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AVM Survivors Network

Embolization Experience & Advice Please


#1

Hi

I was born with a frontal, temporal & orbital AVM on my left eye.

I’m due a pre op on the 3rd Monday December and 4th Tuesday Embolisation.


#2

Welcome! Its great you’re here and sounds like you’ll have a lot happening over the next while with treating your AVM. We have a number of folks here from the UK who have gone through a variety of treatment including embolization. I’m not that tech savvy to link them directly and just realized I must learn this! Feel free to ask this group any questions you may have, and again thanks for being here! Take Care, John.


#4

A post was split to a new topic: Well Done


#5

Hi. I had an embolization of my DAVF in April 2017 and I would describe it as “ok”. I’m not very good at surgical things, so the idea of a craniotomy would have scared me witless (same as anyone else) but to my mind, an embolization was a good idea… minimal invasion and see if that did the job before we get any more serious. So I think embo is a good option. Do you feel ok about it? Is there anything you want to ask about it?

I would say it is quite uncomfortable but with plenty of meds post op, I was ok. When I look back at my notes, I do describe being quite uncomfortable but I feel it was eminently gettable-throughable. Nothing to worry about! :slight_smile:

@corrine has a much more extensive AVM than me, has had an altogether tougher time, and has so far only been able to reduce her AVM in size, rather than obliterate it completely. So there’s definitely a scale to it.

I think my favourite advice for angiograms and embolizations is to remember to properly hydrate in the day or two leading up. You’ll be on nil by mouth from some point but up to that stage, I’d say remember to stay nicely hydrated.

Good luck! Will be thinking about you next week, so keep us posted if you will.

Very best wishes

Richard


#7

How are you feeling about it? I think it’s a good thing to stay calm about. Sclerotherapy is something I feel is more often used for extremity and facial AVMs, so when it gets to that part, I hope some of the @Extremity or @Facial folk will be able to support.


#10

Hey, this is normal! It is undoubtedly a big decision to go for treatment or not and I don’t understand the risks of your operation compared with mine, so I don’t want to push you into treatment. I do want to encourage you that, while none of us know how these things will turn out, the doctors will (I am sure) not be recommending something that has unreasonable risk.

I bothered about this at about the point of my diagnosis: if I am offered an op, do I take it or do I wait for the risks of leaving it to outweigh the risks of the operation and then do the op? It’s a very personal choice. I decided that to sit and wait for it to get worse, until the point that my “leave it be” risk was at least as bad as the risk of the op was crazy because, if was planning to have the op anyway and I was just delaying having it, I was just living with more risk in the meanwhile. I would still face the risk of the operation at some point. So in some regards, my question was “do I think my AVM is going to stay ok for ever (and I can put off an op for ever) or do I think I’m just choosing when to have the op?” So I went for it. In my case, I got more poorly as I went through the wait, so I was absolutely sure I needed the op by the time I got there (but I was probably still just as bothered as you, just because it is the unknown.)

Decide in your own mind whether it is important to have the operation. It needs to be important.

But we’ve got lots of people here who’ve been through these things and have come out well. We live in an amazing age when these things can be operated on.

Very best wishes,

Richard


#12

You sound a bit in conflict. Are you ok?

Your pre op is tomorrow: is that like a 1 hour visit to the hospital to go through some checks or are you expecting to stay in tomorrow into Tuesday? My pre op was about a week before and was about an hour of faff in the hospital, then home.

Hope you’re ok. It’s absolutely normal to be rather bothered about it all.

When you get to hospital, the only thing to do is just do as they tell you. Turn up at the right time in the right place and they just take you through it. Nothing is rushed. Hopefully you’ll find it nice and relaxed. That’s the idea, anyway.

All the best,

Richard


#14

Will be thinking about you. It’ll be fine. Main thing is to be positive and relax. I’m sure you’ll be uncomfortable afterwards but the drugs are good and none of it is impossible.

Will be wishing for everything to go as smooth as possible.

Richard


#15

Awfully sorry that I haven’t chimed in before. Let me throw some thoughts out… First, I’ve had embolizations 4 different times - 1978, 1986, 2009 and 2018. 1978, Embolization was a small part and surgery was the main thing. Clipping blood vessels and removing them - I still freak out x-ray techs for all of the clips in my neck and shoulder. In 1986, had 7 different embolizations and a surgery. Two significant complications - both of which were due to the relative in experience of local medical staff with embolizations, neither of which caused more than a 4 to 6 week delay in returning to health. 2009 was a one Embolization to deal with one blood vessel that was causing nerve pain in my shoulder.

Fast forward to this year. January 30, I had a massive Embolization - 30 coils and “bottles and bottles” of super glue to block a portion (a very large portion) that was at a signficant risk of a brain bleed. The results were successful, the side effects were and have been life altering. Headaches, balance, noise in my head, hearing loss, speech issues breath issues…

Ever since the first treatment, we have been constantly living with the “risk vs. Reward” scenario. Which is riskier having the Embolization or not treating it?

Except for this last one, my symptoms have basically been a week or two of weakness, fever, achy and I ended up with some associated muscle weakness - because muscles and nerves were often damaged.

I think that’s all I’ve got for now, if I can help further, let me know.

TJ


#16

Hi there, sorry to be so late to join this conversation!

I have a left occipital brain AVM, I was told 4cm but every report describes it as “massive” and “huge” so I think it was bigger.

I was similar to you leading up to my embolisation. I hadn’t been diagnosed until May 2017. My health was deteriorating over the years prior to diagnosis which proved to be gradual brain damage due to the high flow of my AVM starving my brain. This brain damage caused perminent lower RHS vision loss in both eyes. I also have occipital seizures. Voice recognition loss in my left ear is also being investigated as to potentially being due to that part of the brain also being starved too. What you describe sounds exactly how I felt - drained, zombielike, depressed, insecure and not “me” anymore. Migraines became more and more frequent.

My embolisation was given to be: 5-8% risk of stroke with potential of vision loss, communication and RHS paralysis, 1% chance of fatality. My embolisation was risky, since my AVM’s flow was so high the time it was going to bleed was imminent. The delay was due to 2 national UK meetings discussing what to do with it and finding someone willing to do it.

So I had the embolisation on January 26th 2018. I wasn’t told how dangerous my AVM was until the day due to a organisational screw up. So leading up to the embolisation I was nervous but went in calm on the day. When I was told the news and given 10 minutes to sign or not sign the consent form I was a mess. I knew this was my only option of treatment and that waiting to reschedule just wasn’t really an option for my case, so I signed it.

My embolisation suceeded in lowering the flow of my AVM but didnt go according to plan. It failed to fully close down my AVM. During the op my AVM burst. I had a bleed in my left occipital lobe causing me to develop more RHS vision loss. This extensively affected my visual processing and mobility. I also had two small bleeds in my right posterior and anterior temporal lobes. This has affected my memory and could potentially explain my hearing issue. I have chronic fatigue but I’m alot better at managing it now and making the most of my energy.

Post-embolisation because of the op taking 8hrs as opposed to the planned 2.5 hour max, I had over-radiation. This caused me to lose all my long thick hair on the LHS of my head. I also gained alot of weight both in the months leading up to my embo and following my embo. This was mainly due to comfort eating and lack of mobility due to exhaustion.

However, regardless of the bleed - I am alot happier since my embolisation. My mind is clearer, I can actually concentrate on things now. I can process conversations and speak without it being incoherent. Weirdly since my surgery; for the first time in my life I can read out loud without pausing and stuttering. I feel better in myself, I am disabled now, but I feel free in my mind and in some ways actually improved. I feel more determined that ever to suceed in my goals and be proactive about working towards them. Most importantly - no more migraines!!

My hair is now even, short but thick and I’m so grateful for that. Ive lost a fair bit of weight. I’m fit enough to run again.

My point is, even if things did go wrong, it is a temporary struggle. It does get better. You adapt, grow as a person and feel better in yourself. Keeping “this is a temporarily struggle” focused in my mind is what got me through everything. I have no regrets about my embolisation at all.

Unfortunately my AVM is only smaller but still there. Ive been told they don’t want to do any more because embolisation + GK won’t work. The remaining part of it is deeply nested in the past of the occipital lobe that controls my RHS central vision. I’m on the hunt to find out more about differant opinions on potential of someone else treating it and the risks involved. Craniotomy will 100% cause total RHS vision loss because they would have to chop out the remaining part of my left occipital lobe that still works. But im now aware whatever happens as long as I’m alive, I can adapt.

I hope this helps instead of freaking you out. Just wanted to give an example of a embolisation that didn’t go according to plan. These changes for me arent nearly as bad as I had imagined it would be pre-embo - back then I thought I’d be the end of the world!

Feel free to ask any questions you may have.

Thinking of you on your pre-op today.

Corrine


#18

All

For anyone following this thread, I thought I’d report that I’ve had a message from @anon22286880 to say they are safely through the embolization.

Richard


#20