Hey,
I am a twenty year old guy at college. I found out about this AVM Jan 2010. I had GK a few days after the doctors found it in Ohio. The doctors only found it because I had a bad seizure where I broke one of the EMT’s nose because the Velcro straps didn’t hold my arms. I am going to school in the twin cities and have been going to the U of M campus for this medical stuff now. I was born without legs due to Goldenhar Syndrome and have had plenty of surgeries on my legs but, this Embolization treatment has really got me freaked out. The doctors told me that they are basically gluing the AVM, which I have no idea what that actually means. The docotrs also told me that I shouldn’t have had the GK treatment to begin with. My family is all back in Ohio, I am supposed to have the Embolization treatment Nov 9th and there is a risk that I will lose the little movement I have in my “Nub” (what I have for a leg). what is going on in my head? Where did this come from? This is the first surgery that I am worried about, they said I could have a stroke in my nub? Does everyone freak out about this treatment like I am? My best friends little brother had an AVM but, the doctors found it when he was little and now he doesn’t have full movement of his hand, I cant afford to lose movement of one of my hands. What is going on. I have talked to my friends but, they have no idea of what is going on. Can anybody help?
Hi Larry. You certainly have a lot on your plate as they say… One of the best things about this site is the fact we can vent here. Freaking out is normal. Let us face it…we are not talking about having your tonsils removed. Unfortunately, there is no risk free way to get rid of an AVM. You have been added to my prayer list. I will send you a friend request.
Hi Larry,
It must be scary going through all this. In my opinion, the best way to set your mind at ease is to focus on checking out your surgeon’s expertise. If you can verify that he has a lot of experience with AVMs (especially ones that are like yours), that he has done a lot of embolizations, and that he works on a team of doctors that he can discuss your case with, you can set your mind at ease about whether to trust his recommendations. If you want to look into these things, try googling his name to see if he has written articles on AVMs, look him up on the hospital website, and call his office and ask for whatever information you can’t find. (Some people like to go for a second opinion, but if you conclude that this doctor is more knowledgeable than the one you had in Ohio, then this IS a trustworthy second opinion.)
“Gluing the AVM” means that the doctors start at your hip and snake a tube through your blood vessels (just like they would for an angiogram), until they reach the vessels of your AVM. You have no feeling in your blood vessels, so the process is painless. They move very slowly and monitor where the tube is with images, so they can find exactly the right place.
An AVM is made of useless vessels–they’re too thick-walled for any blood to diffuse out and nourish your brain, so you don’t need them. The surgeon will use the tube to send a hardening substance (like glue, but obviously much stronger!) up to the AVM to fill it up and block it off. He will do this very slowly, and there are images again to make sure the glue is in all the right places.
Once the AVM is blocked off, your blood flow re-routes itself to the ordinary blood vessels, where it will give the rest of your brain a bit more nourishment than it’s been getting. With no blood moving through the AVM, there’s no way for it to break. Then it’s considered stable.
There’s always a risk, like you probably know from your previous surgeries, and your job is to make sure you have the best surgeon you can get, and to make clear to him how those risks would affect your life, since there might be slightly different ways he can do the operation to minimize one risk or another.
If you’re freaking out, you’re completely normal! This is a difficult situation, and you have the right to ask people for help. It might be a good idea to talk to the office of disabilities at your school, to make sure they’re aware that you have an upcoming operation and worries that might affect your performance in school.
Let us know how things are going. We’re all backing you up!
-JH
Thank You,
I have already checked out Dr. Tummala. I think he is the right guy for the job but, this is way different from any of my past surgeries. he flat out told me the risk of a stroke in my nub? He told me its nothing to worry about but, my grandmother died from a stroke. I have never worried about a surgery before and this one is freaking me out a ton. The GK was a few days after my first seizure and I hadn’t left the hospital yet and it was easy. I mean they bolted my head to the table and it was over. I have had two angiograms and that wasn’t bad minus he hole in my groin. And are there different glues? My doctor told me I will smell like garlic for like a week from this onix glue stuff
Ha, yes, Onyx smells so strange! No one can agree on how it smells…I thought it was like fruit, the nurse thought it was like vegetable soup, and I hear garlic a lot, too. Describing the smell is a fun post-surgery game 
Yes, there are different materials that can be used in an embolization, like coils or alcohol or different glues; Onyx is one of the newer ones, and it seems to have a good success rate. My husband’s Onyx has been in place since 2005, and it finished the job. Two different doctors have seen the images and agreed that his AVM is resolved, and nothing more is needed. There were no surgical complications, even though he had to sign a terrifying consent form listing the possibilities.
I wish I could set your fears at ease, but all I can say is to talk through your concern about a stroke with Dr. Tummala. If you haven’t already, consider asking him directly: what is the risk of stroke if you have a different treatment? What is the risk of stroke if you don’t have any treatment? What are the other risks of different treatments or no treatment? (If you have any doubts at all about his answers, keep the possibility of a second opinion in mind; since you’re in MN, you might have access to doctors at the Mayo Clinic.)
My husband’s risk of stroke from NOT treating the AVM was much much higher than his risk of stroke from the embolization. He chose to take the risk under the control of an excellent surgeon, rather than to live with the much higher risk of having a stroke far from a hospital on any other day.
Is someone from your family, or a really good friend, able to come with you to your doctor visits and to the surgery? Can anyone stay with you while you’re waiting for November 9 to arrive? Waiting for an AVM procedure forces you to think about worst-case scenarios, and it’s just too hard to think about it alone.
i had an embolization back in september. i lost movement in my left arm, but i go to occupational therapy to help get it all back. don’t be worried. you said you have no legs, and have had surgeries. you’ve got to be a pro. plus, you’ll be asleep. you’ll be okay. good luck. you’ll be in my prayers.