Greetings,
My name is Isaac, and I have an AVM on my tongue. Thankfully, it hasn’t grown since part of it was embolized in 2017. Besides the occasional episodes of bleeding, it wasn’t a burden until last week when I scratched it. I consulted the neurosurgeon and they said to restart my beta blockers but I was wondering if anyone knows of any specialists in case surgery is needed? I’m in LA and read about Dr Suen in Arkansas but want to know if there is anyone else out there. And can facial AVM providers perform surgery on AVMs on the tongue? Thanks!
Hi Isaac.- I live in Long Beach myself and traveled to Little Rock for Dr. Suen as well. There are so few ENT’s who understand facial avms. Neurosurgeons often don’t even understand brain AVM’s, so it is best to see an ENT for the tongue. I found in my research that the tongue is even less understood and rare, so you MUST find someone who has solid experience. I went to Dr. Suen in 2010 for a consult and had surgery a month later. He is so skilled, kind and always stays in touch with his patients. I actually saw him almost 2 years ago, just as a final visit and I have not had any regrowth since my surgery. Very grateful this has been the case. He was still practicing then, but I’m not sure if he is retiring soon. You should try to reach his office and at least do a consult. He would probably want a copy of your scans and any notes from your current doctor regarding your tongue. I have 2 numbers for Dr. Suen. the main number is (501) 686-7000, and this next number is possibly his office (sorry it’s been awhile), (501) 686-7009. Hope this helps and if you have any further questions please let me know. Please see a specialist though, with A LOT of experience in facial and in particular tongue AVMs. Let me know what happens after you call his office. Let me know if there is anything else I can do to help.
Thanks Isaac.
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Hey thanks for the response I really appreciate it. What’s the name of the procedure he performed and did your insurance cover it? Gonna get a referral to him ASAP. Id love to get his insight on how to manage it.
From my reading around here, the usual treatment for facial and tongue AVMs appears to be a form of sclerotherapy – something that causes the naughty vessels to scar up. However, not all AVMs are treatable or best treated, so it is important to get good advice on what to do. I completely agree with @Debra that tongue AVMs are rare among rare, so finding someone with good experience of treating them is going to need you to travel, I’d have thought.
There are a number of tongue AVM patients in the forum. I have added most of them to the Facial group and posting in this category sends an email about just the first post in each thread, so most people will have seen your post yesterday. Hopefully one or two more will reply.
Very best wishes,
Richard
Hi Isaac,
I can’t say enough wonderful things about Dr. Suen!
He saved my son’s life in 2007. He had been treated at Children’s in Washington, DC for 2 years. We were flying out to Arkansas regularly
for Dr. Suen to operate on his facial AVM. He sees him every couple/few years to make sure that nothing has continued to grow. He is brilliant and a master at all he does. We rue the day that he retires! My son’s story is very long and has many twists and turns.
Please feel free to contact me or my son if you have any questions.
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It was a tongue resection (surgery) and yes insurance approved it with the help of my doctor’s office. Most insurance companies don’t understand AVM’s either. Expert AVM doctors will advise if you can have surgery or other procedures. Best of luck!!
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My facial AVM affects my tongue. A few weeks back I experienced significant bleeding from my tongue and lower lip due to my AVM. Fortunately using tranexamic acid coupled with pressure several time a day over 11 days I was able get control of it. The acid actually cauterized the tip of my tongue and lip. Unfortunately I can tell it is only going to last for a short time. The doctor can see the vessels feeding my tongue and lip but if he attempted to stop the flow it would negatively affect healthy tissues and vessels. In the past he has always been able to occlude problematic vessels. He wants me to see an oncologist as he stated they are experimenting with chemotherapeutic treatments to slow or stunt the growth of facial AVMs. Of course, some of the chemotherapeutic treatments have side affects but I understand they have shown promise..
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