Hello I am new here. my husband was diagnosed with DAVF and scheduled for embolisation.
My husband is fit without symptoms save for an episode of vertigo and increase in migraines.
He is being treated by Dr Prem Rangi at National Hospital of Neurology and Neurosurgery in London. i didnt see Dr Rangi’s name in the list of doctors, so if anyone has reassuring experience with him please let me know.
Hi,
I’m sorry, I have missed your post for a month! The good news is that @corrine is a strong advocate of Dr Prem Rangi at NHNN, so I think your husband will be in great hands.
I hope you’re both doing ok
Very best wishes,
Richard
Thank you, Richard.
Yes the surgery was successful, it was 4.5h of operation and we now wait for 6 months for the angiogram to see if all is in place.
The glue used, how likely is it to dislodge? Any survivors feedback on this?
Thank you
Hi. I had a DAVF which was flowing into my right transverse sinus. Mine was glued up in 2017 using “PHIL” glue. The more common glue is “Onyx”. I was seen in Nottingham.
Honestly, I don’t know how long this stuff lasts but I’ve basically been told to resume life as normal. I’d say it takes months to feel ok post op. I worried about my condition for about 18 months post op as I got all sorts of odd sensations but the conclusion from further scans was that all was fine and I just needed to get used to the new routes that everything was flowing. I’m still ok, though very very occasionally feel a bit weird.
From reading on here over the last 5 years, I tend to feel that embolisations outside the brain don’t last forever but there seem to be fewer examples of extensively repeated brain embolisations. My own private theory is that being inside the skull, brain embolisations are not subject to the disturbance, movement, etc of an embolisation that might be elsewhere on the body. Everything else outside the skull needs to move, flex with the body. Inside the skull I assume a lot less movement and better protection from such things. So personally I’m optimistic that I’m all done but who knows?
Try to persuade him to relax, get better slowly and resume normal life. I think he will feel setbacks but this mostly is common and not necessarily indicative that things are going wrong. The route to full recovery does not appear to be a straight line. Having this kind of diagnosis and operation is a shock to the system but there are plenty of us here who’ve been through it and your husband should have every optimism about resuming life as normal.
Does he have any residual effects from his AVM or the operation? Or just weirdness / dizziness / strange feelings rather than anything like specific deficits?
Very best wishes,
Richard
Hi Richard,
You are kind to answer so quickly and very informative too.
Besides weariness and inability to look at a screen for too long he is fine. In fact a balance issue attributed to perioneuroma in his sciatic nerve appears to be fixed! So that is an immediate good outcome.
It so positive to hear that you are doing well after 4 years, fingers crossed it stays that way.
How long did it take to resume gym activities and flying, as my husband misses these the most?
Once again thank you for your reassuring words.
I must persuade him to join this forum but I know that he avoids most of them😢
I first went to the gym in September having had the op in April 2017. It felt good but I feel I might have jumped in a bit too quick and a careful return to worthwhile exercise might have been wiser. However, I think it depends on your previous fitness as we have another DAVF patient who used to push big weights who is exercising quite happily (though I think avoiding really big weights).
So, take the advice of your doctor but for my thoughts, do some exercise but try a much reduced version of what you were doing before and work up carefully. Anything weird goes on, step it back slightly and repeat until the weirdness is forgotten, then start to step it up again.
Happy to reply more promptly – you’ve had a big hole in communications for a month! That’s not usual round here, least I like to think not.
Very best wishes,
Richard
I omitted flying for two years.
Gosh, was that on doctors recommendation or personal choice?
I felt odd in the head. Given the NHS queues, when I reported feeling dizzy at about 6 months post op, I had to wait a further 6 months to talk to the neuro and then a further 6 months for outcomes from scans, by which time the holiday seasons were all past. So we holidayed in the UK for the interim.
However, I’m not sure that it was necessary to avoid flying. We definitely have a patient or two who have even flown to and from their operation.
But I also know of another patient with a history of nosebleeds and perhaps a more exposed (and untreated) AVM in that way who has had a big nosebleed at several thousand feet, which must be quite a concern.
Thank you for all the information.
Another question: How long does soreness at the AVM place or headaches last post operation? Just a ballpark range so we know what to expect.
I don’t remember the insertion site being uncomfortable for long but the headaches went on for a few weeks. See the following, and click on the dates to see how many days/weeks elapsed at each post.
But I’d also say that Tylenol/paracetamol is sufficient to keep you comfortable.
Oh thanks for linking me to the thread. Its been 4 weeks with headaches reducing gradually and yesterday out of the blue experienced a slightly stronger headache. Just worried that the pressure may have changed and dislodged the glue. 
Recovery isn’t a straight line. If you get something significant or you’re worried, always talk to the hospital but don’t expect only steps forwards.
Thank you, we will do.