This is my first post here. I'm so happy to find a place like this where we can talk about our common issues. After my last angiogram I was told I have a Pial Fistula associated with my anterior inferior cerebellar artery. It was not possible to embolize it because the artery was too small and tortuous to get the catheter to it. I was told this is a very rare condition. I'm waiting for my next appointment to find out what the recommended treatment is, but it will either be radiation or brain surgery, both of which, I'm not ashamed to say, scare the &$#@ out of me.
So here is a question, does anyone else have a similar diagnosis? If so, I'd love to hear what your experience was and if you have any advice.
Thanks again for being here, and looking forward continuing to live.
No shame whatsoever in being scared by the thought of radiation or surgery. I'd be concerned if you weren't. I did a search to see if I could find references to pial fistula. There wasn't much, I'm afraid but there were a few comments. You can do a search in the top right corner of the home page. I don't have any knowledge of fistulas so I can't speak to those. I will tell you though that this site is full of caring people who are willing to help if they can. Hopefully someone smarter than me in fistua's will repsond and offer some guidance. Best wishes.
The only thing I know about pial AVF's is that they are really really rare and really complex. I hope you can find someone on this site with personal experience dealing with one! Make sure you get a lot of second opinions from doctors on your treatment options. Good luck!
It is scary no matter what the treatment or what type of AVM you have I have a DAVF which is a type of fistula _ going in for my second angiogram and embolism in two weeks and already been told if its the part they left alone they will have to go in a different way which I am gathering means crainitomy which is scary
I hope you are seeing a doctor that specializes in these and I would do a search on here for your area or post a new post asking for suggestions.
Since these are rare and yours is even rare you want someone who has been doing for years and not a newbie
There are plenty of people on here who have had avms and had either radiation or had their skull cut and can tell you how they feel
Even with the angiogram there is radiation and some of your hair will fall out
I got a terrible headache by my left temple and my occipital lobes after the angio/embolism and still have head pain. I now have a pain neuro and ge botox every three months into my skull and it helps.
Just take it one day at a time
Welcome to the group - its very supportive feel free to ask anything and to vent. This stuff is freaky and its hard to disgust much less explain to others who are not going through it
I have a great neuro Dr Michael Marks at Stanford and you can always contact him or his nurse mary to read your scans for a second opinion
Or Dr Lawton at UCSF both are excellent!
Hi, I did a search for you on the Pial Fistula and the results can be seen via this link : http://www.avmsurvivors.org/main/search/search?q=Pial+Fistula Hope the results help . I remember being very scared of the surgery option and it did take time, But I eventually came to realise that there's no point in worrying about something you cannot change. I also know that this is an easy thing to say but completely different thing to come to terms with. Just try get some rest and have faith that everything WILL be OK :) . Take care