I have an update, and some questions, since my previous post 4 months ago.
My unruptured AVM was discovered incidentally in an MRI for migraines, 4 months ago. After some delays on my part, partly just processing all this, I had an angiogram. I am working with two different neurosurgeons right now - I’ll call them Dr. A and B.
Dr. A performed the angiogram. He, at first, said it wasn’t an AVM (while I was still lying on the table), but then a couple of minutes later came back and said it was. At my followup appointment a week later, he showed me the images. He said it was S-M grade 1 (bordering on 2): it is small, slow-flowing, not near a [sensitive area], does not appear to have an aneurysm – in short, if you’re going to AVM, this is a good one to have. To my eyes, it didn’t even look like a tangle of vessels; just one artery flowing into one vein. He recommended microsurgical resection, and said it wasn’t curable by embolization because it was too small. Obviously I am going to check this opinion against others’.
I see Dr. B a few days later. He says that the angio images taken by Dr. A do not show him what he needs to see. He says that this may be an AVM or AVF but he’s not sure, although something is definitely up. I ask him whether he has the complete set of images or whether there might be some IT issue that means he only has a summary set – he seems to think it’s the complete set but isn’t sure. He offers to do another angio, which I have declined for now – it’s not a decision I want to make in a rush. He also offers to review these images in a monthly conference of surgeons that he’s part of, which I enthusiastically accept. (But he thinks they’re bad images and won’t be able to get much out of them anyway.) He seemed annoyed that I was asking him to review someone else’s work.
Dr. A and B don’t seem to have high opinions of each other, based on their own comments.
I had a couple of questions:
My assumption had been that angio images were fairly standard, and that one surgeon can easily read and review another surgeon’s images. Is this not the case? I ask because I was going to send these images to several centers of excellence nationwide, but maybe this isn’t possible? Obviously there is the possibility that these are unusually poor-quality images, but I can’t judge that.
Has anyone else been in a situation where a second angiogram was required for diagnosis?
I think that having the 2 neurosurgeons isn’t a positive, especially if one is not fond of the other… this is your health and the last thing you need is to be having professionals going up against each other in their field.
Personally I would search the groups here to check who is highly recommended in your location and go and see them as a final option… if they want another angiogram, then so be it.
Most specialists don’t like being compared to each other, which I can understand but also think it’s childish for them to get annoyed.
I know this process is tough but you need to find someone you are comfortable with and have them treat you exclusively, which will help you significantly as too many opinions will be overwhelming… please consider many out there don’t have this option… I had a bleed and had no option or time for any second opinions… hope you work this out for yourself and your overall health… God bless!
Just to chime in, in sorry about your finding but at least you found it prior to bleed! What I did, in a similar situation is go to a different treatment facility. I chose Duke, who performed a wrist angiogram and actually confirmed through their greater precision images and more highly skilled doctors actually spared me from going under the knife yet again. Highly recommend Duke University Neurology.
Thanks for the responses. I am in Charlotte NC, so Duke is pretty close by and in-network. I may send them the images and see if they want to do a further angiogram before diagnosing. Right now I am not sure whether it’s an AVM, AVF or even something else.
I wouldn’t say I have 2 neurosurgeons as such, more just seeking a second opinion on the angiogram images. Although both doctors are agreed that I don’t need to act immediately (as far as anyone can tell!).
Just wondering whether it’s common for neurosurgeons to use each other’s angiogram images when giving a diagnosis, or whether they all like to to do their own?
I think it is perfectly reasonable for neurosurgeons to use other people’s imaging and reports. The fact that these two don’t like each other seems to be the issue. If you were to send the images to any of the major neurosurgery practices in the US – the major ones offer a “Remote Second Opinion Program” that allows you to get an assessment based on other practice’s imaging and reports for a few hundred dollars. Also, an angiogram is an invasive procedure: it shouldn’t be done more often than necessary.
Thought no 2, my doctors described by AVM diversely as an AVM and as a [D]AVF. I think the AVF simply means there’s no nidus, really: just a straight shunt. However, it doesn’t lessen the need to understand it or act appropriately. I have understood that DAVFs (dural arteriovenous fistulae) are assessed on the Cognard scale and a type 1 would not normally attract a desire to operate, so if it is a DAVF, a different classification may be appropriate.
I had very differing opinions but based only on MRI before I had the angiogram. Private surgeon said it’s superficial near surface he can whip it out, my nhs team won’t go near it with surgery as it’s in such a delicate location in my brain surgery would highly leave me with issues. I guess maybe the private surgeon would change mind with the angiogram results but I’m not going back to him to find out!