I need more info about using Onyx for an embolization for a non-brain AVM

I had an embolization with “glue” and a surgical resection of the AVM I have on my L ear, scalp and feeding from the outer carotid artery. I was hoping the AVM would never come back or if it did to at least not come back for 20 years and then hopefully there would be better treatments availavble. But the AVM has returned and spread into the parotid gland (salivary) and the AVM surgeon says surgery would be too risky because a major facial nerve runs throught the parotid gland and there would be a large risk of facial paralysis. I had such a bad experience with the glue embolization including a small stroke that I am very leery about having more embolizations. My doc says the Onyx embolization can only be done so much at a time because of the radiation. Is that radiation from the Onyx or from the procedure itself? He says my hair will fall out on the back of my head but should grow back within a few months. Why does a person’s hair fall out? It didn’t with the glue embolization. He says Onyx is “more permanent where it is used” which trying to decipher “doctor language” I am thinking means when it re-vascularizes you have to do it again. Any info would be appreciated. Kim

sorry to hear your AVM has come back, the hair falls out because of the radiation from the X-ray machine used to route the catheter into the AVM, as the Road map X-ray focuses on this area whilst the Radiologist is gluing up the AVM, the radiation starts killing the Hair Folicles and good cells, the longer you are exposed to the radiation from the X-ray the more likely your hair will fall out. I was under the X-ray in Feb 09 for about 6 hours and the whole of my right sided scalp became bald, my hair grew back 3 months after. I have since had embolixations in Sept 09, Dec 09 and Feb 09 and my hair has fallen out again. but they are saying as my treatment is becoming more frequent and I am being exposed to more radiation near my ear on the right side I may be left with a permenant bald spot. But fingers crossed and I hope it grows back.
Best of luck and I hope your hair doesnt fall out. The more they spread out the embolizations the hair folicles can regenerate and help hair grow again, the close the treatments are too each other will result in the hair folicles being killed by the radiation and permenant hair loss. This is from what I have been told.

Take care Dipen

I believe Onyx is slower to form emboli than glue so you have to be under angiogram much longer. The radiation comes from the angiogram, not the Onyx. And since Onyx just came online in 2005, it’s too early to know how permanent it is. Best of luck to you. (My daughter had an embo with Onyx a month ago.)

I personally didn’t lose any hair from using the onyx but I did smell like garlic for two days.

My daughter has had two embolizations with Onyx. She has lost a significant amount of hair in the back of her head from the top of her ear down. She was also told that it was due to the radiation from the xray machine used to guide the cathater not from the Onyx. Her suurgeries were on June 21 and this past Wednesday August 10th so it is to soon to tell how long it will take for her hair to come back or if it ever will. But… She is alive and well so losing some hair we can deal with. Good Luck in your journey and I will be sending prayers your way!

Thank you all so much for your input and information. God bless you all. I lost my insurance so right now I can’t do anything to treat the AVM.

Lisa–It’ll come back! The first crop of new hair sometimes comes in as a different color or texture…my husband was bald for at least a month after his second Onyx embo, and his usually-wavy hair grew back in ringlets at first, just in that spot. That went back to normal, too!