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AVM Survivors Network

Upcoming craniotomy

On August 17, 2019 I had a brain bleed. They discovered a parieto-occipital Borden 2 dural arteriovenous fistula. I had an embolism Oct 21st that where they caused a perforation from the guide wire and couldn’t complete the procedure fully. They scheduled me for a craniotomy on November 11th, however the onyx I guess had worked better than they anticipated and it appeared the avm was gone. I just went in two weeks ago for another angiogram to check it out and it appears the avm is growing and described as “robust”.
I was given the choice of trying to get to the area through the vein side since they can’t reach it on the artery side but the neurosurgeon didn’t seem very confidant that will fix the problem. The other option is try the vein way with a craniotomy the next day or to just go ahead and perform the craniotomy.
I opted to go ahead with just the caniotomy because I want it all done and over with. They seem confident where it is located they will be able to get it all and have a speedy recovery.
I am beginning doubt my decision. Is it a good idea to go forward with trying everything possible to not have the craniotomy? Every time I go for another angiogram it takes longer and longer to recover it seems. I don’t want to have to keep going back for angiograms and embolisms.
So far surgery is scheduled for the 26th but I am getting very anxious and nervous over it.

a tough decision that only you can make…I had an occipital/parietal avm and it ruptured. after the emergency craniotomy to stop the bleed I had the choice of embolization and gamma knife or another craniotomy to remove it. as I didn’t want to risk another bleed I opted for the craniotomy. wasnt sure of my choice at first but after a successful surgery I am AVM free. I have plenty of deficits from the bleed but I have piece of mind knowing it is gone. best wishes in making the best decision for you!

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Mine ruptured but thankfully it wasn’t terrible or nearly as bad as your sounds. I just lost partial eyesight for 2ish months. That is what I really am looking forward to, being AVM free. I think it is lucky that I have had a chance to heal from the bleed before the caniotomy. How was your recovery?

the recovery after the craniotomy to remove the AVM I was in ICU for 10 days but the recovery went well. some pain at incision site for about a month but I did not have any additional issues from the surgery.
I got the best words I could hear when I woke up with my neurosurgeon telling me everything went well and my AVM is now gone; such a relief getting that out of my brain!

That is truly amazing news. I have a good feeling about getting the caniotomy. More so than more emobolisms. I hope my recovery goes as well.

I’m a little freaked about the whole virus thing going on at the same time I’m supposed to have surgery. I am scheduled for the 26th and I’m just going to wait till a few days before when they are supposed to call me since things seem to be changing every day to talk to them about any additional risks or if we need to postpone. I hate to postpone.

Thank you so much for your input. It means so much to talk to people who have been through similar and know what I’m going though.

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I see you are from SC. Where are you having the surgery. I had mine at MUSC.
Had a bleed, and then they found the avm and I had a craniotomy. Recovery has been difficult, but I am avm free and completely independent.
Hope all goes well for you

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Yes I’ll be at MUSC. I’m located in charleston. My doctor is fairly new to MUSC, Dr. K (I don’t know how to spell it lol it is a hard last name so everyone just calls her Dr K).

Were there complications to make it a tough recovery?

My avm was in the cerebellum. The hope was to only do an embolization, but I had a hemorrhage and they moved me to the operating room and did the craniotomy. Hemorrhages in the cerebellum often result in hydrocephalus; and that is what happened to me. They put in a drain for a week. So, that did all impacted my recovery.
The recovery was just really slow and very emotional for me. It was a lot of very hard work, but as I said I am completely independent. Playing golf and walking eighteen holes. My issues are balance related, and dizziness.
The care I received at MUSC was top notch. The nurses were fantastic.
Happy to answer any other questions
Carol

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After my embolism I decided I wanted to get certified in yoga to help people with stokes who have balance problems and other issues. I read a lot about how much restorative yoga helps. 3 weeks into my certification however I learned my AVM was growing back and was “robust” so I had to quit. I still plan on after my recovery to follow that path.

It is all so very emotional. I am glad to read you are playing golf and walking the holes! I know perfectly able people who don’t have that stamina.

I agree on the nurses! I was in ICU for 2 days after my embolism, they perforated an area with the guide wire but it only bled a little. And the nurses were so amazing.

I think you should get second opinions. There may be a better solution than a craniotomy. That seems like a very last resort nowadays, especially for a dural fistula. How far can you travel?

I’ve had a bunch of doctors in on the case. The way it twists and turns makes it impossible to get there. They perforated me last time with the guide wire trying. There is a chance we can try the embolism using the vein way instead of the artery way but it is a real slim chance.

If North Carolina isn’t too far, there is someone there I would recommend.

This is a tough question as it is something only you can answer… when I had my bleed I was told that they wanted to operate to remove the AVM as I had no other choice… considering some are unable to operate due to location or other complexities of their AVM you need to take it as a positive you have this option… it’s normal to be anxious over the whole thing and I have not seen or heard of any one here saying they were fine going through the procedure… we are human but need to try and be positive and relax as best as possible… I tried to do things to take my mind off it and the hardest part I guess was on the day going in and feeling very anxious… once you are sedated the rest is in Gods hands and your anxiety will pass… please keep us posted and updated on your journey as we are here for you… God bless!

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Thank you and you are totally right. once you are sedated the anxiety will pass.

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How are you holding up? I was pretty stressed leading up to my surgery. I hope you are managing to hang in there
Carol

They just notified me that they have canceled it and will call again in two weeks. I feel even more stressed over the cancellation I think. I mean I’m happy to have a reprieve and be able to work a bit longer but now I’m so worried about a bleed.

Thank you so much for asking. It means a lot.

Oh no. I had a similar thing happen. I was all scheduled for surgery and then some insurance issues resulted in my surgery being cancelled. At first I was so relieved and then it sank in that I had to wait and go through the emotional wringer all over again. It’s very hard.
I’m sorry this is happening to you. I know how hard it is.
I wish I had some words of advice, but the whole thing was so overwhelming. It seems all I did was hang on.
Carol

I’m so sorry this has happended to you both and I can only say that the last place you would want to be at the moment is in a hospital around the high risk of this COVID-19 virus… I know its not ideal but as someone who has had the surgery and how fragile I was after it I can firmly say the last thing you want is this virus during recovery… everything happens for a reason… God bless!

I still STRONGLY suggest you seek a 2nd opinion before you have a potentially unnecessary craniotomy. You can take this extra time to do so. You don’t have to travel or meet with someone to do so either. You simply need to get your images to someone to review your case.

Thank you. It really helps to hear your experience. I truly appreciate it more than I can even say. I’m not sure at this point what is worse the anxiety over it or this whole situation we are in at the moment.