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AVM Survivors Network

Post Operation Questions for Dural AV Fistula


#1

Hi All –

Question! In Oct '16 my mother (58) had been complaining of a “ringing noise” in her left year and MAJOR headaches. She went to many doctors and in March '17 they finally her got a CT scan and angiogram and they diagnosed her with the fistula. In April '17 she had the Embolization surgery to fix the fistula with coils. She was in the hospital for 3 days post surgery. Immediately post surgery, the ringing noise was gone and the headaches went away. WOOHOO

Doctors next steps were to have her come back in July '17 and do another angiogram to make sure the procedure they did worked successfully and that the blood is flowing properly.

Now being June '17 – maybe I am just freaking out (I tend to overthink things) my mom called me today 6/13/17 and said while she was napping while lying down on her left side, she heard a little bit of ringing in her left ear again. She said she had to “pay attention” to actually hear it. Where as before the surgery it was constant and was super loud. Is this something to be concerned about? Since the surgery she’s only heard a ringing noise once. I just assumed that if all the previous symptoms were gone, it was a good thing. Worries me now that 2 months later it randomly came back… I’m going to check in with her to see if it continues to happen…

I guess we will know forsure more next month when she gets her angiogram, but any insights or personal experiences would be helpful!

Thanks!


#2

Hi Kylie…I too had a dural fistula and had catheter embolization surgery in January 2016 placing 12 coils to block the fistula. The surgery was very successful. I started exploring what was causing the LOUD pulsatile tinnitus in 2010. The noise was like listening to the ultrasound of a fetus in the womb. It went on 24/7 with no relief. The AVM was only discovered after it bled in October 2016, thus the surgery. The pulsatile tinnitus is now gone but I still have ringing in my ears but am told this is a different kind of tinnitus and unrelated to the AVM. Not nearly so loud. Subsequent MRIs have shown the fistula is completely gone. I tend to freak out at any weird head noise now just from having suffered so long with the loud noises. Gun shy, I guess, but so far so good. An angio will tell you for sure.


#3

Jenny,

Thank you for your response. I think my mom is the same way and freaks out whenever she hears any weird head noises. Maybe just a little bit paranoid. Last nights sleep went well and she didn’t hear anything in her left ear (while even lying on her left side) which is good. You’re right the angio will tell us forsure. That’s coming up next month, fingers crossed all goes well.

Thank you for the help! I really appreciate it. :slight_smile:


#4

I agree. Straight ringing in the ears is regular tinnitus and not indicative of an AVM. Might be indicative of different pressures in the ear post op, but not indicative of “danger” so far as I know.

The other thing I’d say is, if you listen for something, it gets louder. Ignore it and it’ll more than likely fade away.

I had my embolization for a DAVF on 3 April and unfortunately, whilst my subsequent angio shows “all clear” I think I may have another thing going on, perhaps influenced by the different pressures in my brain, but I believe my stroke risk has been sorted.

Richard


#5

Hello So like your mom I have a DAVF and had the ringing my first embolism did not get everything but it did stop the ringing then I went back a few years later cause I was hearing it again not all the time and not as strong but some how my DAVF closed itself. So I dont think its unusual and its good she is listening to her body.
Once in a while I hear it but it goes away and I just note what I have eaten or drank that day- I have noticed if I have coffee later in the day I hear it - Before my DAVF I could drink coffee all day long and no effect but now if I drink some after lunch I have to get decafe- Ask your mom is she was drinking coffee or soda with caffefine that day. Now I have also heard that the glue or what every they used to dam up the DAVF can move so its worth noting to her doctor.
Please let us know how your mom is doing after her next procedure-


#6

Hi All,

Wow I can’t believe it’s already been 3 months since my moms embolization back in April for her Dural AV Fistula. I’m taking her to get her Angiogram this Wednesday 7/19 to see if the surgery was a success. I’m praying it was.

Overall, she’s been doing great the past 3 months. No headaches, no ringing in the ears (besides that one occurrence) and living her normal life-style.

Fingers crossed the results on Wednesday are good and we’re heading in the right direction. Needless to say I’m terrified…

Please keep my mom in your thoughts and prayers on Wednesday. I can’t thank you all enough for all the support :slight_smile:

Will keep everyone posted. XO


#7

Good luck!


#8

Kylie,

Will be thinking of both of you! It sounds like she’s doing nicely, so hope that is how it works out!

Best wishes

Richard


#9

Thank you everyone for all the support!

My mom just got out of her Angiogram (currently resting in her Hospital bed) and I just spoke with the doctor. We have some great news today!

99% of the Dural AV Fistula is gone from her Embolization surgery back in April. There’s a tiny bit still there on the end (~1%). The doctor said that’s nothing to worry about and it doesn’t require surgery unless it grows in the future. He also mentioned that overtime it could naturally fix itself.

She still has a small Aneurysm (3mm) that they also knew about back in April. The doctor says there’s no need to operate unless it grows.

With that being said, moving forward she will just need to get an MRI done in 6 months to see the progress. If everything stays the same (good condition) – she will just have to get MRIs once per year.

Overall, the doctor was super happy about everything today. I am very blessed.


#10

Kylie,

That’s great! Equally good to keep an eye on the remnants and the aneurysm.

Wish her all the best, please!

Richard