Quantcast

AVM Survivors Network

Vertebrovertebral Arteriovenous Fistula ( VV-AVF) with PT


#1

Hi,
I wanted to post this because VV-AVF is rare, so I want there to be something on here.

I was diagnosed in August 2017 with Vertebrovertebral Arteriovenous Fistula of C1, C2 after 2 yrs of brut, very loud pulse whoosing in my head. When asked which side I would say left because it started there and was louder there but I could hear it on both sides and inside my entire head really, because of how loud it was. Dr’s did not believe it was dual sided until I was finally diagnosed.

It took an incredible amount of time and 3 specialists to dx and get a plan for surgery. I was terrified by what may change, not change, all of the possible unknowns. Then I woke up in recovery and the noise in my head was gone, it was finally quiet.

I’ve had a number of positive changes go on since the surgery. It seems to have been impacting my taste, smell, headaches, migraines, body pain-everywhere, mental health/wellness. I doublt my neurosurgeon would believe the wide ranging impacts but I know what I have experienced and those around me witness the new me. Living with much less pain.

As I look back throughout my life I wonder if I was born with this or did some injury happen? I know I tumbled down basement stairs as an infant. I know from the things which have cleared up that I have been dealing with this since I was 10 or 11 at least. So I am left to wonder, what happened?


#2

Catherine,

There is some more modern theory that some types of AVM are acquired but longer standing theory is that they are congenital – formed in the womb. So probably, you’ve had it forever, though over time the damage that the wrong pressure in the wrong place causes eventually showed itself.

I see it as a bit like a stream running through a meadow: it never builds up the banks over time, the only effect the stream has is to very gradually erode the land around it, eventually leading to deep sides which we see. I expect if we overdo things, too, do things that put our blood pressure up, that accelerates the erosion.

Your story is so rarely read that I’ve moved it to our AVM 101 section, so it can be a reference for future generations.

I’m really pleased to know you’re doing well. Very best wishes

Richard


#3

Thank you RICHARD. I can hardly believe it is 7+ months post op. Feels as if years have passed.

I am feeling well. My only issue is frequent painful muscle spasm in a very precise area of my neck. Thinking I should discuss w my dr.

I wonder if I was born with a weakness in this erratic that has affected me much of my life. Then a cpl yrs back I recall feeling/hearing an extremely loud pop in my head, I felt a bit dizzy when it happened. Then I waited to see what would happen next but nothing did. The whooshing didn’t start for many months after that.

Today I had my follow up hearing test. With the brut I had hearing loss which was concerning for my age. Today my hearing was tested and back to exceptional. Near newborn baby exceptional. So not only did I have this extremely loud noise and effects, it significantly affected my hearing.
This impacted how I functioned each and every day. Especially as an introvert, needing quiet, space to refresh and not getting it for more than a year.


#4

It’s great to hear from you again, and that you’re doing so well!

Very best wishes always

Richard