Pediatric AVM in floor of the mouth - my son

Hello to all. I’m happy to have found this site today. Our son had a lump. We were given a cancer scare. After seeing 2 ENT’s, one was clueless, the other thought for sure it was a ranula (damaged salivary gland duct that continues to build spit/mucuous due to no way to drain). A CT at Children’s confirmed this diagnosis, or so we thought. It was removed 3/16. It was creating a lot of issues - swallowing/lack of eating/problems with certain textures, slurred speech, …

We returned 3/26 for a followup visit. He told us that pathology called and is sure that it was not a ranula, but something called an AVM. I’ve been looking off and on for information ever since.

From what I’ve gathered - its rare for it to happen in the floor of the mouth?

Most of the info. I’ve seen even on this site is that it happens in the brain.

The rest of our story - Both of my kids have 2 neuro conditions and have been in and out of the OR 14 times for the neuro stuff and other “miscellaneous” things. They’ve had extensive MRI’s and CT’s done. I put in a call to our nsg after this AVM diagnosis. They said if they found something, they’d let me know. I haven’t heard back from them, so I’m assuming there’s nothing in the brain for him.?.

At any rate, through their other conditions, I asked if anyone had ever heard of it. I found a mom that had a friend who has them - I think on or in her lungs. She recommended seeing a pediatric vascular dr. or some type of interventional radiologist (I think thats what she called it).

We live in Ohio, but travel to Maryland to see Dr. Carson at Johns Hopkins for their other conditions. I don’t mind returning there to see someone for this.

I’d love to talk to someone about it all - someone who’s been diagnosed as a child, what the future holds, how we know if it will occur in other areas, will it return in the same area, … how to find a dr. who knows anything about this (not just seeing our ENT who was clueless and never seen it before…and seeing him for an unknown amount of time…sigh).

Any insight would be greatly appreciated. Not knowing where to turn to jump our next hurdle.

Thanks!

(I’ve written a book about our journey thus far - didn’t know about the AVM yet. Dr. Carson wrote the Foreword. Its called “Light Will Emerge”. Official release should be next week or the following week. To read more - www.kaciking.com. Its my profile picture.)
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Hi Kaci. You have already been thru so much. It must be so difficult to get this additional news too about your son. Some members here do have facial AVM’s that extend into the lower jaw and neck area. Perhaps you can gain some insight from their stories. Shalon, Steve, Andrea, are some names to check out. I’m sure one of them will be in touch with you.
I guess you are used to gathering your information and asking lots of questions and it looks like you are going to need to do that again. I would think that John Hopkins is one the best hospitals to go to.
I am thinking of you.

Joy, thanks for your reply. I will look into the other members you mention. Thanks! You’re right, we are used to investigating and searching on our own. We live in a very rural area. We have finally found a pediatrician that can help keep an eye on the kids, but the AVM is new to all of us. I’m not sure that this news yet seems difficult - maybe because I don’t understand the extend of it. Thanks for posting the pics of the brain MRI - I’m assuming yours in your profile? The kids have had alot of MRI’s and from looking at those pics I feel confident neither one have it in the brain. (I hate to assume at this point its just Austin even though I shouldn’t assume its Madi too. But when one has gotten a diagnosis, has surgery, it seems a matter of months before the other follows behind. Genetics thinks they have a syndrome, but no one can figure out what. They are doing very well - both physically and academically.) At any rate, I’ve been searching for a pediatric vascular dr. and only seem to come up with one in California. Haven’t figured out how to resource an interventionalist radiologist - or for that matter to figure out which one we need to see (vascular or radiologist).

I feel like I’m rambling. :slight_smile:

Thanks again for your support. I think more than anything I just feel overwhelmed with something else to research - that no one seems to know anything about (family, doctors, etc…).

Hey Kaci, I left a message on your wall also, but decided to read your post too. The interventional radiologist is going to be a guy who does embolizations. And ENT is just going to be someone who does “check ups” so to speak but won’t ever be the doctor that actually treats these. And you don’t need to specifically find a “pediatric” interventional radiologist. If you find a vascular anomaly clinic, those guys see these things day in and day out. They treat people of ALL ages.
Just got back from embo#14 in Denver with Dr. Yakes. It was a slow day for him with only 4 patients. Katie was prob about 8, Allison is 20, I’m 32, and the other lady was probably 50ish. And almost everytime I go I see kids. So don’t focus to much on the pediatric part.

Also take a look at my website and see if you find anything helpful from the links on the side with AVM info.

Let me know how I can help! And try not to be freaked out when you look at my “Timeline pics.” If you get your sons treated now, he won’t ever look like me. So while it may be an eye opener about what “could” happen, don’t assume that this is his future!!!
Shalon

Shalon, How do I figure out which dr. is right for us (Dr. Yakes - embo stuff) or doc who removes them (the guy in NY like you mentioned)? I guess I don’t understand what the embo involves or how to know who should follow him based on the local ENT trying to remove it. Any thoughts? Do you think one of the docs (or their office) would talk to me via email to know what our next step is? If so, could you send me their info? I hope your recovery is going well from #14… (sigh). You’ve sure been through the ringer with it. And no, I’m not concerned about the looks end of it. I know its important in the society we live in. The other condition he has (craniosynostosis) involves the looks end of things too. There have been people that are very accepting and supportive, yet many others that can be very harsh. Austin is so tolerant.

Thanks for letting me know that a pediatric dr. isn’t necessary - thats not been the typical route for us with their other journeys. So I’ll quit focusing on that. :slight_smile:

Shalon said:

If you find a vascular anomaly clinic, those guys see these things day in and day out. They treat people of ALL ages

Kaci, you have a lot going on, I’m sure you’ll get through this. So sorry to hear about both of your children.
You are amazing. I just want to say that because I lived until 49 without knowing I had an avm. There are lots here, most who found out they had avms when they were young. God bless you and your family.

Peace,
Ameenah

Ya know, even though a new diagnosis feels like “a lot” - we are actually in a lull. We’ve always said, the kids seem to know how to keep us moving in every direction. LOL They’ve been doing very well - neurologically, academically, etc… We celebrated 5 yrs out of the OR for their “major” diagnosis last fall (since then, there’s Austin’s ongoing dental issues, tonsils/adenoid removal, hernia repair, and now the AVM recently).

Thanks for your welcome note. I look forward to talking with all of you and getting to know you more.

Ameenah said:

Kaci, you have a lot going on, I’m sure you’ll get through this. So sorry to hear about both of your children.
You are amazing. I just want to say that because I lived until 49 without knowing I had an avm. There are lots here, most who found out they had avms when they were young. God bless you and your family.

Peace,
Ameenah

Kaci,
I am currently under treatment at Johns Hopkins for the AVM and the lead is Dr. Judy Huang. She is a Neurosurgeon. She and her team have just been fantastic.
Good Luck

Hey Kaci- sorry for the delay. As far as knowing which route to go…that is a hard one. It really will end up being which you feel more comfortable with based on the docs, what they offer, the risks. It is difficult to know which is “right” and I’m not sure that any of us know the answer to that (including the docs!) Generally if the AVM is small and still pretty centrally located it is a good idea to surgically remove it. The concern is if they don’t get the entire mass it could grow back. And this has happened. And it is a very real concern. Plus if removed and then grows back there is now scar tissue to deal with and the “routes” to the AVM aren’t as direct. But if they DO get all of it, then it is a very successful way to go. From my point of view, if you have a qualified surgeon (one who sees these all the time) doing the surgery then your risk is low. And then the embo route- well this is less invasive and used to “bandaid” the problem unless the embolic agent is something that will destroy the vessel instead of just blocking it. I’m having alcohol embos which are caustic and scar the endothelial cells which is curative. Yakes goes in slowly but kills all of the AVM before the mass is removed. So there is no/little chance of it growing back. Personally this is the option for me cause my AVM is large, involved, and not the least bit central anymore. But when you send your info over to these guys they will most likely both tell you they can help. And they will tell you how they plan to help. Ultimately you are going to have a tough decision and it’s hard to know which is right. Just educate yourself and ask lots of questions!!!

Contact for Yakes http://www.vascularmalformationcenter.com/ Phone: (303) 788-4280
Contact for Waner email waner@nyhni.org Phone: (212) 636-3977

Kaci King said:

Shalon, How do I figure out which dr. is right for us (Dr. Yakes - embo stuff) or doc who removes them (the guy in NY like you mentioned)? I guess I don’t understand what the embo involves or how to know who should follow him based on the local ENT trying to remove it. Any thoughts? Do you think one of the docs (or their office) would talk to me via email to know what our next step is? If so, could you send me their info? I hope your recovery is going well from #14… (sigh). You’ve sure been through the ringer with it. And no, I’m not concerned about the looks end of it. I know its important in the society we live in. The other condition he has (craniosynostosis) involves the looks end of things too. There have been people that are very accepting and supportive, yet many others that can be very harsh. Austin is so tolerant.


Thanks for letting me know that a pediatric dr. isn’t necessary - thats not been the typical route for us with their other journeys. So I’ll quit focusing on that. :slight_smile:



Shalon said:
If you find a vascular anomaly clinic, those guys see these things day in and day out. They treat people of ALL ages