I have a pulmonary AVM and I had pulmonary AVM embolization surgery. The radiologist wants me to get a CT scan every 6 - 9 months indefinitely supposedly to see if additional AVMs show up?
That sounds like a lot of radiation to me. Is it normal that I need to continue getting CT scans that frequently forever?
Do you need to see a radiologist on a regular basis forever?
Hi! Good to hear from you!
I agree, it is a lot of radiation. You could ask if an MRI would be able to show enough rather than CT.
Did you have multiple AVMs in the first place? Because this is not the case for most people but insofar as you’ve had a pulmonary AVM you’re already not “most people”, even among those of us with an AVM. There appears to be a higher incidence of people with multiple AVMs where the AVMs are apparent in the lungs, so it seems more reasonable to me that you are being recommended regular checks than for some others here.
There are definitely a number of us who have regular checks. The only person I remember who has a schedule somewhat similar to you is @AlwaysCurious
I hope something I say might help.
Best wishes,
Richard
I have a similar schedule, doctors have said there’s no problem with the amount of radiation. However if you’re still concerned asking for an mri would probably be the best option.
They are very useful as they have caught multiple more avms that have grown over time.
I had 3 large AVMs embolized in 2013. My interventional radiologist at UCLA recommends cat scans every 5 years. I have many, many very small AVMs due to my HHT disease They are typically very slow growing, if they grow at all. They will not treat them until they are over 2 mm in size.
Every few months is WAY too much radiation IMO. Here’s an interesting article.
I posted an article on CT risks above.
Really interesting discussion. I am due in the new year for a now three year follow up, since my last follow up. Last was an MRI, for this one a CT was suggested, I asked for the reasoning based on a “couple” of radiation exposures I have had. I basically said if there is no advantage to CT, I would prefer MRI. In my case there wasn’t, so MRI it will be. I’m not sure on the criteria, before gamma knife I had both, but now they are satisfied with either. I just get a little concerned as I have had three angios and I believe 6 CTs, but if I am told it will be beneficial I would certainly do it. Take Care, John.
Hi
Apologies if my reply is a little all over the place.
Mine was the same protocol but worse
Sorry you’re going through this.
It might be neccessary, it might not. You might need to be direct and ask why so frequent and why CT and if you’re not happy with the answer, just ask why again until you get an answer that makes sense to you
My guess in lots of cases is that they are being over cautious which I’d rather than not being cautious enough however there still needs to be a happy medium
I also guess that they use many of us as research and test subjects (rightfully so) to check if it’s still fixed so they know what substances work and last for how long as this is the only way they make progress in medicine especially rarer disorders
I also have “guessed” that a CT scan is a lot cheaper and faster than MRI which combined saves a lot of money. I may be wrong but surely this $ saving comes into play
I did research as well as above into radiation and while it’s true each dose is generally quite small and nothing to worry about, if you add them all up plus the radiation of surgery/surgeries… it adds up so if you can avoid this risk with a MRI and it’s suitable for your condition, then I’d definitely choose mri
Firstly i guess ask them if there is a genuine risk that is requiring so frequent scans
Secondly, if there is, ask them if you can have an mri/mra since there is no ionising radiation
Mine was apparently supposed to be ct scan every single month and sometimes MRI which i did for a few months but then i said why can’t it be MRI since no risk in comparison to CT. So since then it’s been MRI with contrast which seems to give them a very clear picture
I stopped such frequent scans as i “personally” found it over the top but i can’t fault how amazing they have all been… Really amazing! True life savers
I was also supposed to have frequent DSA angiograms but i put the first one off and now that was all clear, i don’t plan on having another unless absolutely necessary
I wish you the best
CT scan is like 150 X-Rays
I wonder if there’s something like an MRI but for that part of the body
My wife is a member of the group; our son was born with a large AVM in his left cheek. I am a certified health physicist (radiation safety) with a masters degree in public health and a doctorate in radiological health sciences from the NYU Institute of Environmental Medicine. I am not a medical doctor but I am an expert in radiological health effects. I do not know if MRI studies do as good a job as CTs in providing the needed information enabling treatment, so that question is best left to the doctors. But what I can share is this. We have been forcefed radiation phobia our entire lives. We are taught that all radiation, no matter how low the dose, increases our lifetime risk of cancer. What my 30 + year career has taught me is that this approach to radiation safety is not supported by science. The propogation of this fear harms society in many ways, one being when patients are afraid of medical procedures that are necessary to help diagnose or treat disease, or for that matter when physicians opt not to use procedures involving radiation because they think they are saving their patients from some future risk of cancer. It is a no brainer - when we are dealing with life threatening disease, do not compromise care to lessen a hypothetical future risk, especially when that risk is not supported by sound scientific evidence. There are literally thousands of studies published over 50 or so years that demonstrate that the carcinogenic impact of radiation is only ‘real’ following high doses and at high dose rates (much higher than the doses from CT). Note, I am not saying that radiation isn’t carcinogenic; it is a relatively weak carcinogen, but only at very high doses. This conclusion is supported by studies of radiation workers, people living in parts of the world with unusually high natural background radiation levels, people impacted by the Chernobyl and Fukushima accidents, nuclear submarine workers, and a host of studies in various species of animals. So while I would endorse questioning the medical team to find out if MRI is comparable with respect to providing the needed information, I would also endorse having the relatively frequent CT scans if that is the best means of caring for the patient.
My schedule is a scan every 3 years to see if it grows enough to be treated again. My pulmonary specialist did not want to scan more often than that due to radiation risks.
I only See the interventional radiologist if/when it’s time for another embolization procedure.
Hi @computeruser. I want to connect with another pulmonary AVM patient. Would you have time to share some information?