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AVM Survivors Network

Surgery

#1

Happy New year to each & everyone. I would like to ask if anyone as had surgery to remove a AVM in the left cerebellum?? & if so how did it go?, any problems afterwards?.
I am due to have a discussion with a vascular surgeon on the 5th Jan to have this done.
I haven't had a bleed in the 10 yrs of me having a avm, large one obliterated in 2013, but I now have yet another smaller one growing. I don't take any serious meds, although I still have bad head-aches with blurred vision at times. Get tired easily.
Just curious if I should go for it, or leave well alone & take my chances...

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#2

Hi Tricia,

Happy New Year to you too! I'm sorry that you have another AVM growing. While you always have to evaluate the risk of having surgery or other procedures to obliterate an AVM I would have it removed if you can. My daughter had an avm in her cerebellum, left posteria fossa, and it burst. She had no prior symptoms. The recovery is quite significant in that area for walking and balance. It's obviously a big decision and smart to gather information before you meet with the doctor tomorrow. I've heard but have no idea if it is true or not that if the smaller ones burst it is worse so you could ask that question.

Best of luck and if you have any questions feel free to ask.

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#3

Hi Tricia. I have just seen your post and felt I should respond. My AVM is in my Cerebellum too, but on the right I believe. It is quite sizeable and I have been informed the only possible treatment would be at least 3 embolisations (to shrink it) and then gamma knife. For me the risk of deficit outweighs the benefits of taking any action. So I have decided to leave it alone and take my chances. Most people here don't want to do this and I can understand that. But currently I don't really suffer any deficits apart from a secondary condition (Hydrosephalus) which flares up every 7-10 years. If my AVM was removed I would still have this. Obviously I am hoping that my AVM will never bleed and some might say that is naive. But I have decided I would rather live my life 'as normal' than have to cope with deficits from treatment for the rest of my life. Noone can really tell you what to do though. It has to be your decision. Best of luck with whatever your decide.

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#4

I sometimes wonder on these groups if all the positivity is because the people on here survived the procedures reasonably well…in other words the people who were severely damaged or died during surgery are just not on these sites!!! if you have a risky procedure on all goes well of course you think it was worth the risk, if you end up badly damaged maybe not so much…

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#5

I have to say I have had the same thought Yogadatti! There aren't many people here who warn against intervention!

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#6

Hi Tricia!

My AVM was in left cerebellum and I had it removed. I am 42 yo and I survived the 1st bleed (that's how I found out about it). My options were to do nothing, radiotherapy for 2 years in which I might bleed, and surgery. My drs told me that the risk of bleeding increases after the first one and likelihood of death increases as I bleed more. I must admit I was scared as hell! I decided on surgery because the bleed was horrible, many deficits and a week long hospital stay. I am one year post op and I don't regret the surgery. I am still adapting to my new norm. If I had to do it all again, I would still do the surgery. BUT it was a hard decision.

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#7

Hi Unbelievable1. I didn't think surgery was an option for cerebellar AVMs. Do you have any deficits from the surgery please? Has your AVM been obliterated now? And do you know how big it was?

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#8

Hey Lulu!
My AVM was in left cerebellum and surgery was an option for mine. My doctors reminded me that I was recovering from bleed and surgery so I had to learn to walk twice. My deficits are not visible but I just feel different. I now have anxiety, especially when I'm tired or there is a lot of stimulation (noise, talking, etc). I can go to events but I use earplugs sometimes to minimize the noise level. I walk fine now, I just take my time. Tiredness is sometimes an issue and if I do a lot one day I usually rest the next. I am really blessed to not have many deficits. It has taken a moment to adjust as I was just determined that I would be the same. I'm not the same and that's ok. It was a Spetzler Martin Grade 1 AVM and it has been obliterated.

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#9

Hi Unbelievable1. I'm so glad it worked out well for you. I suffer very few deficits at the moment and I have to admit I'm worried that if I try to treat my AVM I will somehow 'anger' it and cause deficits. I probably sound mad, but thats how I feel. Also my AVM is large (not sure how large) and even Gamma Knife is out for me unless I shrink it through multiple embolisations first. Still, I count myself very lucky. Things could always be worse huh?

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#10

Hey Lulu!
It is perfectly OK to be angry. I gotta admit I have gone, and still go thru, a slew of emotions. Not sure if its all from surgery or some of it is the mid 40s issues. Have you had a second or third opinion? These things are so hard to talk about because they are so uncommon and sometimes difficult to explain. Things could be worse and that helps my perspective. It is always healthy to acknowledge where you are and to just do the best you can. The cool part is that you get to define that. :slight_smile: . A good support system is necessary as they can pick up on things that you can’t. Keep good people around and don’t be afraid to lean on them if you need to. That’s OK too!!

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#11

Hi Unbelievable1. Thanks for your message. I'm feeling a lot calmer today! Sometimes I do get angry and used to wonder why this was happening to me. But that was before I discovered this forum and others 'in the same boat'. Its one of the ways this site has really helped me. I know what you mean about age being a factor! Perhaps we get less tolerant as we get older. Unfortunately here its not easy to get another opinion. You tend to be assigned to your nearest specialist hospital and be under the care of the neurosurgeon there. You just have to hope they know what they are talking about. I do try to look at things from the bright side generally though. I'm alive, I have a family who love me, a job I cherish and suffer few deficits. Things could definitely be worse.

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