Went for a second opinion yesterday and embolization was recommended. Has anyone had their DAVF embolized and have there been any side effects?? No sure what to do. My only symptom is the pulsatile tinnitus, but it is constant and increasing in volume. Doctor feels that embolization now would help lessen the complexity of the DAVF. He is concerned about the pressure on the veins. It is not something that I have to do, at least not right now, but highly recommended.
Thanks for your help and advice!!
Yes I did have an embolism back in 2012 and need to get another one cause they could not get it all
My health was not good at the time as I had a massive rare stroke at 43 then a few months was found to a DAVF by my left ear
It was complex and retrograde meaning it was making the blood go backwards causing me to pass out
it had 30 artery attachments and 1 vein
They did the angio and embolism in the same day which I believe for me was way too myuch for my stressed brain to have and I had another stroke which I could not talk or use my left side for about 12 hrs
I had intense occipital pain ever since.
I am still glad I did it and now in fact today I go back to start the process up so I can get the rest handled. This time both my stroke dr and my pain neuro will be part of the post op team to make sure I am ok and I am going to limit the time 4 hrs they can be in my head and then do the rest the next day
Most people just get head aches. You want a doctor who has performed these because they are super rare just not a normal neuro is really qualified. I see Dr Michael Marks at Stanford who is awesome he is the founder or neuro radiology and people travel all over the country to see him
You want some one who treats DAVFs to do this procedure
They use medical glue which some people can be allergic to and it can travel, they used it on me and i heard popping afterwards so not sure if it traveled...also onyx which they used on me and coils..which they did not use on me.
Dont let it grow get it taken care of - it is scary and you want the best...
where are you located?
Mine is located by my left ear, so I hear it all the time. It is not very complex at the moment, but the Dr. suggested treatment in order to be proactive. Because in his opinion it will at some point grow. He did also say that I would probably have to have a second treatment down the road because he doubt they will be able to repair it all in one treatment. So far it is not retrograde, but after looking at my Angiogram, he feels it may be a little more complex. He is concerned about the increased pressure on the venous system in that area. I believe the material they would use is Onyx. I just worry about having more pain afterwards. Right now the only real problem I have is the pulsitile tinnitus, which I can tune out most of the time. Althought recently it seems to be increasing in volume. Thanks for your input.
When my started after my stroke it was not a huge bothering but it got worse and the doctors thought it was growing and I dont think they really can tell how complex it is until they go in for the angio-
I just saw my neuro today and he is ordering an MRA and we will go from there- He said there is always risk of a bleed which is suppose to be very painful.
Personally I just want it gone so I dont have to worry about it and every time I fly I get a terrible head ache which who knows if its related or not. This time when I asked him if they do decide to go in for the procedure if they will be able to go for the smaller veins and arteries that they did not get last time and he said they would only know for sure after the angio-
I think because I had a rough go of it last time and they now know I have something called Ehlers Danlos which means my arteries and veins can tear easily I think they may opt out of doing anything for me since I am not staying awake with the bruit currently....but I worrying about flying to Europe and back and having something happen
I can vouch pressure on our venous system is not good at all. Many people are fine after the embolism and some have a headache for a few weeks.
Mine is just rare case where I have pain every day- Is it better than it was when it first happened 3 years ago.
I can understand the fear but if you are hearing it all the time and there is pressure on your venous system I would personally opt to get it handled...
I recall when I got home and could not hear it anymore it was bizarre
I have had my DAVF embolised in April 2012 with Onyx. I have had no side affects, only positive outcomes.
My swishing sensation sound is gone as well as the severe headaches.
I was advised by my Radiologist that there was a 4% probability of having a stroke as a result of the
embolization procedure, thankfully that did not happen (He should have told me that there was a 96% of a successful procedure and not the 4% downside.)
It was also important while my DAVF was active to keep my blood pressure on the low to normal levels, you should get your BP checked by your Doc.
Hope the information was helpful,
Bye for now,
Like you, my only symptom was the pulsating tinnitus. It started in Jan 2013. I went for an embolization in April. My nuero radiologist was the same as Angela’s. I decided to pull the trigger on the procedure because we were moving out of state in May that year.
They had to go in twice, back to back weeks, because of the size of my fistula. Did not feel anything after the first one. But stayed in the hospital for 2 nights on the second week as I wasn’t feeling that good but couldn’t exactly pin point why. I only realized after I got the report that they paralyzed me the second time because they thought I moved.
I was back to work the following week. And we moved out of state the week after.
My blood pressure was higher than normal after that. But has stabilized now.
The first procedure took out 50 % of the fistula. The second about 98%. Dr. Marks said that it was good I had that done before there were any backflows to the brain. For the remaining fistula, he had said there were two possibilities: it would stay the same or it could recruit more arteries. One of his fellows suggested a third option, i.e. it may just close itself off. Didn’t make the 3 month angiogram follow up. But finally went in July 2014 in Houston. Nothing should in my MRI and MRA. The angiogram backed it up. My fistula closed off.
Everyone seems to have different experiences. With everyone sharing their experiences, I hope you make the right choice for you.
And btw, that bruit noise from the tinnitus, got too severe for me too. I couldn’t quite sleep. It became too bothersome.
Hello Leigh! I am glad you got it taken care and dont hear the bruit! And that you did it with Dr Marks. Dr. McTager I am not sure how you spell his name is no longer there as I would of requested him not part of my team.
I go for MRA soon and see what they want to do- I think Dr Marks will want to go but Dr Schwarz is in charge of me and I think he is worried I will have a stroke or tear an artery but I want it done before Dr Marks retires
Dr. Colby at Johns Hopkins (where I got my second opinion) is suggesting the same thing. Have treatment before the fistuala gets too complex and backflows. Thank you for Leigh for sharing your story.
Molly I know this is very scary and a lot to take in. I think as long as your doctor has done many of these and what his success rate is I would do it with him or another doctor who specializes in DAVFs - Make sure that you can sign with your hands just in case you do have a stroke or a minor one and cant talk
are all things my husband now knows what I mean if I cant talk
also you should be able to write even when you have a stroke
also I would not fly anywhere with your DAVF
Hi Angela, Dr McTaggert wasn't very involved in my case. It was Dr. Chaudry that was assisting in mine. Oh, is Dr. marks retiring soon?
Good luck, Angela. I recall there were a lot of complications in your case. Hope you have that resolved soon.
Thank you Leigh
I am so glad Dr McTaggert was not part of your team- I am not sure if he is going to retire soon I just thought with his age and I know another person in Radiology who started when he did and she is getting to retire in 2 years so I figured better get it done by the expert- I think my stroke Dr and Dr Marks might have different views - I just want it gone and dont want to wait until its worse to get it done. The stroke dr and my pain neuro have agreed to be part of my team so I know they know me and will help me- I am even going to ask they have my husband in the room but I doubt they will allow it- so glad you got it done before you left!
Thank you I will let you know what they want to do
Dr McTaggert is no longer at Stanford and I go in Wed for an MRA and we go from there.
I dont think my stroke dr wants me to have another procedure since I am not hearing the bruit every night but I want Dr Marks to do it I fear he will retire soon
Any more update?
If your doctors are recommending treatment now then I would have it done before it gets worse.
I had my DAVF embolized last February. At the time I really had no choice as it had progressed fairly quickly from when I had the initial MRI and I already had cortical veneous reflux and my left jugular vein was occluded.
I was told that if I didn't do have it treated then I had a 20% chance of having a stroke and that this would go up over time.
I had my first angiogram on a Tuesday and they called me back into the hospital two days later to see the specialist. He said that he recommended I have it treated as soon as possible and that they had a cancellation on Monday and he wanted me to have it done then.
I didn't have long to think about it but as I was very sick by this stage and the odds of having a stroke were higher if I didn't have it treated than if I did there really wasn't any other choice.
The fistula was successfully closed but they could not save my left jugular vein and so I still have the bruit in my right ear due to the increased blood flow out my right jugular. I also have raised intracranial pressure that they think is due to the changes in the blood flow in my brain. This in turn has left me with a lot of headaches and fatigue. I am on medication to reduce the pressure in my head and painkillers to reduce the amount of pain.
Some of these problems my have been avoided if i had been diagnosed quicker and treated sooner.
Actually spoke with Dr. Colby the other night. He answered all my questions. I will be scheduling a procedure next month. Thanks for all the advice and support.
Just thought I would give an update. My embolism is scheduled for 3/25. I am confident that I am making the right choice for treatment. Thanks for all the support and advice.
How did it go? What did they embolize with, Onyx? I had Onyx 2 weeks ago and my pulsatile tinnitus is gone. Hope you are feeling better.
I had my embolization in March. I didn’t have any symptoms nor did I know what the symptoms were after being told about the whooshing noise, I do remember experiencing that a couple of years ago and didn’t know what it was. I was going to my neurologist for a problem with my legs shaking. I had several MRIs. He noticed a spot in my brain on the left side just above the cerebellum. It hadn’t changed in the year and a half of monitoring, but he referred me to Emory for a second opinion. That’s when I found out I had the highest risk dural fistula
So I had the embolization with Onyx and the interventional radiologist said he was able to get it all. However, during my 7 week angiogram followup, he discovered it had come back about 20%. So I went back to the first surgeon at Emory and he did a craniotomy in July to remove it. The radiologist was surprised but the risk factor of a major stroke in 3-5 years was back.
I did not want to take any chances of having a stroke, so for me, there was no question in my mind but to have both procedures done. Now I am DVF free and I don’t have that worry any longer. Of course, I still have some worries.
After the embolization, I spent one night in ICU and another night in the hospital. My worst afte effect was a bad headache and sensitivity on my head where the procedure was done. I had to sleep at no less than a 45 degree angle for two weeks to prevent any back flow which may have resulted. I took pain pills for the headaches for about 2 weeks or so. After that,I didn’t experience any more headaches.
I feel very blessed that the AVF was found and I had the embolization and craniotomy to get it taken care of. It wasn’t worth having a stroke, minor or major if I could prevent it.
My recommendation is to get it taken care of as soon as possible. I would not delay if it were me.