Anyone have an Avm on their tongue

I just had an appointment with my plastic surgeon to get results from my mri. I was shocked when he told me that I would have to have half my tongue removed and replaced with a flap, I couldn’t even think of questions to ask. I don’t know anything about this or if there are any other treatments out there.

No but very serious, your tongue does amazing things, so many we take for granted. Please seek out multiple 2nd-,3rd, opinions before taking on such a drastic procedure. All the best to you will keep you in my thoughts and prayers


Get additional opinions. Yes sometimes parts of your tongue will need to be removed but many times there are other options that could be tried first. You need to make sure you see a doc that treats AVM's all the time. Like daily. Don't trust a surgeon or IR that has heard of them, or just treats a few a year. Extremity AVM's have their own complications and need not only a knowledgable doc, but an experienced one as well. The best of intentions by an otherwise wonderful doctor could be disastrous for you.

Look for a Vascular Anomaly Clinic at a University that you can make a trip to. There are enough out there that someone can give you an informed opinion.

Check out some of the profiles here for others who have mentioned tongue!

Good luck!


WOW, that sounds like a radical approach. I am right in there with Diane and Shalon. Find the docs who do this kind of AVM on a very regular basis. There are alternatives to surgery that might be more appropriate. This isn’t to say your doctor isn’t good, but unless he has LOTS of experience with AVMs he might not be knowledgeable enough to suggest the least destructive approach. My friend says , “If you want something cut off, see a surgeon. If you want something spared, see an internist.” Doctors are just like the rest of us. They do what they were trained to do. Try talking with gamma knife and embolization specialist to see if there is a less radical approach that can be taken. If nothing else. they might reduce the amount of damage to the tongue.

Of course, if your whooshing noise turns out to be another AVM you are probably going to be looking at a different kind of AVM and need a different doctor. Unless there is a real urgency, just take your time.
Best wishes and keep us up to date.


Hi Patrica,
I have a AVM that involves my tongue. I have had four tongue surgeries to remove the bulk, and ulcers. After surgery my tongue was normal, but it all came back. I am going to a great doctor in NY, Milton Waner. Please make sure this doctor has had many AVM patients before you left him do surgery on you. If you want send me a message and I will explain further.
Good luck!!

Hi Cathy, I would love to hear more. I am waiting for another mri and a second opinion.