Hi everyone. I was diagnosed with a DAVF around October/November last year. Since then my whole life has changed. Ive been finding it extrememly difficult to cope and i don’t know anyone who can relate to me.
I had an embolization to close off the fistula April this year. 3 weeks later the troublesome symptom of pulsatile tinnitus has returned
I’m terrified to what this could indicate. Do i have another fistula? Has the glue come loose?
Another thing that causes me great concern is what could have caused this all to happen in the first place. I’m a normal 23 year old girl with no family history of AVMS.
I’m mainly here to see if anyone shares my experience or can shed some light on what is happening to me.
Nina, Most of us know exactly how you are feeling either with a DAVF or an AVM. Perhaps if you go to the upper right side under Search: type in DAVF..you will get more information from those who had/have a DAVF.
As for the pulsatile tinnitus, I have that as well....It may be another search which could help you more.
The other thing is that perhaps you should schedule an appointment with your neurosurgeon and discuss how you are feeling.
Last of all, we are here to support you as we've been through what you are feeling. Keep staying strong & positive!
Nina, your situation is very similar to mine. I was diagnosed in late Dec 2015 and had 4 separate embolizations between Dec and Feb to fix 9 AVFs total on the sides of my neck. I too had pulsilate tinnitus prior to the diagnosis mostly in my right ear where the biggest fistula was. The tinnitus didn’t fully go away until after the 2nd procedure. I still fear it coming back and sometimes think I’m hearing it. So I can relate to the concern you have now that yours is back. My doctor said to for sure call him if the tinnitus comes back.
I had coils, not glue, and in the early stages of recovery I worried the coils might be coming loose. It’s just so hard to know what’s going on in there.
I too couldn’t figure out why this was happening to me. I have been very healthy and was 49 years old with no signs of any problem until the ear wooshing started out of the blue. One doctor visit, I asked the doctor why this was happening, and I broke down crying. They don’t really have an answer. He pointed out how others aren’t as lucky and are in icu fighting for their life due to a rupture. That didn’t really answer my question and didn’t help me feel any better, but as time passed, I realized how lucky I was and how the tinnitus wasn’t a curse, but a blessing. Not everyone gets those warning signs. That helped me feel a little better. I understand this is very rare and they don’t really always know why it happens. And they are so different from person to person. We are also lucky that the medical technology is so advanced. 10 yrs ago we wouldn’t have these less invasive procedures available.
But yes, it still sucks that we have to be dealing with this at all, and scary, I know.
I hope you don’t feel as alone knowing others are going through the same thing you are. Keep posting!
Martina
My experience was different because it was a spinal DAVF. In my case they embolized the fistula and obliterated it.
The doctors explained that the blood would reroute and could possibly find another malformed area that wasn't visible to them. Two months later, the symptoms came back. I had more procedures to deal with that one and haven't had another.
Good luck and let us know what the doctor says.
Jim
The good news is I recognized the symptoms and told them what was going on.
Thanks for your replies everyone. They mean so much to me. I’m very scared at the moment because i’m having an aching, sometimes stabbing pain the dural fistula area. Really, really scary, i keep waiting to just collapse and die
No news on an appointment as of yet. I’m trying to stay calm, but this pain isn’t helping.
It is not unusual for DAVF's to require more than one treatment session. As others have pointed out, embolization of the dominant feeding vessels sometimes allows smaller vessels (not evident on initial evaluation) to grow and re-fill the fistula.
For what it's worth, DAVF's tend to rupture less frequently than Brain AVM's and with fewer serious consequences. I don't think I've even seen a catastrophic bleed from a purely dural fistula in the head.
Thank you for your reply. That is very reassuring to hear (: My surgeon told me before i left the hospital that if it came back, it would be the first time he’s seen it…
It seems as though i am lucky to have found this more knowledgeable and friendly community.
I received a letter saying an angiogram is in the process of being arranged for me, so hopefully everything can be fixed again.
Hi Nina, I too have a dAVF (now embolized with Onyx) as well as scalp and face AVF's too. I was 27 when discovered now 28. I know for a fact that all 3 of mine were caused from trauma (arthroscopic jaw surgery). No AVM family history and CT and MRI before the jaw surgery showed normal blood vessels. (I do wonder if my blood vessels may be weaker than others, due to possible MS - I am in limboland on getting an answer to see if my other 99 problems are MS). Pulsatile tinnitus was what caused me to seek out a doctor. While the pulsatile tinnitus has been gone since the embolization, I have heard some other random noises in the area that sound similar but are much more faint. My neuroradiologist was not concerned due to the low re-canalization rates of veins and arteries with Onyx. I would keep a diary of when it is most noticeable or louder than usual and relay this to your surgeon. Best of luck
I had a lot of aching and stabbing pain over my dAVF (not as noticeable around face or scalp AVFs) the first 6 months after onyx embolization. Sometimes it felt like I had gotten hit in the head with a hammer, or like I had fallen and hit that part of my head on concrete... sometimes it felt like my hair is being pulled in that area, and other times I felt a vibrating/buzzing (like I was standing next to a helicopter motor running, feeling the buzzing but not hearing it). I am now 8 months post embolization and the pain/strange sensations are not as noticeable. I take a ibuprofen about once a week now, more or less, if its bad but I have noticed 1) caffeine makes the dAVF area hurt more and 2) so does heavy cardio or exercise. Take it easy and know youre not alone. Let us know what your doc says
