New to the forum...concerned about my past embolization procedures

I have been flying every 4 weeks to have embolizations on my hip. I have had five treatments over the last six months. The doctor has not taken any photos (MRI/Arteriogram) since the very first treatment. While the pain has gotten a bit more manageable, I can't help but think the treatments would be much more effective with updated MRI's. With the emotional and physical toll, I am starting to have some doubts.
Has anyone had any similar experiences with the lack of testing to see how effective the treatments are? I am seeing a highly specialized doctor but am considering other opinions. Any recommendations?

Thanks

Hi JKElam,

Sorry to hear about your current concerns.

When I was having my embolizations with alcohol, my doctor (James Suen) had photos taken on a regularly basis. Since being treated with Onyx, they have pretty much stopped taking photos because the dark color of the Onyx makes it hard to see much. It has been somewhat frustrating but I have been with my doctor so long that I trust he knows and can explain the effects of his treatments/surgeries. Your doctor definitely needs to know your concerns though. I definitely understand you needing to see the progress.

Blessings,

Jaz

Hi JKElam. There is a sub-group here you may wish to join…
http://www.avmsurvivors.org/group/extremityavms
I bet some of the members there can answer your questions!

You know all this is fairly new to me, but when your embolizations are done isn't the doctor able to see what all is going on and can see your process??
Jasmine

Jasmine's right!

The embolization starts with an arteriogram. Then the doctor keeps the x-ray going, just like in an arteriogram, because he needs to watch exactly where he places the embolic material. Having extra, separate arteriograms would cause more stress on your body, and more risk of some kind of human error happening.

So ask your doctor if you want to put your mind at ease, but I don't believe you need to worry. Your doctor is getting up-to-the-minute images every time he works on you, and you don't have to go you through a separate procedure for it, because the arteriogram is part of the embolization.

Good news that the pain is going down, and I hope you're getting closer to the end of the treatments! It's OK to be assertive and ask to see a diagram or one of the arteriogram images to show you the status of the AVM now.

JH,

My first two embolizations were done by arteriogram. However, my last 4 embolizations have been through a series of injections and not through an arteriogram. That is why I am a bit concerned. The pain is going down, It just seems odd that no images have been taken for the last 4 treatments.

Jasmine,
You are correct but my last 4 embolizations have been done by injection and not through an arteriogram.