Lymphatic Malformation in Finger
My eight year old son had surgery 2 1/2 years ago for a lump in his finger that, upon biopsy, was diagnosed as a lymphatic malformation. The lump immediately grew back (within two weeks) and has remained about the same ever since (it's growing with my son). Occasionally, the malformation gets a blood clot (which is painful for a few days), but, generally, remains asymptomatic. Recently, a small blister-like formation appeared on the underside of his finger. This week the blister "popped" and we applied home care. This concerns me because it's my understanding that lesions on the outside of the skin can become easily infected, and I'm concerned that the malformation is beginning to progress.
Basically, we have been under the supervision of a doctor knowledgeable in LM's who has advised us to wait until/if the lesion ever becomes more symptomatic. We are fine with this, but just want to make sure that it's the right course of action. My husband and I are conservative when it comes to intervention. Our son had the surgery because his doctors said it was necessary to find out what was causing the lump (which had suddenly sprouted a second lump--which turned out to be a blood clot). He has had no MRI's or any other imaging (his doctor said that, because the lesion is currently asymptomatic, even if an MRI showed the lesion to be more widespread, he wouldn't recommend treatment).
I'm writing because I really want to make sure that we are pursuing the correct line of treatment and would like to speak to (or meet with) someone who is an EXPERT in this field (I like and trust our current doctor and believe he is qualified, but I guess I'm looking for the BEST doctor to address our concerns). This might only serve to set my mind at ease, but at least I would finally know that I'm doing all I can do.
We are currently living in southeastern Virginia, but would certainly be willing to travel if necessary.
Thank you for reading. I know that compared to a lot of the cases on these boards, my son's condition is mild; but, this is my little boy, and I just want to do my best for him. Any and all responses would be appreciated.
Last edited by CristinF : 06-07-2012 at 02:55 AM.