Follow-up Angiogram

General
1

Getting nervous! Follow-up angiogram (first one since December's embolization) is June 13th.

My dr. wasn't able to embolize 100% of my DAVF, but he was fairly confident that what was left would die off.

I still hear the slightest whoosh in my ear at night when I'm laying on my pillow and my arm is underneath my ear or if my ear is cupped somehow. I'm afraid that is a telltale sign it's not all gone or died off like he hoped.

I don't hear it at any point throughout the day though, and at night I have to really work to hear it, which is a 99.9% improvement from what it was when I got diagnosed.

Did anyone else continue to hear a faint heartbeat sound after embolization? Or have intermittent headaches? At times I still get strange ones, although they are not debilitating, fortunately.

My neurosurgeon swears they aren't related, but I disagree because I never had any headaches remotely close to these before the onset of my fistula symptoms or after my surgery.

Thanks for letting me vent about my nervousness. I'm so thankful for this community!

2

Hello tennesseeme
I had/have a DAVF I was diagnosed in Nov of 2011 and had my angiogram and embolism in Jan of 2012
Mine was complex over 30 artery attachments and one vein - the vein and one artery was too tiny to get to and I was already under for 7 hours. I had a mini stroke after and was in a ton of pain
The docs wanted to go back in after 2 months but my head was still killing me and I had only heard the whooshing about 10 times- I was told that it was a sign it was still there - I do get very light headed when I am on the floor and stand up and sometimes when I am laying in bed I hear it
I have an appt next month to see my Stroke Neuro and I am sure he will order the proper MRI
I really dont want to have another embolism
I am very scared and I still have issues sleeping and have pain
I think your neuro quite franly is full of poo poo
I do get weird headaches as well as terrible migraines I have occipital pain every day as well that I never had
I really dont blame you for being so nervous- why does he want to go back in now?
Did he do another MRI?
Angela

3

Hi Angela,

Thanks for the reply. I'm sorry to hear about your fistula, it sounds like it was extremely complex with a lengthy surgery. How did you get diagnosed initially? What were your symptoms?

I'm afraid of just what you mentioned - that hearing anything at all means it's still there.

So far I really like my neurosurgeon, and as I understood it, the rationale behind doing another angiogram is two-fold. One being that my fistula never really showed up on an MRA. Two being that he told me the angio was the "gold standard" as far as being able to see what the deal was in the cerebral arteries and veins, plus he said his clinic likes to wait six months to gauge the effectiveness of the surgery, given that they felt it was a successful one, before they look again via the angio.

I get some occipital pain too, so I definitely disagree with my surgeon on that. I do feel that pain I get is fistula related despite his suggestion otherwise. It does seem to be improving over time though.

Do they still plan to embolize the remaining part of your fistula? Best wishes for your appointment next month.

4

My story started in March of 2011 I had a massive rare stroke due to five blood clots in my veins in my brain. I was having terrible headaches for months but just thought my migraines were changing and never said anything to my husband.
I started to get worse and started to show signs of stroke but my husband thought I was having signs of a bad migraine where I throw up
Anyway the doctors thought I had some aggressive cancer that kills you in 24 to 48 hours
and cause I lived for 3 days they did a special MRI called MRV to map the veins so they could do a biopsy but found the blood clots
They failed to mention that I was missing a major vein in my head ( later told that from the pressure building in my head it got blown up)
So I started to hear whooshing but I was pretty out of it and on lots of meds...then the whooshing got worse about 6 months post stroke and then started to pass out so they did the MRA - they saw it and it was retro grade so we scheduled the angiogram and embolism
Yes its true that the only way to know 100% is the angiogram
I also have something called Ehlers Danlos which can make it more dangerous for me cause my artery and veins can tear easy even though I am only in my 40s
I did not know I had it when I had the embolism
I am seen at Stanford and from I know they only see about a dozen people a year from all over the place with DAVF and AVMs so its hard to find a doctor who has a ton of experience
I saw Dr Marks and he said it was lie art work to decide on how he was going to treat it once he saw it via the angiogram
He also is the founder and head of neuro radiology there-
I also see one of the co directors of stroke at Stanford and he is officially in charge of me since my stroke is 1 in a million and most docs never see it during their career, So he keeps an eye on me and I am sure will order an MRA/MRI to see if they can see anything. I do sleep with the tv on which was a habit I got into before I knew what the whooshing was...
And Dr Marks would ask me if I was hearing the whooshing it was either him or the doctor in training who wanted to go back in after 2 months and the other said 6 months but my stroke doctor could see how bad I was so we are just keeping on eye on it
I think whooshing is a sign from my personal experience and what I was told by Dr Marks
Do you hear it when you are laying on one side?
For me its my left side or sometimes when its bad there is no position I dont hear it
please let me know how it goes on the 13th- I hope they got it all and it goes well for you!
Angela

5

Hi .... I had a back to back(week) mobilization last year year, end of April and the following week. It was fully concluded. So I did hear a very faint whooshing afterwards, at night. I haven't gone back for a f/up as I moved out of CA. My nerve endings is just coming back (not fully), so I sometimes feel pain. However, a month ago, I had a very bad case of abdominal pain which subsequently lead to the most intense headache I've ever experienced. It has happened twice so I went to see a Neuro and am scheduled for my overdue follow up angiogram. My pulsating tinnitus has grown louder compared to after the embolization but no way close to the pre times.

6

Hi tennesseeme! I was actually doing some Google searches and came across some of your comments. that led me to join this group and find you. I have a DAVF and live in the Nashville area, Dr. Froehler is also my neurosurgeon. I had my first embolization Aug 25, and my second is scheduled for exactly 1 week from today, Sept 22. He knew going into it that it would probably be a staged procedure because the fistula is 'large and complex'. And during the first procedure an artery was damaged and they had to shift their focus to fixing that and didn't get to repair as much of the fistula as he had hoped.
I don't see any recent posts from you, so I hope you're doing well! Hoping and praying to be rid of this thing for good!

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Hi Small Town Girl!

I'm very sorry to hear about your DAVF, it sounds complicated and worrisome - best wishes for a successful and safe obliteration this time during your embolization procedure. I'm so glad you reached out, and this community is a great one. I hope you'll find comfort and solidarity with your experience. I know I found it comforting to talk to others who could speak the neurosurgery language.

I'd love to hear your story about how you found out you had a fistula. You are in good hands with Dr. Froehler, I was really impressed with my experience at his clinic and he and his staff are awesome. I remember him saying that fistulas were his favorite to treat because they're all so different. I think he is really passionate about what he does, and very compassionate to his patients.

I'm doing good now, my fistula is gone and I'm fully recovered, although I will say it's just different post-surgery. I still occasionally (weekly) get weird stabbing pains behind my eye where my fistula was, and the occasional headache on that side of my head too, but nothing that warrants prescription medication. I imagine it's like having surgery on anything...after surgery you can just tell that your body has been treated there.

If you have questions feel free to reach out anytime! Thoughts and prayers to you for your upcoming surgery. Please keep me posted, I'll be thinking of you.

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I have two. An AVM above my right ear and a dura fistula AVM on the top of my head. Had embolization done July 2nd and go back for an angiogram on October 22. My procedure was 80% successful and my doctor just could not get it fully with onyx. I have headaches almost every day. Feel tired and not myself. Nervous that I will end up having surgery.

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Hello again! My second embolization was Sept 22. I went for my follow-up appointment with Dr. Froehler Oct 19, and he feels sure he got all of the fistula. I will have a follow-up angiogram sometime in March. Recovery has been slow. The 2 nights in the hospital were horrible, I was so sick and my head hurt miserably. I was back at work after a week (I have a desk job), but I probably should have taken 2 weeks. I don't have headaches anymore. My head is still tender to the touch where the fistula was, and of course that part of my head is totally bald. Hoping that all takes care of itself soon! I feel almost normal again, finally, but it was no cake walk getting here. I think you're right, I don't think I'll ever be exactly the same as I was before surgery. I'll just have to live with that.

I'd love to hear your story too! I started having weird, different headaches back in February. Just different from anything I'd ever had before. But I was under a lot of stress so I dismissed it. Then found out my blood pressure was slightly elevated, maybe in May, so started on BP meds and my PCP told me to see him again if the headaches didn't get better. The headaches stayed, always on the left side, and varied in location from temple to jaw to behind my ear. Sometimes a dull ache, occasionally a stab, present daily. I was taking ibuprofen like candy. I went to my dentist because I thought it might be a TMJ issue; he said no and sent me to a chiropractor. Then I started having transient double vision. I guess by this time it was June. Went back to my PCP, he sent me to have a MRI and referred me to a Vandy neurologist. Then I went to an eye doctor, just because of the vision problems and felt like I needed to see somebody while I waited, but she didn't find anything either. After the MRI but before I saw the neurologist, I started to have pulsatile tinnitus. After a couple of weeks of googling my symptoms, I finally pretty much diagnosed myself from the website neuroangio.org, where I read that if you can hear your pulsatile tinnitus with a stethoscope, it's almost always a DAVF. I listened with a stethoscope, had my husband listen, and we both heard it. Went to the neurologist appointment armed with my 'knowledge' from the internet. I don't think she wanted to believe me, wanted to diagnose me with migraines, occipital neuralgia, all sorts of stuff, put me on gabapentin. She did listen and could hear my 'bruit' with her stethoscope so ordered a CTA of my head and neck. Officially that report, along with the MRI, were negative. But she called me and said she'd have a vascular surgeon review the CTA. I took 1 dose of the gabapentin, couldn't tolerate the way it made me feel, and messaged her (this was about a week after seeing her). She wanted to know if she needed to change the dose, etc. I told her no, just please follow up and have a vascular surgeon look at the CTA. Another week went by, and she finally called me back and said the vascular surgeon said he did in fact see a fistula, and told her to refer me to Dr. Froehler. When I got in to see him, it was like a huge weight off my shoulders. He was the first doctor to seem to know what was wrong with me, didn't think I was crazy or just having simple headaches, and it was confirmed by angiogram. And you know the rest of the story!

Please share yours when you have the time!

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I was diagnosed with my DAVM in Nov. of 2011 I had the first part of the embolization a few days later, and after a week of recovery I felt great. After another week I in for the second part of the emboilization (both procedures took over 5 hours). I had follow ups for a couple of years with Angiogram and MRA. Every time I got a headache I would call my doctor. I have been assured all is cleared after the last MRA. In Feb. 2014 I had a concussion, I was checked and again given the all clear. I still get headaches, I still freak out, I still call my doctor. Everytime I do a cardio workout I get headaches. The doctors keep assuring me I'm fine, and that my blood flow takes a different path through different veins and arteries, and that is the cause of my headaches. After the second embolization, I heard my heartbeat faintly when I laid on my left side. Not a whooshing sound just a faint beat. The doctors said it wasn't a concern since it's not the whooshing sound.