Hi I am new on here today and would like to share my story. I have a Dural Fistula and small aneurysm, diagnosed 2011, I had the opportunity to have an embolization at Belfast but because of my personal situation at that time I put it off, I returned to England 2015 and my case was taken up by Consultant Radiologist at Walton centre, Liverpool.however he didn’t seem as keen to do anything just ‘observe’ my condition, I have had several mri scans since but doesn’t seem to be much change in my fistula. But, I never feel well, headaches of all kinds, some dizziness, hallucinations in the night, and don’t know if it has any bearing on my condition but I Have developed speech problems, words of nonsense come out of my mouth, I think what I really want to ask does anyone have any of these unusual symptons, just don’t know if they related to my problem. The main thing that gets me down is the Head Pain, can anyone help please
Anne,
Welcome to the site! Clearly you’ve had your AVM for some time. I assume you are telling the radiologist about changes in your symptoms, all of which sound to me like they could be related to an AVM.
In theory, you are under his or her care but if you’re not getting the listening ear you think you need, you could go to your GP.
I have had a mixed experience with GPs regarding my Dural AVM but the one I saw most recently had either been doing her homework, or at least read up on her patient before I walked in the room; and she was very keen to write to my consultant radiologist and neuro to tell them what she could hear. In my case, I have pulsatile tinnitus – a bruit, a noise – which I can hear but which anyone armed with a stethoscope can also hear, so she was able to describe the area over which my bruit was “auscultatable” (hear-able). We are both convinced that her report has precipitated my operation.
So if you cain’t get no satisfaction with the Cons Rad, try your GP. Pardon the musical reference!
Best wishes,
Richard
Hello Tinysilky
Interesting the new doctor wants to wait. I have a DAVF and after they found it had my first angio/embolism 2.5 months after - The only sure way to know what is going on is an angiogram. You want a doctor who has done many DAVF -
Where is the location of yours? Mine is my left side behind my ear. You conditions sound like you have gotten worse. Can you get a second opinion?
Angela
I had angiogram in Belfast Hospital 2011, due to head pains and bruit behind left ear and some dizziness, The Radiologist Consultant was willing to embolize my DAVM, in fact I even got as far as going in for half a day for pre- assessment, but as I said previously I had personal problems at that time and had to postpone. The Consultant referred me to Walton Centre Liverpool as I had to return to England, after my consultation with him, he had all my previous records and disc images from Belfast. He decided to what they call ‘conservative observation’ in other words 12 monthly MRI scans and see what happens, I also have a 3mm aneurysm. as My Consultant at Liverpool is I believe very good, I didn’t question his decision, so not sure why he didn’t want to do it, maybe NHS cuts, maybe my age 75, I am due to see him very soon again so maybe the situation may have changed since 12 months ago, I certainly don’t feel too good
Hi Anne, Age might be a factor here with your situation, But you should still ask your GP if there is anything else that can be done, no one should be suffering each day with symptoms that are progressing, You should say you want a second opinion from another neurologist. Hope it goes well for you.
Take care
Martin