any one who had or is about to have treatment for AVM fistula in the brain please let me know.
Rick,
Depends what you mean. Sometimes “fistula” is used interchangeably with AVM. It means a knot of vessels, a “nidus” as opposed to a “shunt” which I believe is a more direct / singular / high volume connection.
On the other hand, a dural arteriovenous malformation is more often referred to as a fistula.
I’ve had a dural arteriovenous fistula embolized last year and I’m sure there are at least a handful of us DAVFers here.
What do you want to talk about or ask? Feel free.
Richard
how often do you have to go for check ups after your procedure
My doctor has dismissed me and told me to rejoin life as normal.
But if I were to ever get symptoms that we suspect, he would check me out. I still don’t feel clear of it all, so he did some MRIs this summer that I’m still waiting for the outcomes from.
Hope that helps,
Richard
let me know when you get MRI results . I hope everything would be ok. for you I have to do a angiogram scan. . not looking forward. to it I have no symptoms, but I was suppose to do one post OP a year after which I never did, has been 7 years since my craniotomy.
Thank you!
An angiogram is a bit unpleasant. I assume you had one before and were awake for it, so you know what it’s like. But it is eminently gettable throughable and you’ve already done the king of operations – a craniotomy – it’s nothing like that!
It’ll be a good thing to know all is perfect inside, though.
Very best wishes
Richard
Richard, the longest I’ve waited for MRI/MRA results is like a day. It takes that long?
I honestly rang the consultant neurosurgeon’s secretary back in early August and she said the waiting time on “reporting” was 8-10 weeks. From my past experience of all of this, “reporting” means examining the scan and writing up the observations into text, much as you’ll have seen people publish on here.
Back in 2016 when I finally saw a man who recognised what a bruit was (and could hear it himself) he sent me for an “urgent MRI” without contrast as my first step towards proper diagnosis. I was told that, being urgent, I wouldn’t get a written appointment but to expect the radiology department to ring me to make that appointment. After a month waiting for that phone call, I rang to chase and was told that my request for an MRI hadn’t been assessed yet. The radiology person I spoke to looked at my request and said “ooh, you’re urgent” and booked me in about 3 days later for the scan. After the scan (being urgent) I waited another month. I think I chased a couple of times, maybe after a fortnight. Exactly a month later, I spoke to my ENT consultant’s secretary who told me that despite chasing for me, the radiology department still hadn’t reported on my scan. I made a formal complaint and it was resolved in a couple of hours. But it shouldn’t be like that. I completely agree with you that there is no reason on earth why it makes sense to do a bunch of scans but then sit on them for 2 months. Surely, doing scans is one of the basic elements of a hospital process that needs to be running as smoothly as it is possible to do – a bit like moving people out of a hospital bed once they are good to go – without that, you can see how the whole of the rest of the system just clogs up and takes far longer to do anything.
So… I went to see my primary care doctor because I had gone dizzy back on 8th November last year. He referred me to neurosurgery. My appointment with the neurosurgeon was 8th March this year. Meanwhile, I received an appointment for an angiogram (that actually he said he would cancel but never cancelled) at the end of March. I had an MRI in May. I then had a further MRI in June (because it sounds like the MRI in May either covered the wrong part or he wanted to see other scans as well) and today is the 10 week mark after that last scan.
I did get feedback about the angiogram within a month I think and a very reassuring letter from my consultant interventional radiologist about it. But other than that angiogram feedback and a very snotty letter from the consultant neurosurgeon (written in March but not posted to me until mid June!) I’ve heard nothing out of my visit to the doctor back on 8th Nov last year.
My interpretation of all this is that the care you get in the UK NHS is of the highest order when you’re actually admitted into hospital but the administration of it is pretty useless, especially in Leicester, and that my neuro is too keen to think he is right about everything. He doesn’t believe any of my remaining symptoms are related to my DAVF. I think I saw some performance tables a month or two ago and Leicester are nearer the poorer end of the scale than the more effective end of the scale.
So, yeah, it takes months.
Am I going to complain about it? I might. But you know what, I’m not going to do what I did through 2016 and be the person that tries to fight against the machine every step of the way. No. If I feel noticeably poorly, I’ll go and see my primary doc or I’ll go to the ER if it feels dangerous but in the meanwhile, I’m going to assume it is just benign side effects of my operation that I can feel – stuff that I might have to put up with but is not actually dangerous – until one of the doctors tells me that there is something going on to worry about.
The hospitals have performance targets to meet but I don’t see why it is my job to make them meet their target. The target is supposed to be something that spurs them into action to look after me, not the other way round.
So, I’m playing it as cool as I can.
Cheers,
Richard
I had angiogram 6 month post craniotomy in 2011 I developed dry eyes for a year. Doing better now. No symptoms. I had a AV. . fistula surgically repair in 2011. I read success rate is 87 percent do I need to do another angiogram.
Rick,
If you feel the need to get checked out, get checked out. However, if you’ve got no symptoms from it and you have it fixed back in 2011, I don’t think I would worry to have a scan. But that’s me, not you. If you’ve got any symptoms going on and you’re worried about them, get them checked.
How are you doing?
Very best wishes
Richard