I had a large dural av fistula with cvd successfully obliterated by embolisation with PHIL. I thought they were using onyx but decided on PHIL.
anyway it was fully obliterated with no side effects and all feeders stopped
I realise from research that it MAY reoccur but from what they have said is ITS FIXED and I can do anything in life like anyone else and it’s unlikely to return.
Now my question is this…while I realise they have to monitor it in some way incase it returns… I have had a contrast mri or ct scan every 30 days for the past 5 months since surgery. And in 30 days they have me booked in for an angiogram and then every 2 years for the rest of my life, I have an angiogram…
I understand the need to monitor it on the off chance it returns but does an angiogram every 2 years for the rest of my life seem excessive or is that smart? From people’s experience…?
Angiograms do carry risk so I can’t work out why they would want such frequent scans and invasive angiograms which carry risk and associated massive amounts radiation from multiple xrays and mris and angiograms when the apparent risk of the “cured” avm returning is apparently so small?
Ha - this is the same exact question I have right now. I just haven’t asked or know who to ask, really
What my neurosurgeon said last time I seen him, when I got my last angiogram was that - they go like this:
CT scan if anything feels off & I come back in
Angiogram after 4 weeks post embolization
If complete obliteration is achieved, then the next one is in 6 months
Well - that’s where my current knowledge runs out.
An angiogram is a semi simple procedure. It does carry a stroke risk + you’re getting beat with as much radiation as a deep CT scan
The embolization itself was about 5x the radiation of a CT scan - due to duration
This much radiation is far from good for our body - I felt like my face/head was on fire(lightly) for over two weeks post my embolization procedure
So now, do I really want to get beat with more radiation? Is it necessary, I don’t know - I really don’t
I was speaking to another member on here & asked on how he handled this post full obliteration. He stated that he never came back for a angiogram for around a decade when his embolization was complete.
So, I don’t really know + it still COVID time & I am trying to stay away from medical facilities
Personally(this is just my opinion, I’m far from a medical professional to take advice from) - I don’t think I’m coming back for a while - if, I continue to feel well. If anything changes, that’s a whole different story
I do a huge amount of research and reading on every topic known to man hence my user name but after reading thousands of pages from clinics all over the world…I’m a little confused on avms
I have done some research on radiation levels and the associated cancer risks and it actually seems relatively small but it does accumulate over time which is concerning
What more concerns me is the angiograms every two years
It seems like you’ve been told the same as me… everything has been fine on the scans so that’s good but the 6 months is coming up
I’m also thinking of not going in every 2 years unless I can see a very good reason to. I will do the 6 months one to double check it’s ok but I was thinking of putting the others off for 4 or 5 years at a time
From what literature I’ve read is that in some countries they embolise and never look again and they found that they should be following them up as they can reoccur with obviously devastating consequences but my wonder is… how often should they be followed up really… maybe not never but maybe not every 2 years.
I’m only fairly young so it’s a lot of angiograms if I live to a ripe old age… and angiograms become more risky with age. I just can’t imagine having my artery cut open every 2 years lol. It scares me having an angiogram honestly
I’m gonna be 40 this month - so, I really don’t know what to say as far as follow ups for this
There are a few things that can occur - I have done hundreds of hours of research on this - might as well, I can & it’s my brain
One - there is a possibility of recanalization, I have found one documented case of this happening
Two - anything else. Lol
But, yes - exactly, the radiation blasts from CT’s & angios no one wants to really speak of. My neurosurgeon was really really informative, he said the same thing. It adds up, right now - I am at an equivalent of about 10 ct scans to my head worth of radiation within a months time. Each CT scan emits about 5 years worth of radiation - so, ummm I’m up to 50?!
Yeah - def concerning to say the least.
I started taking more supplements for radiation support - iodine(kelp) & potassium < I have no clue of this helps anything post exposure
So - that’s all I have for right now on the subject
I woke up 6 hours later - I asked why so long, my rn said the procedure was 4 - the other two they had to fight me off & strap me down to the bed < that’s how I woke up
Stop copying me lol. Jokes. I’m basically same age and also taking supplements. Who knows they work or help but I can’t see the harm
Mine was 3.5 hours but I was in intensive care unit for 2 days after as I literally couldn’t move from pain and could hardly see and had some other concerning issues (that went away after brain settled)
On a side note my nurses were pretty and helpful (from what I could see). At least I knew I was alive and survived surgery lol!
Oh, this is something that I don’t treat as competition
Same exact stuff here - but, I was in icu for 2 days prior due to my rupture - it’s all in my 1st thread on here
And, same after - 5 of the nurses got flowers from me - I’m def a different kind of patient than they are used to seeing - my neurosurgeon actually told me that
I’m not gonna lie or sugar coat things - only thing I really care about is the fact that I feel good now - after this ordeal I know that can change within minutes
But, I have def changed my ways quite a bit - and, I am actually A ok with it
Maybe someone else will chime in on this angiogram frequency question - I did my own research, reached out to a lot of people. Read a lot case studies & this is where it got me
And, you know what - I just thought of this, I’ll reach out my Neuro OR nurse practitioner friend - he always knows 20x more on any of this business than I do
Ok
Does anyone know if it’s “normal” to have an apparently totally obliterated fistula including all feeders looked at via angiogram EVERY two years for the rest of my life? And scans every 30 days…
I guess I’m just trying to see what’s “normal” around the world and clinics.
My friend is a neuro operation room nurse - he said that, it’s a “good” idea to follow your neurosurgeon’s orders - because anything “can” happen
But, it’s ultimately “your” decision - I hate unknowns so much. . . Lol. Unfortunately that is the edge of frontier we are on
This topic has been on my mind quite a bit, let alone the radiation blasts - COVID is still a big thing & I still haven’t caught it, and would like to keep it that way - considering I have been through more medical facilities this year, than my whole life put together
From my perspective - this is just me & my opinion at this point(which can change at any time) - I’ll get another angiogram eventually. . . I spoke to him about my concern of radiation & of what I see going on - The farthest back full obliteration case at Barrow Neurological is 5 years old(my neurosurgeon told me when I asked) - they are working to get the most live data back on their procedures - without me coming back, well - they won’t have that data
He also said - it’s good to know what is exactly going on in there - but, yes - it comes at a price of radiation exposure & a slight stroke risk < easy decision to make, right? Lol
I try to stay as positive as possible, what I do know is that I feel great right now
I also did a lot of reading on truphil Vs Onyx(which i have) and I am barely starting to understand the differences
Hope you’re doing well - thought I’d report back on the info I have tracked down
If you want to see his exact reply & my questions to him - shoot me a pm. . . But, I summarized the whole conversation fairly well
No prob, if it helps - def a strange world out here, that’s for sure
My neuro team out here in the US is super Onyx happy - they seem to have embraced embolization as a primary way of attacking these that do apply - mine consisted of both Onyx 18 & 34
The truphil to me sounds less permanent - since the Onyx base is metal & Truphil a polymer < but, I know that’s just me. Since I have read numerous studies on both - Onyx is a non adhesive & Phil is
That’s where I leave off - that’s enough info to cram into my slightly damaged brain
Can I say its nice to meet another PHILer! First one I’ve met. My understanding is that it is more helpful to the surgeon (less fiddling around in surgery) but more irritating to the patient than onyx.
I can’t say anything about a 2-year review as I’ve simply been told I’m all done and sent home. I did take about a year to feel OK post op and had another angiogram at that year to check but nothing found, so I’m expecting only to go in if I feel weird again, like pre-op. I do know that some people here do have regular reviews, so it isn’t completely unusual. If/when you get to speak to the doc again, you could ask if he/she always recommends a regular review (i.e. their preference for a review) or whether there is some characteristic of your DAVF that is lending them to review you regularly.
I think if it was me, I’d probably turn up for the first couple of 2-year reviews and then ask if there is any need for this ad infinitum. As you say, there are risks and therefore it is worth balancing the risk with the benefit. The other thing that strikes me as a risk from regular angiograms is that you might end up damaging the femoral artery at the entry point, and I’m sure that is not to be done lightly, either. Wrist-access angiogram is also possible but only halves the problem if you’re doing it every 2 years.
Yes I’m just not sure why they want such FREQUENT stuff done for a totally obliterated fistula… I understand they can reform but it seems excessive…
I did question them after the surgery like “is it really fully fixed lol” and they replied “we aren’t in the habit of lying and writing things that aren’t true and its 100% obliterated Inc all feeders”
Well as you probably read in my other post … they were going to use onyx and it was only after my surgery reading my notes that I realised they used PHIL.
I had CVD and from what I have read, sometimes PHIL is a better product to use due to different setting times and allows them to do things onyx can’t such as with reflux fill more with less chance of it flowing into the wrong passages… vice versa
I’ve read studies on both PHIL and onyx and follow ups and both from around the world and both seem to be great.
The hospital that did it here in Australia, uses both onyx and PHIL so I’m sure there’s a logical reason why they sometimes use it. I hope they didn’t just run out of onyx lol
Also I realise everyone has the BEST nuero surgeon or interventional radiologist around lol. Who wouldn’t want the best
But I do have faith in them as these two here travel the world showing other doctors the techniques. They are on YouTube traveling the world to seminars ro educate other radiologists so they are world renowned so I guess I have to put my faith in them
Hello! I am a Dural av fistula “survivor” ( I use the quotes as my fistula wasn’t harming me, I had surgery because the pulsatile tinnitus was ruining my life! ) from the UK.
I was treated with onyx twice ( first time it came back ) and they tell me it is fixed. I still hear a pulse when my head is on the pillow, but if I can’t hear it when I’m walking around then I’m happy!
Now to answer your question - to me the amount of times you have been told to come back sounds excessive. I went for one check up a month after and that is that. Years later and I’ve never been contacted. I’m thinking of going years down the line just for my own curiosity. But no way am I having an angio again if I can help it!
I want to note that you should listen to your neuros as they know best. There is also a chance what you had is far different to mine so maybe require more observation.
I think it would be best to express your concerns to them and hear out their reasoning. In the end of the day the drs can’t make the final decision for you. I understand how awful angios can be.
Ah sorry I didn’t specify! I think it was an MRI with contrast only. I think at that point they were trying to keep the radiation to a minimal as I’d already had quite a lot.
everything has been fine on the scans so that’s good but the 6 months is coming up