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AVM Survivors Network

Introduction

#1

Hello everyone.

I have an avf at the center of my brain near the brain stem. I have had two failed embolization attempts and the third was only somewhat successful. Out of the three vessels feeding the fistula they could only close off two. The third is a main vessel and could not be blocked. I just had proton beam procedure. They say it will take up to three years for the the results. My question to you all is… how do i handle the fear of a bleed. I still have the pulsating tinnitus. I still have head pressure especially behind my eyes along with pain in my eye. Cat scans look great, so they say. Whenever I cry I have nasal congestion which only makes pressure worse. I just don’t feel better from any of these procedures and I am scared. Any advice?

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#2

Hi!

It’s great to meet you!

Remarkably, @atul is going through almost exactly the same things. You two need an introduction to each other, so I’m pleased to do so.

There are lots of people here who’ve had radiotherapy of one kind or another. I hope they can help you on “how to get through” the next 3 years. The only thing I can say is that you’ve done what you can. All I think you can think is that every day that goes by is one step closer to being fixed. It’s very slow but it is progress.

There are plenty of people who have made it.

Very best wishes,

Richard

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#3

Thank you so much!! Having people who understand is really helpful.

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#4

When did you have your treatments? One of the things I’m trying to encourage Atul in is that he is about 4 weeks post embolisation and I’d say from my experience that that is very soon to expect everything to settle down.

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#5

Welcome! I thought I’d add a little here. I had Gamma knife in November 2016 after a bleed in May of 2016. Seems like yesterday…now. The time was quite challenging for me and I did worry about a bleed, a lot. I found that as time went on my worry became less and less as I tried to do as much as I could. I know I became hyper sensitive to anything dealing with the head. Even this dissipated, but it did always reminded me that patience is key in dealing with these things. The brain is amazing but mine takes its sweet time in everything. Take Care, John.

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#6

thanks for the update John, I will try and be more patient ! Have no other option at the moment I guess…praying that I recover completely.
regards

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#7

Thanks @DickD ! will keep the progress (hopefully) updated.

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#8

Hi, well Ive had 2 procedures as the first one was done incompletely as the surgeon cold not reach the area. The second one was done just 3 weeks ago and even now the surgeon has asked me to come back for another angio to confirm if it has been closed as sometimes the onyx can “slip” into a cavity in the skull according to him. So I have to really wait another fe months. The tinnitus sound is much less but its still there slightly. Does this mean that its still incompletely closed ? Hope so.
I would try and talk to a few other doctors just to get different views. Im sure there is one out there who would have an appropriate answer. I for one will keep looking.
regards

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#9

It is this that I think you guys have in common:

Best wishes,

Richard

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#10

Wow yes thank you for connecting me to him.

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#11

Dick D had responded to my first post stating we have a very similar situation. I was wondering if you have had any improvement?

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#12

Great advice. Everyone is so kind and helpful. It’s so nice to be able to talk to people who have been through this.

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#13

Hi! I had a bleeding on March 2016, failed embolizations two times and gammaknife in November 2016. I only received the news that the avm was obliterated a month ago :slight_smile: For me it was very hard the first year… After the first year I was more relaxed… The períod between the bleeding and gammaknife was the hardest of my life… I used to think that each day was a day in my favour because radiation somehow was working. You will get more and more relaxed as the time goes by… And again more worried when the “veridict” is close to arrive. For now just think that you have done everything you could :slight_smile:

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#14

I fully agree, thank you all !!

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#15

It is great to hear that the fear goes away. It gives me hope.

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#16

Well, I had my first procedure in June last year and the doc stated that he could not close the leak completely and had to leave a little. For 7 months after that I had headaches and dizziness, which started to weene off as the months passed. However I could never left anything not even a shipping nag because as soon as I did that I would have pain behind my eyes and up to the temples and to the top part of my head. This would then take 3-4 hours to subside after a paracetamol tablet.
My second embolization procedure was done 25 days ago and I have dizziness everyday. I just cannot lift anything at all as the same pain comes back in the same places. Not even a plate full of food !!

So the common thing we have is the pain behind our eyes. Do you have this all the time or only while exerting or applying pressure ? Can you life stuff easily and not feel pain or dizziness ?

The one thing that DickD mentioned which I have been thinking of is that the surgeons might have glued up some part of the blood supply that relies on something in the process unknowingly…wonder f this will ever be corrected even over time?

regards

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#17

That’s nice to hear that you are better. Do you think you have fully recovered Rita ? Is life back to normal ? Are there any things you do not do to avoid this.

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#18

Not at all… I live with pain and numbness in my whole right part of my body… Today i m a bit more down because yesterday I had phisiotherapy and the next day is :face_vomiting: but I m getting better thats on what I focus :muscle:

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#19

But I would say Rita’s situation is more common with people who have had a bleed. I’ve had one embolisation and while I’ve had a decent amount of dizziness, a feeling of different pressures in my head and tinnitus, most of that has faded such that I now ignore what’s left.

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#20

I will echo what DickD said. I had something different - major brain Embolization (30 coils and a bunch of super glue) in January of 2018. Based on the roller coaster that my eyes and their focus ability (more accurately, lack of), we are 15 months out and it’s still unsettled. Actually, let’s call it what it is, “I’m unsettled.”

hat tip to @DickD

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