Hi all - I’ve recently been diagnosed with a facial AVM in my jaw and surrounding muscles. It was found after getting MRA and CTA scans that I got after having persistent symptoms after a jaw correction surgery. I’m struggling now with moving forward with a treatment plan. I’m nervous because resection is not looking feasible. It’s a diffused AVM in my cheek. After doing so much reading, it seems to me that initial approach is important. I’m deciding between two specialists, one of which recommends glue/onyx and some alcohol for embolization, hoping that will be enough to control and discontinue growth. The other specialist has recommended various embolization agents, but says alcohol might be too dangerous and I should also plan to work with plastic surgeons in the future. I’m obviously worried about it growing larger, nerve/tissue damage, and the cosmetic impacts. Does anyone have any thoughts on a more an aggressive approach early on, versus one that might hopefully be less damaging but not as permanent?
Hi @maybe_amy
It’s great you found us!
I think don’t rush forwards unless your doctor has been plain with you that urgency is important. Often we think of these things as urgent but they may not be. Take your time getting a number of opinions before you act. I am not a facial AVM patient but facial seems one of the more difficult to do things with and is rarer, so I would encourage you to find as many people with the best credentials and lots of real world experience to tell you what they would do and why. Then take your pick.
Also, one of the outcomes may be to leave it well alone or do the minimum that is needed each time rather than the maximum, if that makes sense? From my very brief understanding of diffuse AVMs, these tend towards causing necrosis in a wider space than with a more discrete AVM, so getting the right advice is key.
I’ve moved your post where the other Facial folk should find it: you need that shared experience with Facial people not so much brain- or other AVMers. I’m a brainer myself.
Where have you currently been seen / where have you asked for an opinion so far?
Very best wishes,
Richard
Where are you located? My daughter has a diffuse AVM which includes her entire right ear, surrounding scalp and most of right neck.
Her specialists are at Arkansas Children’s Hospital-Dr. Gresham Richter-at the Vascular Anomalies Center. He also works with UAMS-Dr. Suen-facial specialist.
I would send them your MRI and they will consult with you.
My daughter has been a patient now for almost 13 years—she was also part of a clinical trial for a year which decreased the size and volume of her AVM by 50% taking an oral medication daily. They may still be accepting patients.
There are many options besides embolization-glue-these highly controversial and not always great results. Please check into Arkansas Children’s (he treats adults) and Dr. Suen at UAMS -University Arkansas Medical-he treats adults with complicated diffuse AVMs.
Best of luck-Page in Texas-Burkley’s mom
Dr. Suen at UAMS is the best there is! Dr. Richter is also excellent. My son has been in Dr. Suen’s care for around 18 years. He had a monster AVM in his cheek and jaw that was made so much worse in the 2 years prior to us finding Dr. Suen. My son checks in with Dr. Suen every couple of years to make sure that the AVM has not started growing.
Please contact me for more information or if you would like to speak to my adult son.
Keep the faith!
Bonnie
Is the pill your daughter takes some type of chemo therapy medication. Reason I ask is my facial AVM continues to grow even though I am now 69 and my neurosurgeon wants me to see an oncologist to consider some type experimental chemo therapy treatment or medication intended to slow the AVMs growth. would appreciate knowing what has reduced size of your daughters AVM. THANKS!
Steve
Which option did you end up going with?
Yes-the medicine was oral Cobimetinib (I think that’s the spelling). They also use another ‘mentinib’ family medicine in the study. We did the trial ‘22-‘23 and she took oral meds 28 days and 7 days off. She had to go monthly to Arkansas to get monitored for side effects-blood work, MRI with contrast, echo’s and eye exams. It was a lot, but at least it wasn’t surgery. She has had 34 surgeries so far. We are thankful the volume shrank, but now that she has a dose of hormones-she’s 14, her AVM is very symptomatic. The side effects of drug were not fun for an active 12/13 year old, so we discontinued after study and went back to surgeries with Dr. Richter–2 since the study was over. Now that she is so symptomatic, and her AVM affects her physically daily, we may ask to go back on the meds. Her doc for the trial was Dr. Joanna Mack at Arkansas Children’s-she works with Dr. Richter-we LOVE her! Dr. Mack is in Vascular Anomolies clinic and Hematology.
Hi everyone - Just providing an update.. Apologies for the delay in responding. This entire experience continues to be emotionally draining. I went with the Dr. that initially recommended ethonal after telling him I was not comfortable with that agent and he suggested bleomycin. I had a few procedures with him before switching to another specialist with more experience and have had small improvements. Now consulting with other doctors regarding resection which makes me really nervous. Has anyone else had experience with oral chemo medication? How does it work?
Hi Bonnie - I would like to get in contact to hear about his experience. Thank you!