach is preferred).
In a similar way, gamma knife carries a risk of zapping more brain than you’d want, or oedema (swelling) occurring at the site (there may be others but these are the main risks, I think).
And open surgery is clearly a major assault: very much the best option for a lot of people but clearly complex.
In general, I think the guide to take is that of the neurosurgeon as to which is the lowest risk / best outcome for your situation but the icing on the cake is always which one of the viable options you can see yourself dealing with the best. And it is also often recommended (by hard experience of patients on this forum) that more than one specialist’s opinion is good to have.
If there’s any way we can help you get to how to make the best choice for you, we’ll try
For me it was an easy decision, I was left with only a small nidus remaining as I had a craniotomy 2 days after my embolisation and resulting complications which removed the big majority of AVM. The possible complications of radiation were outweighed for me by my personal circumstances. I was 31 at the time and desperate to put this chapter behind me and to be in a safe position to start a family with my husband. As it happens, nearly 12 months down the line I’ve had no side effects from Gamma whatsoever and I’m currently 5 months through a healthy pregnancy. Such a tricky situation to be in and I emphasise with you but for me it came down to a case of wanting to finish the job!
Hi Chee. Glad to hear about your success and your pregnancy after what must have been tough times with your AVM.
I too have just had right temporal lobe AVM embolization where the surgeon says blocked about 90% of it. I am scheduled for another AVM procedure in two months followed by radiation to eradicate it completely. The worry of any remaining AVM and the focal seizures it was causing me would be hard worse than the risk of complications. I am going to go for it like you did.
Enjoy your impending little one.
Hi, my AVM was diagnosed accidentally from a CT scan. It is deep in the Brain Stem area and large, so surgical removal was not an option. It was diagnosed when I was 49 with no previous history. Doctors suggested embolization in 2 procedures. 1st procedure went very smoothly. During the 2nd procedure I suffered a stroke right in the OR and during surgery. Luckily doctors could treat me right away. My left side was paralyzed but physical therapy helped me recover 95%. Then after 10 years, I could not navigate from one place to another. I had NO headache but I had a bleed. I went to the same doctor as before and got embolized. I have no deficits now! I get my annual MRI done just to keep an eye. The only restriction doctor gave me is not to lift heavy weight. My surgeries were done by Dr. Vez with Global Neuroscience in Philadelphia.