I will visit the site. Maybe I would find something that it could help me. I will spend the following month into finding for answers… Your advises are very helpful. Thanks god that there are people like you who are kind to help.
Kal, it's a good site for bonding with other moms of new babies with vascular malformations. But you stick with us when it comes to info, okay? They are talking laser treatments and PAIN; things you do not need to concern yourself with. Eventually they stop seeing the large facial birthmark; and believe their baby is the most beautiful in the world. Like we all do.
If anything, you will provide guidance for the moms who are astonished that there is anything below the skin. When and if you are ready. A lot of them "doctor shop" b/c they want the doctor who says it's minimal.
Their emblem is so cute: an adorable giraffe with dots. In a nursery theme.
I have some news. From Birthmark.org I found a doctor who lives in Greece. Last week, we had an appointment and he claimed it was difficult to make a final diagnosis, because he was too young and he specialized in facial vascular malformations. He told us that from the MRI exam could be a venous malformation, but venous malformations were not usually located in fat and from clinic view it could be a hemangioma. He suggested wait and see, and when he would be 1 year old, it would be required a biopsy to help confirm the diagnosis.
Yesterday, I had the consultation of an American Interventional Radiologist, who has enough experience in the section of vascular malformations. So, she believes that it is a congenital hemangioma and we could follow it with ultrasound, every six months to see if it is getting smaller and less vascular. I hope she is right.
well,well,well.....all sounds pretty benign?
Now where is my bottle of UZO? (Greek drink that would signal good health?)
How about Rosen? He was in Italy all last wk; just giving a case report at a conference. As you know. I hope I was the case report.
Hello! I’m in the same situation with trying to figure this all out! My daughter is 11 weeks and was just diagnosed with an AVM on her left arm. It’s so confusing and scary!
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Dear Amy, firstly congratulations on your new life.
I know how you feel. For the last 4 months I live my nightmare. How is she diagnosed with an AVM? Did she make an U/S exam? Was the doctor expert in vascular malformations? For my little experience, if doctor is not expert, it is possible to make a wrong diagnosis. Has her lesion changed in color or in size since birth? You should observe it for any changes and take photos every month.
Your daughter is lucky because of living in USA. USA has the best doctors for AVMs. Find an expert doctor near of you. For my research, Dr Robert Rosen (Lenox Hill Hospital, New York) is specialized in Vascular Lesions of Arms and Legs, but you have to have an appointment with him in order to answer you sooner (I had sent him e-mails and mail one month ago and I am still waiting from him). Dr Patricia Burrow (Children's Hospital of Wisconsin, Milwaukee) is expert too; she is very kind and corresponds via e-mail.
Thank you so much for your advice! And congrats on your sweet baby as well. She saw a hematologist who diagnosed her with the AVM. The Dr said that it is an AVM based on hearing a bruit noise when she listened to it with her stethoscope. Yes this has definitely changed since birth. It’s gotten bigger by a lot. And when her arm is held in different positions the area swells out with blood. They said they aren’t doing imaging right now on it, maybe in October. I wish they would have done am ultrasound. I’m seeking out a second opinion now. I hand emailed dr burrow and she said based on the pictures I sent she feels it is a venous malformation instead. So I emailed dr Rosen last night and then two vascular malformation clinics at large US hospitals. I’m just waiting to hear back now. Is it hard to find Dr’s where you are? I’m very sorry to hear that. It’s so stressful for our little ones to have a problem.
Welcome Amy and baby! I was the baby 60 yrs ago, with "bruising" and a port wine stain on my butt, perineal area. Eventually, twisted,,ropey veins developed raised above skin level. No options back then; I'm lucky no surgery was attempted b/c I very well may have lost my leg......Imagine being a baby with this swelling; you honestly don't know any other life. But mine progressively became larger, deeper, very painful after walking. I was labelled "the lazy one"; my mother did not want to hear any "crybaby" comments @ the VM. Indeed, I was a work horse and lived with the pain as well as I could. I would have had a better life if I was born now. But my two adult daughters are fine; as are our two grandchildren.
I have been told that my port wine stain with the ecchymosis (bruise) was an indication at birth that there were abnormal vessels below. A PWS by itself has no such meaning; it is superficial, I am told.
Dr. Rosen was away in Parma, Italy last week: at an AVM conference. He presented a case, I hope it was mine. Look at birthmark.org. So he has been playing catch-up since his return. His specialty is vascular malformations of extremities; and I live 40 minutes from NYC! I started with him at age 48. He always performs procedures on babies first in AM because he does not want them dehydrated. Just joking, but sometimes my coffee withdrawal (no food since midnite) makes me seem entitled to prioritization! Jusk kidding, kids always come first.
Amy, check this out with your doctor, but I would suggest compression since your baby's blood vessels expand.(Even when baby cries?) However, I have a Venous Malformation (no arterial component) and cannot extrapolate what works for me. You would not buy a sleeve, b/c baby is growing so fast. I have a vague memory of loving when I wore tights as a toddler; the compression helped. I LOVED leggings and still wear them, with a tunic. When I was pregnant, I was told to wear a sanitary napkin for compression. That helped. But, silly me, continued to wear underwear with elastic stretch leg openings. Until I saw erosion of the VM. Bike shorts now.
Similarly, these compression issues may help your baby. The fact that your baby's AVM expands may prioritize your case? The docs always want to prevent an ulcer (skin wound). Expansion of the vessel could cause thin tissue to open; but you are dealing with normal, healthy arm skin here. Elevation cannot hurt; do you think you'd want to consider putting baby into an infant carrier while in the crib? Kal is totally correct (and sounds like she has developed mastery of this topic). You will only get a definite diagnosis from a vascular Interventional Radiologist, with a sub-specialty in Extremities. Rosen is one. Look at birthmark.org for other referrals. I always had my MRI's done close to home and then sent to Rosen. Always used same facility, for sake of comparison. You can ask the administrative assistant (SHOUT OUT to Michelle, who works in Rosen's office) just what info should be sent in for the specialist's evaluation. I know Rosen wants to view the actual films, not just the report. I have proximity to Rosen at Lenox Hill. He did u/s and arteriograms during procedures. If you read up on Kleppel-Trenary Syndrome (not our diagnosis unless there is bony difference) you will see suggestions for kids like "us". Aquatherapy helps, even if it is the bathtub. The buoyancy helps lift the blood vessels. And there are stretchy fabrics that can help with compression. (cotton 90%, spandex 10%). Dr. Linda at birthmark.org gave me this piece of info: in burn care, there is a stretchy layer on top of dressings. I looked into it. Certainly, there is stretchy cloth netting/tape that could hold a compress in place on an extremity. My situation required Spanx which changed my life. Of course, never too tight! The compression can act as a tourniquet. Watch the foot/hand as well as the area above the dressing. Temperature should remain the same, no bluish discoloration, no tingling. Also, check for edema. That consequence scared me just recently when I wore a thigh velcro-strap garment. Entire lower torso was swollen. If left undeterred, the heart could become overwhelmed, fluid could collect in the lung.
My new life starts next wk when I receive my custom made garments. I see your baby's elbow, you would not want to cover it and render baby's joint flexibility. It seems overwhelming, at times. I looked at "Embrace the Dots"website; all new mom's with babies with flat,non-vascular birthmarks.Port wine stains. They support each other b/c they lost the mythical perfect baby. People say stupid things to them. We have a whole different set of concerns over here; not aesthetics. The laser treatments are genuinely painful, and no anesthesia is used. I would have a hard time putting my baby thru that, time after time. Those moms are entitled to their "safe harbor". I feel like I am the baby in this particular thread. Hear I have all these mommies who want to give me the best possible care!
Thank you so much for all your help! Maybe you can answer this question for us. When her arm has been bent, the vessels are a light blue/ light Purple and you can’t really feel anything abnormal. But when her arm is straight they turn navy blue and dark purple and you can feel what seems like a ropey ball. Is that similar to yours? Would you say that seems more venous or arteriovenous? The area affected is maybe the size of a dime. Also she doesn’t seem to be in pain from it. She’s just not a fan of straightening her arm very often. I really appreciate hearing your story and I’m so sad you’ve had to deal with this issue for so long. It seems like you’ve lived as normally as possible so many kudos to you!
Why, thank you Amy. Sometimes I worry that I am too wordy. But I'm glad you felt positive @ it. This sounds venous to me. Low flow. When your little angel formed in your womb, her arm was bent so the (A)VM grew in accordance with that framework? That's a good guess. So some vessels are tangled but are not comfortable to stretch. Perhaps down the road, some OT will correct this tendency. I have an anotomical abnormality that developed in compliance with my VM. My left foot points to the left when I walk. I can feel how that movement opens up the area to prevent thigh-to-thigh abrasion. It is half a ballet movement when one squats. My daughter danced and swam their way thru HS: I relived my limited young life thru them. I was a liability in volleyball, with my left foot out. Another girl fell. So we paid for lessons and I really lived vicariously. ...The reason I say VM is mostly the color . Blood returning to heart has less oxygen, and is less red. Also, what you describe is slow movement, not rapid like a red area that fills up quickly. A second explanation of the arem extension issue probably is about return of blood to the heart. If you've seen a drawing of a VM, you'll see how the veins wrap around each other. I am not saying she has cardiac involvement at all. She just prefers what is natural to her. The ropiness sounds venous. The pressure (to fill a ropey area)would present very differently than an artery. I have never wondered if mine might be pulsatile, or that it might suddently squirt blood. It does not get bigger with each heartbeat; that would indicate time for a tourniquet. Are you getting the feeling of what I'm trying to describe? Is the VM on right arm?Actually, the side of the heart would not really matter with a VM of the arm. I think. Of course, you are going to fight this thing with the same verocity no matter what I say, right? I would never want to give the parent the feeling that they can blow this off. Arteries have strong vessel walls, I don't think you'd be getting the ropiness that I have. OK, gotta go.
hi Kal
sorry to hear about your baby!
iam also from Greece and my son almost 5 years old has a brain avm,
we have discussed with Agia Sofia hospital and agree to go to France to make MRI and agiographia to Rothchild hospital by George Rodesh.
i can confirm that hospitalisation was excellent and we apply S2 european document and Government cover hospital expenses.
if you would like more details you can send me an email to
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thank you
eleni
Thank you all for your support. I have just received the last opinion. They beleive that it is a RICH (Rapidly Involuting Congenital Hemangioma). At the end of next month we will make a second ultrasound in order to confirm it.
Amy5? Do you have any news for your baby?
We just went and got her second opinion yesterday. We’re so glad we went! It turns out she has a venous malformation with some lymphatic involvement. So for now she’s good, we’re just monitoring it. It still swells with activity but they told us to use Tylenol and heat as tolerated to help with her discomfort and once she’s 6 months old she can have ibuprofen. They said as she gets a few years older they’ll do an MRI and get her fitted for compression a sleeve. But we’re so happy for her it’s not an AVM! Is your son’s leg getting better?
I am so happy for your little girl. I wish you always have wonderful news. VM is much better of AVM.
Well, my son probably has congenital hemangioma and at the end of September he shall have another ultrasound. Hence, I want to believe that we will have the diagnosis for sure.
I am so lucky that American Doctors consulted us even if we didn’t get there.
My mother was born with a lesion on her right arm. Now she is 57 years old and because of my son-case I found that she had a port-wine stain (capillary malformation). All these years Greek doctors told her that it was hemangioma and lastly she was taking treatment with propranolol. That treatment is only for infantile hemangiomas which by bibliography are involuted until child is 12 years old, but her lesion is getting bigger and bigger. Moreover, she had heart issues because of propranolol.