In June 2023, I was diagnosed with a left posterior temporal dural fistula type IV following a series of seizures that primarily affected my speech and a persistent “wooshing” sound in my ears. At the end of July 2023, I underwent a six-hour embolization procedure in Cairo, performed by Dr. René Chapeau, who regularly travels to Egypt to carry out these surgeries. While my recovery was slow, there were no significant complications.
A year later, I returned for a follow-up diagnostic angiogram, which was conducted by a local interventional neuroradiologist working in collaboration with Dr. Chapeau. I was given the all-clear at that time.
Now, 16 months post-procedure, I am still dealing with lingering symptoms: persistent soreness on the left side of my head, difficulty sleeping on that side, occasional numbness in the left side of my face (especially my lip), constant pressure around my left ear, and occasional internal heat sensations that are hard to describe. These ongoing issues are deeply concerning.
I’m seeking insight from anyone who might have had a similar experience. Should I consider further diagnostic tests to ensure I’m not living with a potentially dangerous situation?
I have a DAVF, treated by embolization. I also had very sore vessels on the outside of my head, in my case around the five o’ clock position on the back of my head, and also the whooshing sound. However, the soreness on the outside went quite quickly.
Overall, it took me 1½ years to decide I was ok post op, and I’d say that after about 2 years post op, I was pretty much back to normal.
Have you been much the same for a long time or is it getting better but still further to go than you were hoping for?
I don’t know the answers but I believe completely that recovery from brain surgery takes a lot longer than most of us expect. And embolization is not something (in my experience) that you get better quicker from! It’s a sudden switch off of the tap, a sudden re-plumbing of circuits, so that after perhaps years of pressures slowly increasing in some places and slowly reducing in others, the “correct” pressures are suddenly attained. It’s a very weird sensation.
It’s impossible for someone other than your doctor to know if how you are feeling is something to be expected or not. I got a repeat angiogram at a year post op (because I was worried by a sudden dizziness I had had and a general weirdness of odd pressures, especially in the crown of my head) but it showed nothing. My doctor said “I can see no physiological reason” for anything I was experiencing and recommended that I put the whole thing behind me and just “resume normal life.”
Now, we all recognise that doing that is much easier to say than to do! I still had odd sounds in my head, the weird pressure and that one bout of dizziness. However, I resolved to believe that I was fixed: that any remaining weirdness was to be ignored and at about 2 years post op, I’d say I was pretty back to normal. I’d stopped worrying about it and resumed normal life.
That was about 5 years ago now. Life is definitely normal and other than the fact I’ve never gone back to normal caffeinated coffee, there’s nothing I’ve kept as a hangover from my AVM.
Now, it’s always possible that there’s still something going on or might go amiss but I decided for myself that unless it was screamingly obvious that something happening was dangerous, I ignored it. And it has turned out ok for me so far. I don’t consider myself completely free: there must surely be a slightly higher than average risk that it recurs or something similar: but I think it is good, if you can, to put the experience behind you. Pay attention to anything that seems important but otherwise, especially if Dr Chapot can see nothing to worry about, resume normal life.
What have the doctors said about the numbness etc? Do they attribute it to something? How often does it occur and does it resolve after a while each time?
I’m getting closer to the 5 year mark post my hemorrhage & embolization.
I had odd sensations mostly for the first two years or so - similar to what you’re describing
Now, I have a angiogram scheduled in a month because a light whooshing sound/pressure came back on the same side as my AVM.
I’ve had many MRI’s since & a angiogram 5 weeks post embolization. They came back with an answer every time of neurological & CNS damage causing my symptoms.
@Hudzaga Hello and welcome I was treated in Jan of 2012 at Stanford my angio/embolism was 7 hrs . I also had onyx and also medical glue. My DAVF is on the left side where the transverse sigmoid vein should be -it collasped - Anyway the whooshing went away but ever since it developed I feel pain in that area sometimes I get sharp pain, Previously I had a rare stroke that they believe caused the DAVF to form called a CVST -five blood clots in my brain and I was in a coma I was paralyzed and couldn’t talk. I had a second angio in 2015 but they said that some of it had sealed itself and the rest they felt was too risky to touch and might paralyze me. I don’t like to sleep on that side either and it was rather sore for some time.
Have you seen an ENT? I also have something called menieres disease that can cause that feeling of pressure in the ear. But I have it in the opposite ear.
