Hello everyone...
It's me again... I have been off here for a while, I think I have been in denial... Or maybe just my way of trying to 'get on with it' and forget?
Anyway.
Previously: MRI indicated a DVAF (consultant wanted a CT to confirm)
Yesterday:
Had CT scan (I feel quite ill today, is that normal from CT scan????)
Saw consultant. He confirmed DAVF, no signs of Glomus tumour (they wanted to rule out).
However... He said that it was up to me whether I progressed with angiogram, as the positioning of fistula is between the jugular bulb and sigmoid area. He said there was only a small chance it had cortical drainage. And that he didn't 'think' by looking at the CT that there was any evidence of it.
I'm super confused now, I asked him what I should do, he said it's up to me to decide. I asked 'what would you advise if I was your sister'... He said probably not! But then when on to say that on the other hand he had seen a similar situation turn out to be an aggressive type of fistula.
Ugh.
I know it's my shout... but anyone have any opinions I'd be REALLY grateful. I'm slightly worried about Angio as I'm allergic to contrast and would have to take steroids and antihistamines for 2 days before, also I have slight clotting problems, ALSO, I know it's double the radiation dose of CT, and I am feeling quite rubbish today after CT from yesterday (i'm a sensitive to most modern chemicals etc)...
Heeellllllllp!
PS I did feel the radiation yesterday, like an electric tingling over my head, it was horrible... The ct man said I imagined it! I didn't! So I know I would freak out after steroids, contrast AND radiation for an angiogram. :-(
Hello Wildpoppy
Well I am sorry your doctor is being confusing it sounds
my personal advice is I would get the angiogram
My DAVF was way more complex than the MRA showed and my DAVF sounds like its in the same place plus it was keeping me awake all the time
The angiogram is the only and I mean ONLY 100% way to know what is truly going on in your head the good news is its not deep
Yes CT scans can make you feel like poo poo I am sensitive to the contrast next time take a benadryl before it may help you feel ok
the steroids at least for me I just take a few days before and they give me benadryl because I do have a reaction to the contrast which of course they said is rare but hello DAVF is rare...
MY DAVF was discovered in Oct and was growing and complex by the time I had my angiogram in Jan of 2012 and I am going back in May because I am hearing something and still have that feeling like burning and someone pulling my hair behind my ear
I know this is scary but personally I would rather want to know 100% clarity what is going on and to stop it from getting worse.
Hope this helps
Angela
Thanks Angela
Yeah, guess it makes sense to have it… Ugh, ugh, ugh! I really don’t know how I’ll cope through it tbh, I will be so anxious.
Strange that you said about pulling hair behind ear, u have that too!sometimes it’s just pins & needles sensation (tingles) on the scalp! Did you have pulsatile tinnitus?
So have they treated your davf? The consultant told treatment would be difficult because of the access to it.
Just another question (sorry!)… Do they give you any idea of what caused your davf??? I have been told an episode of extreme dehydration probably caused mine (I’ve had a few episodes).
I have also been told I can continue all my activities, including taekwondo… And flying on a plane is fine! I hear such contradictory stories.
It all becomes very scary tbh. I think that’s why I disappeared from here for a bit… Couldn’t think about it anymore. Do you ever get like that?
Thanks for your help
Hugs to you
Kimmy
Hello Kimmy
If I recall correctly are you in the UK?
Yes I had the sound bruit etc at first it was only when I was on the sofa turning my head a bit left to watch tv then at night in bed then all the time
I did have embolism with medical glue and onyx in Jan 2012 I did have horrible head pain after and I had a mini stroke.
I started to hear it again last year and decided it was time to get it checked out
They think because I had a massive rare stroke in 2011 which was 5 blood clots in my brain that the fluid build up blew out my left transverse vein and then caused the DAVF some people are born with out one. I have never heard that about dehydration Ill ask on Tuesday
during my pre op
Yes I recall them telling you it was ok to do your activities but I cant believe it cause what if it pops or bleeds?
It is scary but personally I have always been the type to hear the bad news first and have a plan . Being on here help me understand what to expect and what goes on after ward as well
It is totally ok to be freaked out.
They did leave one artery alone because it could paralyze my face they just told me this and did not mention it in 2012
Angela
Thanks for spending the time to answer me Angela. Your story is coming back to me now, you told me bits of it before… How very very scary. 5 clots? My god, what on earth could cause that in the first place??? Awful. You are so brave! I feel like a coward by comparison. So they say the stroke, in effect, caused the fistula. Kind of makes sense. Yeah, consultant thinks that during my non diagnosis of celiac disease (took them 2 years)… I had frequent bouts of severe diarrhea and sickness, often in bed without water for 2/3 days… So he said that I probably had a clot that then then caused the fistula. Scary.
He said the fistula is located in a place where treatment would be unlikely (unless absolutely neccessary). And that cortical drainage chance is small.
Oh I don’t know. I get the heebies just thinking about it. 
He did say that supposing they angiogram, and it’s ok to ‘watch & wait’… That if the bruit went away that they would angiogram again to see if there were any changes. My bruit, in the last year (this is how long I have been waiting for appointments) got SO bad, couldn’t sleep, very debilitating… And I went to an osteopath… Had treatment for a few weeks and it disappeared (coincidence???)… So it was gone for about 2-3 months then came back for a few weeks, now it’s occasionally there, mildly.
Doc said there was little activity… What does this mean?!
I wish I had the presence of mind to immediately digest his words and ask questions there and then! Too late now!
Appreciated that you have helped me, I do think you are right, I need to find out, but I’m petrified! Of procedure and outcome. Thanks again
Hello Kimmy
I would make sure that you are seeing someone that people on here have seen these are extremely rare- At Stanford they only do 12 of these a year and people come from all over the place. You want an expert.
So please either do a search in the search tab or do another post asking for suggestions or if you already and you know you are seeing an expert that is good.
Now Strangely my clots were caused by too much vit K and changing my hormornes the combo- This is what they think so I can not eat or take vit K which is everything green I can have like a cup a day or dash of herbs which have the most vit K
You are not a coward. This is your head we are talking about not a toe. They can do the angiogram which is just diagnostic - the embolism is the part where they try to cut off the blood supply so you can limit it to just the angiogram and there may be parts that are not dangerous to treat or by some miracle I know of one person where his went away this is very very rare.
If you are seeing an expert like me Dr Marks I only want him in my head and thats why I am not waiting any longer cause honestly I fear the younger docs they can be a bit too cocky last one that was assisting Dr Marks was trying to discredit Dr Marks est of time on the table and kinda making it seem like Dr Marks was over reacting. But I said look you are going to have 15 members of my family here and if you tell them 2 hrs and its longer they are going to be freaking out. It turned out Dr Marks was correct and it even went longer now this was with the angiogram and embolism it went 8 hrs. But mine was complex.
The procedure is very strange and I had to be knocked out cause it looked like a spider in my head which when I saw raised my bp then they did a main line iv to my heart which hurts so I wanted to honest punch them which I told them so they knocked me out....:)
Again you have to make the decision but I personally want to know what is exactly going on so that we have a benchmark to go off of. They can do the angiogram and not do treatment.
But please make sure either way you are seeing someone that people on here like and have seen
Angela