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-   -   Hemangioma or Venous Malformation? (http://birthmark.org/board/showthread.php?t=487)

Just Harmony 01-28-2004 09:23 AM

Hemangioma or Venous Malformation?
 
My daughter, age 14 months, recently had an MRI for a lump on her left leg. It is about the size of half of a cherry tomato and is colorless. It doesn't appear to bother her and isn't too noticeable.

Upon completing the MRI, the doctor (a pediatric surgeon) informed us that he was unable to determine if she had a hemangioma or a venous malformation (he used the term lymphangioma). To make an accurate diagnosis, he is recommending a biopsy. According to him, he will know what it is the moment he looks at it. Moreover, he stated that if she had a VM, he could come out during the surgery, tell us and let us decide on the spot to remove it or leave it. All of this can take place as early as this Friday. However, we've decided that we will not schedule the surgery for any earlier than February 13th. We need time to research and think before making a decision.

Now, I know one of the biggest differences between the two is when they appear. However, because my daughter's is relatively unnoticeable, it is possible I missed seeing it until she was 9-10 months of age. I don't think I did, but it is likely. I only found it because I was feeling her leg one day while she was nursing.

My question is . . . is it possible to determine which one she has without doing the biopsy? He said there were a few other things he could try (ultrasound and/or some sort of test), but he didn't think they would be conclusive. In his opinion, the best way to make the determination is to get in there and look at it, then remove if necessary.

Might anyone here be able to offer some suggestions?

BTW, because I am confused as to what she has, I have posted this under the Hemangioma topic as well. My apologies in advance if this is unacceptable.

Just Harmony

Concerned Parent 03-04-2004 01:39 AM

Re:Hemangioma or Venous Malformation?
 
Dear Just Harmony-
I would recommend another opinion before following through the removal of anything. My daughter was diagnosed with Arteriovenus Malformation at the age of three. When she was born she had a large hemangioma marking on her left leg. I was informed by the hospital that the marking was a permanent bruise from where she sat on my hip while in the womb. I trusted the medical professionals and received documentation from them regarding the marking so I would not get turned into child services. Needless to say, this was inaccurate information. Right before my daughters third birthday we noticed a large mass above her left knee. It was as if it came up overnight. I scheduled an appointment with a Pediatric Surgeon who was very informative and up to date on treatments, but was not able to perform surgery on my daughter. My daughter has a type of malformation that can only be removed if medically necessary. Otherwise, the only option for her is treatment called sclerotherapy. We currently work with a Pediatric Radiologist who specializes in this type of procedure. Since the malformation was undetected for so long it has all grown with her body. If removed now, the muscle in her left thigh will have to be removed and she will never walk again. The treatments are not at all painful. The only difficult part is afterwards trying to keep a 6 year old's leg still for 4 to 6 hours. Anyway, my point is to be sure you have exhausted all possible leads before removing the mass from the body. I am not a medical professional, but over the years I have learned a lot about malformations in the lower extremity. I might add, the information is limited when referring to anything below the waist. This web-site has been most informative. Not to mention all of the surgeons we have seen throughout the states. Best wishes to you and your family.


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