My son was diagnosed with an AVM on his right external ear after seeing several doctors over the last year and a half. We have seen two plastic surgeons. One said it is a very serious vascular malformation & his ear should be removed in order to get rid of the nidus. The other did not seem as concerned & thought possibly embolization or scleratherapy could take care of it. Then laser treatment & minor plastic surgery to make the ear look more normal. In fact, he said until my son wanted to cut his hair short, it probably wouldn't bother him. The ear is not painful, so it is easy to forget about under his long hair. Any advice or suggestions?
i always say try the conservative approach first! You can always go the extreme route later on, but can’t do it the other way around!!
I’d advise to get more opinions. You should absolutely check into how MUCH expereince both of those doctors have with AVM’s. I always caution people to make sure the doctor isn’t confident in their ability, but not actually experienced enough with AVM’s. Not to imply either doctor isn’t bad. I have no idea who they are. But these extremity AVM’s can totally get away from them and end up with more issues than intended in the wrong hands. Personally, I don’t trust anyone who doesn’t work on these weekly if not daily. If the doc has only read about them or done one or two in his lifetime, they aren’t the doc for me!
Doc #1- remove to get rid of the nidus, in theory yes! But the problem is if any of it is left it could grow back with a vengence. Is he certain he will get ALL of it.
Doc #2- embo’s & sclerotherapy- sure, it’s possible. What embolic agent would he use? Some are more permanent than others.
How old is your son? If he hasn’t gone thru puberty it could absolutely “take off” during that time frame as it is often a catalyst to growth. If he has and it didn’t grow, then maybe it isn’t going to be as affected by any trauma.
There is lots of good info here on the board for you. My advice is to absolutely educate yourself on what others have gone through, what treatments they have had, and what the outcomes have been. Ask your docs questions until you are the most annoying patient. You are better off being your own best advocate and making sure you don’t just trust someone without checking out his qualifications. While the AVM may seem small and not a big deal, it can become one. This isn’t routine surgery and not all docs should be, or are qualified to treat them. The best of intentions by them could spell disaster for you if they aren’t well versed!
I hope that wasn’t too harsh of a reply!!!
Good luck
Shalon
I would get more opinions you can never have to many. There is alot of information here and I would research it. Also have a list of questions prepared for the doctors and make them take their time to answer all of them to you are satisfied with their answers.
Take care
Lee Ann
I had the same thing happen to me. The first doctor we saw said my sons AVM on his leg was so serious that only specially trained surgeons in Boston could do it. He said that there were great risks and he should be operated on by just the right people. He told me to wrap his leg everyday and not let him play rough to avoid a rupture. We were worried sick but after a while I started to get a feeling that this was not as serious as he was making it out to be. Our son had bumped it many times without any mishaps and did not complain of pain otherwise. The second doctor we visited took one look at the MRI and said, ok, lets schedule him for surgery in two weeks is that good for you? lol! I was like, okay, so you are not worried about the risks? Nope. He made it like it was not even that big of a deal. The surgery was really a breeze and my son healed lightning fast. Looking back on it I am so glad we went to get another opinion. I think if the second doctor examined your son and said some less drastic treatments could do the trick, go that route. He must know what he is talking about. I asked myself, what was the first doctor so worried about when he told me this was so serious we had to fly all the way out to Boston? (from Hawaii) I learned later that it was because he had never really done AVM surgerys before and that means he was probably only exposed to the scary literature on the subject. I say if you still cant decide go with who is more experienced. My surgeon said he gets about 1-2 AVMs a year.
I agree with the posts below and get more opinions! The doctors seem to be on the opposite sides of treatment. Very hard to choose which one is best for your baby. And yes it is very important to make sure your doctors have treated and understand the complex nature of AVMs. I am curious has your son ever had any headaches? It seems that no matter the place of the AVM the symptoms are very much the same.
He does not complain of headaches very often & there is no pain in his ear.
Jamie Pantelis said:
I agree with the posts below and get more opinions! The doctors seem to be on the opposite sides of treatment. Very hard to choose which one is best for your baby. And yes it is very important to make sure your doctors have treated and understand the complex nature of AVMs. I am curious has your son ever had any headaches? It seems that no matter the place of the AVM the symptoms are very much the same.
We are now in touch with Dr. Levitin in New York who feels that removal of the ear is not necessary. We are waiting to hear back from an interventional radiologist. Prayers for wisdom in decision-making are coveted. Fortunately, there is no pain at this time, only increasing swelling.
Hi Darla, I’m new to the group. My 7 month old daughter was just diagnosed last week with an AVM in her right ear. I’ve known since birth something was wrong–it was extremely hot to the touch and she grabs it constantly–it also pulsates to the touch–was originally diagnosed as “Port Wine Stain,” but that surprised many people because it was so light–very light pink, except for her ear, which was red most of the time. I won’t be able to see my vascular plastic surgeon following her arteriogram for another month and a half due to his schedule, and was told by his nurse yesterday over the phone I needed to prepare myself that my daughter might lose her ear and need a prosthetic…I haven’t even talked face-to-face with doctor’s yet to get the details of what they actually found, and am scared to death. The Interventional Radiologist who did the arteriogram last week called me in the waiting room after the procedure, didn’t even see me in person, and said “yes, it’s an AVM in her ear and it’s an easy fix–I’ll call your vascular plastic surgeon next week and we’ll come up with a treatment plan.” Then the plastic surgeon’s nurse tell’s me over the phone she might lose her ear! Since you’re going through this, can you suggest any questions I might ask when I’m able to meet her doctor’s next month? I’m also wanting a 2nd opinion of cousre, and want to be armed with the right information to pass on to doctor’s I can hopefully find for a 2nd opinion. What is the status of your son? Evidentally, my daughter’s plastic surgeon is consulting his “mentor” in Boston on my daughter’s “tricky case”, as the nurse put it, and that’s another reason I can’t meet with him until next month. Any advice you have would be so much appreciated. I wish you many happy thoughts and prayers, and continued resolve for you along this journey with your son. thank you! Page, mom of Burkley:)
PageB said:
Hi Darla, I'm new to the group. My 7 month old daughter was just diagnosed last week with an AVM in her right ear. I've known since birth something was wrong--it was extremely hot to the touch and she grabs it constantly--it also pulsates to the touch--was originally diagnosed as "Port Wine Stain," but that surprised many people because it was so light--very light pink, except for her ear, which was red most of the time. I won't be able to see my vascular plastic surgeon following her arteriogram for another month and a half due to his schedule, and was told by his nurse yesterday over the phone I needed to prepare myself that my daughter might lose her ear and need a prosthetic...I haven't even talked face-to-face with doctor's yet to get the details of what they actually found, and am scared to death. The Interventional Radiologist who did the arteriogram last week called me in the waiting room after the procedure, didn't even see me in person, and said "yes, it's an AVM in her ear and it's an easy fix--I'll call your vascular plastic surgeon next week and we'll come up with a treatment plan." Then the plastic surgeon's nurse tell's me over the phone she might lose her ear! Since you're going through this, can you suggest any questions I might ask when I'm able to meet her doctor's next month? I'm also wanting a 2nd opinion of cousre, and want to be armed with the right information to pass on to doctor's I can hopefully find for a 2nd opinion. What is the status of your son? Evidentally, my daughter's plastic surgeon is consulting his "mentor" in Boston on my daughter's "tricky case", as the nurse put it, and that's another reason I can't meet with him until next month. Any advice you have would be so much appreciated. I wish you many happy thoughts and prayers, and continued resolve for you along this journey with your son. thank you! Page, mom of Burkley:)
My son, Morgan, is almost sixteen & the AVM didn’t become apparent until he hit puberty although his ear had always been a little red. It wasn’t correctly diagnosed until about a year ago. We contacted a doctor in New York via email, sending him pictures and info from the MRA. He said he always tries to preserve the ear as did the plastic surgeon we are now seeing. A doctor at Children’s Hospital in Houston also said to take the conservative approach with the understanding that later in life the ear might have to be removed. Morgan had an unsuccessful embolization performed in December. His ear looks much worse now than it did before, so he is having surgery in July to remove the three masses of tissue and to do some minor reconstruction to make the shape of the ear more normal. The surgeon said he would not be able to do anything about the slight purplish discoloration, though in the beginning he tLked as if he could. From my research it seems that if the nodus isn’t removed, the AVM can always recur. The longterm health risks according to the doctor who recommended removing the ear are heart problems. Morgan’s AVM is getting its blood supply from the external carotid artery. Boston Children’s is one of the major hospitals that deal with AVM’s as well as training physicians to treat them. Definitely get a second opinion, but it sounds like your vascular plastic surgeon is consulting with the experts. God bless you and your family.
PageB said:
Hi Darla, I’m new to the group. My 7 month old daughter was just diagnosed last week with an AVM in her right ear. I’ve known since birth something was wrong–it was extremely hot to the touch and she grabs it constantly–it also pulsates to the touch–was originally diagnosed as “Port Wine Stain,” but that surprised many people because it was so light–very light pink, except for her ear, which was red most of the time. I won’t be able to see my vascular plastic surgeon following her arteriogram for another month and a half due to his schedule, and was told by his nurse yesterday over the phone I needed to prepare myself that my daughter might lose her ear and need a prosthetic…I haven’t even talked face-to-face with doctor’s yet to get the details of what they actually found, and am scared to death. The Interventional Radiologist who did the arteriogram last week called me in the waiting room after the procedure, didn’t even see me in person, and said “yes, it’s an AVM in her ear and it’s an easy fix–I’ll call your vascular plastic surgeon next week and we’ll come up with a treatment plan.” Then the plastic surgeon’s nurse tell’s me over the phone she might lose her ear! Since you’re going through this, can you suggest any questions I might ask when I’m able to meet her doctor’s next month? I’m also wanting a 2nd opinion of cousre, and want to be armed with the right information to pass on to doctor’s I can hopefully find for a 2nd opinion. What is the status of your son? Evidentally, my daughter’s plastic surgeon is consulting his “mentor” in Boston on my daughter’s “tricky case”, as the nurse put it, and that’s another reason I can’t meet with him until next month. Any advice you have would be so much appreciated. I wish you many happy thoughts and prayers, and continued resolve for you along this journey with your son. thank you! Page, mom of Burkley:)
tLked=talked; nodus=nidus. Sometimes technology can be too helpful.
Darla Sawyer said:
My son, Morgan, is almost sixteen & the AVM didn’t become apparent until he hit puberty although his ear had always been a little red. It wasn’t correctly diagnosed until about a year ago. We contacted a doctor in New York via email, sending him pictures and info from the MRA. He said he always tries to preserve the ear as did the plastic surgeon we are now seeing. A doctor at Children’s Hospital in Houston also said to take the conservative approach with the understanding that later in life the ear might have to be removed. Morgan had an unsuccessful embolization performed in December. His ear looks much worse now than it did before, so he is having surgery in July to remove the three masses of tissue and to do some minor reconstruction to make the shape of the ear more normal. The surgeon said he would not be able to do anything about the slight purplish discoloration, though in the beginning he tLked as if he could. From my research it seems that if the nodus isn’t removed, the AVM can always recur. The longterm health risks according to the doctor who recommended removing the ear are heart problems. Morgan’s AVM is getting its blood supply from the external carotid artery. Boston Children’s is one of the major hospitals that deal with AVM’s as well as training physicians to treat them. Definitely get a second opinion, but it sounds like your vascular plastic surgeon is consulting with the experts. God bless you and your family.
PageB said:Hi Darla, I’m new to the group. My 7 month old daughter was just diagnosed last week with an AVM in her right ear. I’ve known since birth something was wrong–it was extremely hot to the touch and she grabs it constantly–it also pulsates to the touch–was originally diagnosed as “Port Wine Stain,” but that surprised many people because it was so light–very light pink, except for her ear, which was red most of the time. I won’t be able to see my vascular plastic surgeon following her arteriogram for another month and a half due to his schedule, and was told by his nurse yesterday over the phone I needed to prepare myself that my daughter might lose her ear and need a prosthetic…I haven’t even talked face-to-face with doctor’s yet to get the details of what they actually found, and am scared to death. The Interventional Radiologist who did the arteriogram last week called me in the waiting room after the procedure, didn’t even see me in person, and said “yes, it’s an AVM in her ear and it’s an easy fix–I’ll call your vascular plastic surgeon next week and we’ll come up with a treatment plan.” Then the plastic surgeon’s nurse tell’s me over the phone she might lose her ear! Since you’re going through this, can you suggest any questions I might ask when I’m able to meet her doctor’s next month? I’m also wanting a 2nd opinion of cousre, and want to be armed with the right information to pass on to doctor’s I can hopefully find for a 2nd opinion. What is the status of your son? Evidentally, my daughter’s plastic surgeon is consulting his “mentor” in Boston on my daughter’s “tricky case”, as the nurse put it, and that’s another reason I can’t meet with him until next month. Any advice you have would be so much appreciated. I wish you many happy thoughts and prayers, and continued resolve for you along this journey with your son. thank you! Page, mom of Burkley:)
Thank you so much Darla for sharing your family’s story. My thoughts and prayers are with you and your son. Are you in Texas? I’m in Dallas. My daughter’s vascular plastic surgeon (his nurse) is sending her test results to his “mentor” at Children’s Hospital in Boston, Dr. Mulliken, since Burkley’s case is “tricky” and in her ear. From the research I’ve read, even if they decide to treat my 7 month old (Actually, the Interventional Radiologist told us before the arteriogram she would not embolize until she’s at least 2), the chance of the AVM coming back in puberty or when she’s in 30s-40s is very high—something to do with hormonal changes in the body…so I’m getting the feeling that my daughter’s AVM will be a lifelong battle, and beginning to accept at some point, she might lose her ear. Having a new baby and the fear’s that come along with that in and of itself, this is so much to take right now–I just feel numb…how do you prepare yourself for the surgeries and the drastic news your child might lose an ear? My biggest fear is trying to raise Burkley to be a whole person, not a person with an illeness. How has your son been responding to all of the surgeries and changes? What advice can you share? Thank you again Darla, and please keep me posted on your son’s progress and let me know how you’re handling everything emotionally as well. I’m hear to liste anytime. Page, Burkley’s mom:)