Newbie and recently diagnosed with DAVF

Types of Avm's Brain DAVF
,
1

Hi to all out there!

I was recently diagnosed with a left carotid artery DAVF (arteriovenous fistula). My only symptom started a little over a year ago in Oct 2019, when I developed pulsatile tinnitus. Long story on how I got here, but the diagnosis was actually a relief. A relief in that I was finally able to find out why I started having tinnitus in my left ear, when I was an otherwise healthy individual. My next step recommend by my neurosurgeon here in town is to treat the fistula with the endovascular procedure. I have been told my fistula is “large” (I was not given a grade #) and it is possible that I have had this for years, but that it has more than likely growing over time. I am currently working on contacting several medical facilities to get the best treatment plan. I have spoken with Mount Sinai in NYC and I am waiting on a call back from the Mayo Clinic. Both are widely recognized and perform this treatment for my specific case around 10-15 times a month! That alone gives me such relief as I have heard that DAVFs are rare.

I do have one question for the community here. I was told that the biggest risk (aside from all of the normal risks) could be facial nerve palsy. Has anyone been told this is a potential risk? Did anyone have this as a outcome after endovascular surgery for their DAVF (not to be confused with AVMs)?

Regardless, I will still proceed with the surgery as I have been told I am at a high risk for a brain bleed without fixing it. Any feedback on how your surgery went would be so helpful.

1 Like
2

Hi,

I also have a dAVF on the left side of my head, about an inch back behind my ear - I can’t recall the exact term for the location at the moment.

I’ve also had a rupture last summer. And, developed pulsatile tinnitus prior to the rupture - along with other symptoms that I just overlooked

Both of the medical facilities you mentioned are the top facilities for people with our condition on the east coast - that I know. I’m on the west coast, in AZ - right next to Barrow Neurological Institute. Which is also in the same top tier category specially for dAVF’s. My neurosurgeon said they see a few dAVF’s a month & have had amazing results - as have I. . . It was a very rough experience, a brain bleed is definitely a good thing to prevent if at all possible - I just didn’t know what was going on until it was too late.

But, everything worked out - they completed an embolization that achieved full occlusion on the 1st try. This was just at 8 months ago - today, well - today I’m doing very well. Apparently they really knew what they were doing & luck was on my side. . . At this point of time, I would say I am back to about 95% if not a tad more.

And - according to my neurosurgical team & a lot of reading - most of the recovery I had to do was due to the rupture itself & not the embolization procedure.

I wish you luck, you seem to be on the right track - do your research & hope for the best

God Bless!

1 Like
3

Hi @mike_az_21. Thank you for taking the time to respond! I’m first so happy to hear you are feeling good and doing well. It is nice to live in the era that we do with all of the modern medical advances. Hearing your story makes me feel a little more confident about the procedure. It’s hard not to get into that never ending cycle of reading stories of those who experienced negative side effects or had problems.

I’ve become accustomed to my PT. I’ll never forget the day it all started. To hear something in your head that is louder than your voice and thoughts is such a terrifying feeling. Especially after you go from doctor to doctor and everyone basically tells you that your crazy and you’re fine. I wanted to yell at all of them and tell them that I know my own body and it’s not fine. Lol! Anyway here I am a little over a year since my life was turned upside down. I am very grateful though for still being “healthy” as far as the dAVF not bleeding.

Did you have coils and/or onyx to fix yours? I’ve been told mine is large and may require up to 50-70 coils!!! They said the only reason they might add onyx to mine in addition to the coils is because he doesn’t like using that many coils. I have to say the onyx scares me. I’ve read it can be risky if not used properly.

Another doctor I spoke to said he doesn’t like onyx because of some of the risks. He told me he would only use coils. My doctor in town (not Mount Sinai or Mayo) but a local hospital said that onyx can lead to facial paralysis. Hearing that made my heart stop. Have you heard this as a possible risk before?

Did your body or head feel weird after getting all of that blood back?

Sorry this was longer than intended! Continue to take care and get to that 100% goal!

4

Boy, well - when the big one hit, I had zero say so in what was going to be used on me or how. I lost all mobility & was close to being fully paralyzed for about three days prior to my embolization procedure.

My neurosurgeons were very thorough - no coils, no clips, no shunts - no devices used or left behind, aside from a ton of Onyx 17 & 34 was used < I have never heard of anyone else having this done to them on here at all. I asked my neuro on what he thought about coils & other devices. He said their first two primary solutions are embolization & GK - of course, everyone’s case is so so different. He stated that nothing else would have applied to me due to the size/position/location of my dAVF. GK is slow acting & physical removal on me would have caused serious deficits. They went in with an Embolization, it took them over a day to come up with the strategy to get this done. I asked about coils also, he said that they try to avoid them if at all possible and go with glue first.

The neurosurgeons were very proud of their work - when I came back to and the machete ripping through my skull feeling was instantly gone, I can just see the feeling of success in the whole team.

After all of this I did & still am doing a lot of research on AVM’s & their current solutions. “We” are very lucky to have made it to this of age - I also asked what was oldest case of complete occlusion still being 100% with Onyx as the permanent solution - he said 5 years. . . My chances of complete occlusion on the first try was 3-5% & would need a 2nd to do the “touch up”. The day I went in, I said I’d pay a million Dollars to walk out that day if I had it. I walked out an hour later with a full occlusion on the 1st try full release. It was intense - I got to see the fully occluded dAVF under fluoroscopy that day, since they kept me awake while they were doing the angiogram. If it was not to show full occlusion, I’d be going all the way under & waking up in ICU again.

I am a very unlikely case from what I have read so far. I’m back to powerlifting & everyone around me says it’s physically impossible after what they seen happen to me. But, I currently feel better than I have in years.

The neurosurgeons said I have no follow ups either - come back when/if you need to < their verbatim

I have been back into ER twice. First is when the neurological connections were still forming - that’s what my neuro said to me (I thought I was having a seizure & started to stutter). Second was due to having stroke like symptoms again - they verified everything & did an mri. They called it resurgence without an underlying cause - I asked what can possibly cause it again, they said anything. . . My right leg went numb & I had a throb behind my right eye for a week before I went into ER.

Only positive - being a stroke risk gets me in & out of ER within 45 mins(if nothing is wrong) lol

Let me add this - I asked my neurosurgeons multiple times if I am allowed to go back to lifting. I would hate to give it up, but I listen to what they say - in true seriousness they saved my life. . . They said load it up, after three months post embolization. I specifically asked, because I lift some intense weight at times. They said sure, but try to work into it & see how you feel. I was only allowed to lift up to 10 pounds for three months. I lifted 10 pound dumbbells about a thousand times per day per arm. At three months I started doing push ups - at 3 months I bought a decent weight set since all the gyms were closed due to COVId anyway. I lifted up to 60 pounds per arm, starting with about 30. . . Then I went back to the gym - first two times my blood flow really took off through my temporal veins. . . The whole flow in my head felt off for months. My neurosurgeon described it to me like this “you will experience things you never felt before & never thought were possible”, “we re-did the plumbing in your head, to put it in your terms” - That to me was very well put.

What I will have life long is PTSD from the moment the last hemorrhage happened and what I went through in the weeks after. It’s an experience nothing could explain. . .

The whole neurological wing agreed it was miracle on what happened to me & how, then me coming back this fast.

Sorry for the long reply. . . . But, that about covers everything pretty well

5

@Aivilo

Welcome! I’m a DAVF survivor, too. I also was told mine was “not big in terms of diameter but was big in terms of the amount of blood being diverted”.

I self-diagnosed mine from the pulsatile tinnitus. I might link you to my story so you can see the whole thing step by step.

Mine developed quite quickly, I think. I first could hear the PT in about Sep or Oct 2015. I asked my doc if he could see wax in my ears (because that accentuates the sounds in your head) but no. By Jan 16 it seemed louder but I didn’t find anything online that sounded worth going to the doc. By Easter 2016 it was definitely louder so I did more Googling and found a reference to pulsatile tinnitus. OMG. So off to the primary and was referred to ENT. My ENT doc used a stethoscope to plot over my head and could hear the “bruit” over my right transverse sinus. I’m pretty sure it was pumping into my TVS and playing both left and right, past both ears as a “bush, bush, bush” sound.

I saw the ENT in August, first MRI in Sep and then referred to neurosurgery. I saw a consultant interventional radiologist in Nov 2016.

I had an embolization with PHIL glue in April 2017 which was successful. No deficits. All perfect. Took about 18 months to get to feeling back to “normal”.

I feel my DAVF was degrading over time. I forget the timings of how I felt at what stage (they’ll be in my story) but by the autumn of 2016 I was feeling dizzy – like actively holding the handrail to go down stairs – and I would say over the autumn to the spring increasing dizziness and noise from the pulsatile tinnitus, to the extent that lying with head on a pillow made my head spin. By spring 2017 I was “sleeping” on a pile of pillows at about 30° incline!

I think PHIL cures quicker than Onyx so may be more appropriate for faster flow shunts. Worth discussing with the doc but if he or she is only familiar with Onyx, I think I’d stick to what they’re expert with!

I don’t believe DAVFs are measured by the Spetzler-Martin grade but by the Cognard scale. Look this up in the AVM 101 section.

Hope this helps.

Embolization seems to be the go-to treatment for DAVFs.

Very best wishes,

Richard

2 Likes
6

My story My Update - Dural AVF Embolization

7

At BNI they are clearly Onyx Embolization happy - but, this seems to be a good thing, with over 2,500 done at the time I gotten mine

Next up is Gamma Knife, considering their motto is “home of the Gamma Knife”

One of the most difficult things for me was to just leave everything in the their control. But, the precision these people displayed was nothing short of extraordinary.

They did say I had a lot of luck on my side, but what I add is that luck brought me to them. Considering the first ER had no clue what to do with me twice.

I’m amazed that I did this well post the hemorrhage stroke I suffered & according to them it wasn’t the only one I had within my life time. Like Dick mentioned as you have, PT is what got you to diagnose the underlining cause. I completely over looked the PT & never thought much of it - it just didn’t seem that intense or loud to me.

2 Likes
8

Hi Aivilo

I had my embolization done for a dural fistula similar to what you’re describing with PHIL

I think @DickD is correct that they use different substances depending on flows and locations as my hospital always uses onyx that I’m aware of but they used PHIL in my case. I think it’s as case by case basis but I’ve read nothing but great things about both PHIL and onyx

I had a lot of symptoms, some very bad ones however thru reading and recently meeting a guy who’s mother passed away from a davf she didn’t know she had, the severity of symptoms are not a direct indication of the severity of the davf

You can have very mild or almost no symptoms and it can be extremely life threatening and you can have terrible symptoms but when they go in to look, fortunately it’s not too serious or life threatening but unfortunately you have negative symptoms you have to put up with

Now not to scare you at all - knowledge is power :slightly_smiling_face:

As for your question, yes nerve palsy is a negative outcome that can happen along with a fair few other negatives that “can” happen. There are quite a few risks if we are all honest however if they are deciding on surgery, they are weighing the risks vs benefits and they think the risk of surgery is worth it as it’s far more of a risk to leave it be as it more than likely will end badly

I’ve been through the surgery and multiple check ups. They have been in my brain 3 times in a year and plan on more check ups but they did “fix” it in one surgery

Having said all that, the risks for any type of brain surgery stuff is higher than average run of the mill surgery but they are still quite small risks if you read the reports etc. They have to tell you the risks and while they are very real, they are a lot less real than leaving it there and doing nothing

Make sure you are very happy with your surgeons/radiologist etc and ask any question at all you have. If you’re not happy in any way, change practitioners if possible. You need to feel safe and informed. You may well get more info from here though than from the hospital lol (from many people’s experiences)

One more thing that I like to look as a positive is they didn’t have this technology allll thattttt long ago and so it was craniotomy if it was possible which carrys even more risk so while we are unlucky to have a fistula, we are lucky to live in an age where this surgery is possible and they have learnt a lot about it and it’s a lot safer than what they used to have to do

I haven’t been online lately as I’ve been through some personal stuff but I’m only an inbox away if you need anything at all

Feel free to reach out if you need support

I’m dribbling a bit here so apologies but basically what I was trying to say in a nutshell is, yes there are some risks definitely and being honest surgery scares me. However, if you read the follow up reports, it’s still what’s classed as a relatively safe procedure so best to try not to worry about what could go wrong as it much much more likely to go right with no negatives than wrong. They are genuine statistics, not a feel good statement :slight_smile:

If I were you (and it’s your choice only), I would be asking around a few specialists to see why they are wanting to use coils. I know there are some instances where coils are preferred due to different reasons and in your case it might be better but in general from what I’ve read, if you can get away with onyx/PHIL etc and no coils, that’s the way to go. Once again, I have limited knowledge on the reasons they sometimes use coils so ask the doctors why coils. I’m saying that as you don’t want to get coils only due to the fact the doctor is scared or inexperienced with onyx/PHIL. As it might be a better option… who knows so ask questions and see what they say. Hope that made sense

Also to put your mind at ease a little, they also got mine 100% obliterated first go like @mike_az_21

I’m just a research Guinea pig for others which is why they are going into my brain so often lol

I wish you the best

2 Likes
9

After writing all of this & doing so much reading, what I figure it’s a great time to be alive - specially having one of these

All of us get treated as separate cases with variations of treatments, there is no one fix for all - but, the neuros really hit this AVM breakthrough within the last 3-10 years - from embolization to micro surgery

I always wish us all the best. All of this stuff is/can be so life altering

1 Like
10

@mike_az_21 - I have been meaning to respond to your post since you took the time to write back. It has been a really overwhelming past few weeks. Needless to say my anxiety and medical PTSD is at a high. I never knew medical ptsd was real, I thought I just made that up in my head. But it is real and I wish I could go back to not having it. Stories like yours make all of us keep the hope alive that our procedure could go as well as yours did.

Since I last posted I have had multiple conversations with different medical facilities in the US. The “good news” is that all of the neurosurgeons I spoke with all agreed that coiling was the best approach. The neurosurgeon that I choose is going to use a combination of ingredients (coil + onyx). However, he said that is his thought right now, but all could change once they get inside. He has multiple ingredients to use, beyond coils and onyx (plugs, phil - which he said he does not think is a good choice for me, and others).

I feel really confident in my decision on which facility/neurosurgeon to go with. I have done as much research as I can and doing so has somewhat helped my anxiety decrease. The doctors feel confident that my PT will be gone, just based on the location of the fistula and the size. Honestly though given I have lived with this PT for over a year now, it has become the norm and no longer bothers me. Although it will be nice to have quiet at night.

My surgery is scheduled for April 6th. From what they say, if all goes right, it should only take an hour for the procedure itself. They also feel confident they will only need 1 time to correct it. I will then stay over night to be monitored and hopefully released the same day. It all sounds good and promising, and so I am trying to remain positive.

For anyone out there reading this post, just a quick word of thought. And I am only saying the following because I have had a rough go with hospitals ignoring symptoms and/or making critical mistakes. Please know that YOU have the choice of what facility and neurosurgeon you choose. YOU do not have to go to your local hospital or somewhere with limited experience that you do not feel is right. Do your research online, setup video calls with surgeons (be thankful for technology) and make the choice that your heart feels is right. I also strongly believe in 2 or 3 opinions on anything in regards to your health. While doctors are brilliant in their field, everyone makes mistakes, we are all human after all. I also realize that sometimes money is an issue and it is hard to travel for the best care, but know that there are plenty of companies out there that offer compensation in addition to your health insurance. I picked up extra coverage this year called “Hospital Indemnity”. My particular package will cover $200 per day in the hospital, plus some extra expenses related to the hospital admission.

Thank you again @mike_az_21 for your story and giving me that light of hope. :slight_smile:

2 Likes
11

That’s good to read!

I hope you have a good time next week! I agree completely with not rushing into this stuff and being confident in the team that you’re using.

Let us know how you get on: I’ll be thinking about you all week.

Very best wishes,

Richard

12

“My Story” being the light of hope for anyone seemed to be an impossible miracle less than nine months ago.

Now, being on here this whole time I have learned so much - so much that I overlooked & how nothing made sense < well, it sure does now

The two neurosurgical centers you mentioned are two of the top facilities for folk here in the US with our condition. I just got “lucky” to wind up at the third - Barrow Neurological. . . . I can’t say which facility or staff is better than the other. But, from everything that I have studied about them is that these three are the top centers for AVM’s specifically.

My neurosurgeon at BMI said that they see about 10 AVM’s per week & about 1-2 dAVF’s

I always try my best to advice other folk, if you can - get into the best hands possible. Most hospitals aren’t even equipped to do an angiogram. Neurosurgery is the most serious business when we actually think about it. These men & women are on the edge of the neurosurgical frontier. . . . . If my dAVF didn’t hold out until these years, the outcome would have been greatly different. I spoke to my neurosurgeon quite a while about this & mentioned it on here a few times - At, BMI they pump out embolizations as much as possible. Of course, every case is different - but, embolization is the go to procedure. Which is a very good thing, since they are getting better at perfecting it. Half a decade ago a first shot full occlusion was close to unheard of. Personally & from what my neurosurgeon told me, most likely mine was going to take two. I remember the follow up angiogram & seeing the fully occluded AVM on their 50" monitor, when my neuro reached it with the catheter through my wrist - I fell into that 5% that he gave me of first shot occlusion in my case.

I have severe PTSD now, I never gave it an exact term or bothered looking into it. But, I am trying my best every day to let it shape my life in a positive way. Some days are harder than others, but being on here & going through what I have in the recent years. I completely feel that I have been blessed & nothing short of a miracle saved my life.

13

Thank you @DickD !! It makes me smile to know people who I have never meet will be thinking of me. This world is really good when everyone comes together and cares for one another. I do feel blessed or looked out for in regards to my DAVF as I know it could have very much gone the other way.

In regards to the coils, it sounds like the reason for using Onyx with it is so that he does not use too many coils. I guess each time a coil is placed, they have to take an xray picture…thus a small amount of radiation each time. And he wants to try and avoid too much radiation. The nurse did say that sometimes patients will have a small patch of dry skin near the fistula and/or a small amount of hair loss near the skin where the radiation occurred. Although they do not feel that will be my case.

As for the palsy, the doctor said it is a small % and he has only seen a handful, but it is just something that I need to be aware of. In his cases, all of those with the palsy have fully recovered. The recovery time is dependent upon the severity of the palsy. So I can assume if the palsy is a higher grade then it would take longer to recover.

Thank you again for the thoughts and best wishes! So glad to have found this site and talk to people like you.

Take care!

1 Like
14

It’s a complete pleasure to meet you and to be able to share some things along the way that might mean you worry less about it.

The radiation can take whole chunks of hair out but it will only happen if you have quite a dose. My evening in surgery seemed quite long (I had an angiogram to discover the exact layout of everything and the embolization in “one sitting” but I don’t know how long it was in terms of hours overall) yet I had no hair loss at all. Others who I know have definitely had long sessions in the radiology suite have had decent amounts of hair fall out but it has all grown back for them.

It’s just part of the dice that we get played!

The main thing I feel we can do here is to “be here” for each other as we all go through an operation that is undoubtedly frightening. By simple human sharing of experience I hope we can offer decent support to each other. We’ve all been through the sort of thing you’re going to do and I can say for me that it wasn’t half as bad as I thought.

With you at each step…

Richard

1 Like
15

Hi Avilio,
I also had a DAVF and underwent a craniotomy. It was an emergency so I didn’t know all the risks. Came out fine from the surgery which was Jan. 19th of this year. I did not have any type of palsy. Thankfully all I am left with is so,e balance issues which PT is working on and some memory issues which ST is addressing. I do have tinitus which I hope will get less as time passes.

2 Likes
16

Hi Puff,

Thanks for sharing your story. It sounds like other people on here have also had some sort of balancing / eye coordination effects. I almost guarantee that your PT visits will resolve this. As for the tinnitus did it start after your surgery or was it there prior? I can say confidently that my tinnitus started right when the fistula developed. Based on the location of mine the surgeon feels confident mine will go away after surgery. But again, I’m so used to it that if that is the only side effect I’ll take it.

Take care.

17

It’s best if they can get away without coils - but, they use & do what they have on a case per case basis

I can’t exactly put together how my procedure was done using both weights of Onyx 18 & 34

The coils are used to fill the larger void, then Onyx is used to fill in the rest. . . At least this is what I put together from everything I gathered.

18

What day are you in?

Have you got any questions, worries that we can help you with?

19

Tuesday is the day. Eecks! Can you remind me @DickD where your DAVF was located? Mine feeds into the carotid artery. They also say mine is quite large, but as you said it’s large in terms of the amount of blood. Thus why they are using lots and lots of coils and Onyx.

I don’t have any questions right now. This site has helped me tremendously. I’ve also had multiple video chats with surgeons everywhere around the states. You could almost call me the Wiki of DAVfs. :wink:

20

That’s good.

I don’t actually know which artery was implicated in my DAVF but it was discharging into my right transverse sinus so fast it was pumping left, right, up, down so I felt weird pressures on the top of my head and could hear a “swoosh swoosh” like the washing machine on pump out all through the day and night, in both ears.

The embolization was a lot less difficult than I imagined, which was good because my imagination can be dreadful!

Have a good week!

1 Like