Hello, I have a son who is only 50 days old. He has an AVM on his leg. I would like to know when he could start a treatment and if anyone had been in a similar situation. Thank you all.
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Hello Kal,
Yes, I am in a similar situation. My son is 2 and not yet treated for avms in his leg. There is no easy answer as to when he could be treated. I met with one vascular surgeon who recommended beginning embolization at 6 months. Another recommended close monitoring and intervention when symptoms worsen. There is typically not a cure, and it depends on how extensive the avm is as far as how treatment goes. One interventional radiologist told us that, if possible, it is best to wait and proceed with treatment once the kids are bigger since their veins are bigger then too. Thankfully, our son is developing normally and his avms are not causing pain or wild overgrowth at the moment. Therefore, we wait and will treat when we see the need.
My biggest piece of advice is to find docotors that you trust and who have seen patients with avms. Then, get second and third opinions. I found that I was better able to feel confident in my medical decisions for my kid once I had more input from different specialists.
We live in Greece and unfortunately the Greek doctors have not yet defenses any AVM in BABY leg. They told us that they didn’t had the knowledge in that age and they suggested that we should contact with aboard doctors which had experience in that age.
On June my son is going to make MRA exam and we will see how big is it.
I am sorry for asking you how big is your son’s AVM. My son’s AVM is located in a part of the tibia of his left leg (attached photo). Its surface is 4 cm * 5 cm and its depth is about 1 cm.
Moreover Greek doctors said that it was maybe better to wait and see, but the AVM would grow proportional with the growth of kid. Is that true?
My daughter received her first embolization when she was 4 years old with Dr. Rosen at Lenox Hill Hospital in NYC. She would have received it sooner but was mis-diagnosed as an infant.
Did she have pain when it was diagnosed? How much painful was the embolization for her? Now is she ok? I hope she is fine!!
She had a lot of pain and very bad bruising when she was first diagnosed. Her avm is in her upper thigh buttock area and every time she would sit it would cause her pain. She is 8 years old now and has had 4 rounds of embolization. she seems to do good for about 2 years before she has to go back in.
I would not say her embolization were painful, or at least she didn't complain. And we always saw results (reduced swelling and reduced pain) within the first week. Her team of doctors at Lenox Hospital have always been amazing with her.
I have had about eleven embos at Lenox Hill. I am sixty and dealt with something similar to your daughter's situation. I have all the best to say @ Dr. Rosen and his team. But I believe that I have come about as far as I can, with IR. Initially, the repairs were permanent. But the last few seem to have resulted in a collateral circulation.
So I stumbled upon compression therapy and live is not as painful. Pantyhose, capris were not meant for me. I only have one side affected. Chaps are only for one side; but so much compression of the foot is silly.My calf and leg are fine; they get tingly if they are compressed. That is the MOST compressed site. So now I am onto the velcro compression bandage, just for left thigh but it goes up high. Once I figure out how to keep it from slipping, I think it will work for me. er
There are issues with anesthesia with babies. I am not up to date on that but perhaps it is wise that you held off on it? Also, pain control post-embo. Difficult to titrate dose. Just two more slices of the pie when considering this all. In my case, I am the pt. I feel so badly for you moms out there.
I do not know when it is too soon to start compression? These are just ?s; I know you are #1 advocate for your son and you most likely wd like to know what you might need to go.
A suggestion for your daughter's post-embo pain. I relate to her as my VM is in just about the same area, only on left side tho.
To minimize the pain, I would sit on a "donut" from medical supply store. Made of foam, to be covered by pillow case. Usually used in older ppl to prevent ulcers; necessity is the mother of the invention.
An inflatable tube for floating in pool ; a better suggestion for a child perhaps? Not fully inflated, I'd imagine.
Since I was 8 with similar situation, may I add one think I wish I knew back then? No undies with elastic on the AVM. Many yrs later, I realized bike shorts are so much better. Compression on the exact area. Not just girl shorts, but longer. My daughters wore them in dance classes. 95%cotton; 5%spandex is good. You very well know this all; but someone may not. Tell Dr. Rosen I said hello! You could not have a better doctor for you girls' particular condition. I had 11 embos; recoveries were a good month long. Much more difficult to treat at age 48, when I started; after 2 pregnancies that made it worse. But nothing was available back when I was 8.
Kal, I meant the "donut compression" for Carly's mom. I feel so badly for the parents of a child who has what I have. I even check my grandchildren for any sign of AVM! It is good that your baby's AVM is not in bone or muscle? Or MRA will confirm that. When my leg muscles were toned, they squeezed the VM. So pain was minimal. I did a lot of walking as a youth; it was very healthy for my leg. Thigh muscles were firm adequate compression! I figured it out myself; feisty little red-head that I was.
God Bless your little one. No ropey veins is a good sign. I had bruising, port wine stain and ropey veins in my diaper area. My thoughts are with you and your baby, over in Greece.I have been confused for the exam opinions. Is it an AVM or a VM?
When my son was 40 days old, the lesion was checked with US and was thought to be an AVM.
My son now is 3 months old and he was referred for an MRI. The opinion based on the MRI scan is that it probably represents a venous malformation (VM) located in the skin and the subcutaneous fat with draining perforating veins to the deep venous system, basically the PTVs and to a lesser degree the ATVs.
I concern to get a prompt and indicated treatment for my baby; I am very keen to get consultation and treatment by an expert interventional paediatric radiologist.
So, I have sent the exams to Dr. Rosen. I hope to have soon an response from him. It is difficult for us to come to New York for an advise, since we live in Greece and we have capital controls.
MRI is considered gold standard. So hopefully it is only VM. I do not know what a PTVs/ATVs. what do they mean?
Your baby's MRI sounds just like mine. No muscle involvement. My deep vein system is involved, as observed by Doppler. Some of those perforating draining veins have successfully been embolized. I was always put on a blood thinner after those treatments; to avoid a clot. A superficial vein embo is not at risk for clot; I am told.
As for ROsen, you will be getting top-notch medical plan. It does take a while, but venous is not critical like arterial. One important question: does the blue area change when baby cries? Do veins emerge from surface.
I truly know you are doing everything possible for your baby. I lost the valves to deep veins b/c I was 48 when I sought treatment. So your being pro-active is huge. Sometimes anesthesia is not advised for first year; that may be your best plan.
Rosen trains IRs(AVMS in extremities) all over the world. Maybe one in Greece. Or go to birthmark.org and look into financial help. Kiana has quite a story to tell. Dr. Linda PhD is wondrous. Kiara has raised $$ for airfare on "Go Fund Me". She comes from Trinidad. So don't fret. Rosen is part of a team now, with a vascular surgeon,etc.
Some poster reamed me out outline for "talking down to them".
Well, PTVs is Posterior Tibial Veins and ATVs is anterior Tibial Veins.
About your question. I do not notice that the blue area changes when he cries.
Yesterday, I gave the US, MRI & MRA exams to another radiologist and his opinion was that it was about an infantile hemangioma. I am in desperation and I am looking for a doctor who specializes in children vascular malformations in order to say definitely what is it. I hope Dr. Rosen to answer us.
Hemangioma???? When you already know of deep perforator veins?
That's the diagnosis I got in 1955; suggesting that there was nothing underneath the skin. There were no imaging studies for blood vessels back then.
Thank heavens you have the strength and ability to pursue this to higher levels!
When he was born, everyone told us that it had a hemangioma, but our pediatric said that it was maybe a vascular malformation. When he was 40 days old, he made an US and the radiologist’s opinion was the same with our pediatric. Then he was referred for a MRI &MRA exam. Meanwhile, I had given the US exam to an expert angiology from Franch and had claimed that it was an infantile hemangioma (IH), but I didn’t believe him. The MRI showed that it was maybe a venous malformation. The last opinion of a third radiologist was that it was an IH. Now, I do not know what to believe.
Hi Kal,
I know how confusing this can be with a child. The only reason I waited to have my daughter treated was that she was misdiagnosed and an unnecessary surgery was perform on her leaving her with a 2 inch scar. So I was a little more guarded in letting doctors touch her. I would say trust your gut feeling, I know I wish I had! A mothers instinct is always right
In your case I would wait to hear from Dr. Rosen, he is one of the top doctors in the world for this.
Maybe an angiogram (dye in malformed blood vessel area) would be the deal breaker; but I was happy to never have that as a separate procedure. ROsen would plan procedure based on MRI results; then used the angiogram as a real-time map. I see other ppl having an angiogram done as part of diagnostics.
You have a poster, Tommy's Mom (boy's name) who was told to hold off till 6 months of age. Maybe if you ask her for reason, you'll have the answer and might be more comfortable waiting till all the determinations are in.
I am calling Michelle now, regarding my need for a med history. I'll ask where he is. He could be in Italy. Would you travel to the EU? Send me your name, if you wish.I do not mean to make this sound easy. I handled it all as a middle-aged adult. I'd freak if it was my baby. Must be a mammalian thing; I could see myself standing in a blizzard trying to give info for doctor. I would want the decision made yesterday.
Your baby's VM (I go with the super-specialist, doctor #2. I assume he is well credentialed) is not causing skin break down or ulcers. It does not bulge when he cries; there are no evident ropey veins. He's not in pain; esp. because gravity is not an issue yet. I myself (admittedly NOT the mommy) would be comfortable waiting a few months before making the best decision. It is not getting worse month-to-month, correct? I feel your tension and frustration; all the way from Greece. But if I am reading this correctly, it is okay to wait a few wks for Rosen's opinion. On the birthmark.org site, the administrative assistant's name and # are listed. She knows his schedule and may give you an idea of how long to expect hearing from him. In the US, when a doctor says hemangioma, it means he is not up-to-date on the topic. There are much more specific terminology available, with implications for treatment. Your ped should at least give you a referral to an Interventional Radiologist for Vascular System. Some IRs are strictly for cardiac reasons, stenting and such. And some others are for neuro other than AVMs. I just want to help you feel tethered to the reality that you are correct to wait for the most learned plan. Genetic testing is also advised now; it helps with prescribing treatment. Some babies are good to go with Inderal for a well. Or Timodol. All the best.
I can certainly feel the stress that you must be in with your child. Let me through out the name of Doctor Daniel Barrow, Emory University Hospital, Atlanta, Georgia. This may have value you to you. He was my Dr. for AVM in my spinal cord. It will not hurt to have as many options with names of Doctors as you can get.
Kal, there is a website 'embrace the dots" which is for new moms dealing with babies who have port wine stains. Who knows; you might get some support there from other new moms. But the "dots" are port wine stains" and laser is used.
I keep unsubscribing to that website-it is irrelavant to me-and then someone puts my name back on the list! So today I realized there is an extra box to check so I am definitely unsubscribed.
In no way think, Kal, that your son has port wine stains or needs laser. Just take a gander, if you wish.
Thank you! We are waiting for translating the opinions in order to sent them to doctors for an advice. I hope to have news as soon as possible.