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Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Lymphatic Malformations (also known as cystic hygroma and lymphangioma)

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Old 06-07-2012, 02:52 AM
CristinF CristinF is offline
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Default 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.
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  #2  
Old 06-07-2012, 11:26 AM
missy missy is offline
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Hi!

Have you asked the expert at http://birthmark.org/experts.php That would be a good place to start if you haven't already.

How is the "popped" blister now? Is it going away with home care?

Missy
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Old 06-07-2012, 01:24 PM
CristinF CristinF is offline
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Thanks, Missy, I'll post in there.

The blister is healing with home care. Really, I'm not sure if it's a vesicle or not (although, being right on top of the malformation, it does seem likely). The thing was, it was never really a "blister' per se--it was more of a weird pink spot (mostly flat). Then, on Saturday, it got kind of inflamed and looked like a blister that had already popped. It's healed over now, but still evident--I'm just kind of waiting to see what happens next with it.

Last edited by CristinF : 06-09-2012 at 11:50 PM.
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Old 06-12-2012, 04:21 AM
sweet pea sweet pea is offline
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Quote:
Originally Posted by CristinF View Post
Thanks, Missy, I'll post in there.

The blister is healing with home care. Really, I'm not sure if it's a vesicle or not (although, being right on top of the malformation, it does seem likely). The thing was, it was never really a "blister' per se--it was more of a weird pink spot (mostly flat). Then, on Saturday, it got kind of inflamed and looked like a blister that had already popped. It's healed over now, but still evident--I'm just kind of waiting to see what happens next with it.
The "blister" you are referring to is actually quite normal. I get those myself and know of many others who experience them as well. They look like tiny red "hemangiomas", as someone else had described them. They can stay there, go away on their own, or even break open. It is important to keep the area clean with the open blister. I have had one that got infected when I was a child and it caused some issues. Although, most of mine just appear and stay there for a while, not causing any problems. Personally, I would suggest getting a MRI of the area, just to know what you are dealing with and it can be easier to track the progress of the Lymphatic Malformation(LM). If there is a big enough pocket area of lymph, you can look into sclerotherapy for treatment which is less invasive and may work better for long term results, depending on his specific case. Hope you are both doing well.
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Old 06-14-2012, 01:00 PM
CristinF CristinF is offline
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Thanks, sweetpea! Everytime something new pops up with his LM, I freak out a little. So, it sounds like your doctors never treated the blisters specifically? Just leave them alone unless they break open, and, if they do, keep them clean and dry? I guess I always try to walk the (oh, so fine!) line between doing too much and doing too little. So far, the LM really hasn't caused him much trouble, but I always wonder if, even though his doctors advise that we do nothing for the moment, we should look further into treatment and try to nip it before it causes more problems.

When you say "track the progress of the LM" what do you mean? I keep reading that, at the early stages, some LMs are "encapsulated" and easier to treat, but that, over time, they develop "tentacles" and can become harder to deal with--has this been your experience?

Also, as an aside, I've seen in some of your other posts that you're a member of the LM Awareness group on FB--how can I join that? I've been to the page, but can't figure out how to become a member. (I'm kind of a technodope.)

Thanks so much for your response! I hope you'll keep in touch--I could really use some contacts who've dealt with this condition themselves.
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Old 06-19-2012, 03:32 AM
jmills jmills is offline
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The Childrens Hospital of the Kings Daughter in Norfolk, VA has some knowledgeable doctors of the condition, but the Drs. I know are otolaryngologists and are treating mostly head and neck. My daughter was treated with OK-432 by Dr. Derkay at this hospital
I highly recommend Dr. Shiels at Nationwide Childrens Hospital, Ohio. He is currently my daughter's Interventional Radiologists and he treats LM's on all parts of the body and is the most successful I know and his results are published. He has successfully treated my daughters neck. He will speak with you by phone for a second opinion.
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Old 06-19-2012, 06:03 PM
CristinF CristinF is offline
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This is so funny! My son's doctors are at CHKD--we've seen Dr. Hoerr (who performed our first surgery) and Dr. Darrow--we LOVE them! They've both said (separately) that we should leave the LM alone for now. We recently got a third opinion from another doctor (not from CHKD) who confirmed that that was the right course for now (although he did suggest we get a baseline MRI to track the lesion--good for you, sweetpea!). I guess now that three knowledgeable doctors (and countless pediatricians!) have told us the same thing, I feel better about the decision. I'm just not exactly the sort of person who can sit around doing NOTHING, so I guess I go around getting second (and third!) opinions...Luckily, my husband is exactly the sort of person who can be content and wait things out, so that sort of tempers my "do too much" personality.

I've heard EXCELLENT things from so many people about Dr. Shiels--it's wonderful to hear that someone is having so much success treating this!
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Old 06-27-2012, 01:56 AM
sweet pea sweet pea is offline
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Quote:
Originally Posted by CristinF View Post
Thanks, sweetpea! Everytime something new pops up with his LM, I freak out a little. So, it sounds like your doctors never treated the blisters specifically? Just leave them alone unless they break open, and, if they do, keep them clean and dry? I guess I always try to walk the (oh, so fine!) line between doing too much and doing too little. So far, the LM really hasn't caused him much trouble, but I always wonder if, even though his doctors advise that we do nothing for the moment, we should look further into treatment and try to nip it before it causes more problems.

When you say "track the progress of the LM" what do you mean? I keep reading that, at the early stages, some LMs are "encapsulated" and easier to treat, but that, over time, they develop "tentacles" and can become harder to deal with--has this been your experience?

Also, as an aside, I've seen in some of your other posts that you're a member of the LM Awareness group on FB--how can I join that? I've been to the page, but can't figure out how to become a member. (I'm kind of a technodope.)

Thanks so much for your response! I hope you'll keep in touch--I could really use some contacts who've dealt with this condition themselves.

Typically, my specialist never treated the blisters, as they weren't really a concern and would stay small. Occasionally, some would "weep"(leak lymph fluid) which I was self-conscious about, but they usually didn't get infected or cause major problems. The ones that did cause problems were treated by a laser(CO2 laser) to get rid of them.

It is a difficult task to figure out what is enough treatment and what is too much. It's different for every case, so it's just a personal choice you'll have to make. Plus, there are a number of different treatment options, which can add to the confusing and complicated decision. Personally, I would look into sclerotherapy as a treatment first to see if that could work before going for surgery. I've been through several surgeries, which is much more invasive and has a longer recovery time. This was back in the day though, so what would be considered the better treatment for today is different. I wish I could have gone for sclerotherapy to see how that worked for me, but by the time it was an acceptable treatment I already had too much scar tissue built up from surgeries.

When I say to track the LM, I mean to watch to see if/how it is growing. Unfortunately, it is true that they can spread out(grow the "tentacles") into surrounding healthy tissue. Mine has spread out farther into my hip and thigh(the tentacles/strands), which you can see in my MRIs. Although, me being an adult, I doubt they'll get much further than where they are now. I always call it the weed, it's unwanted and keeps coming back. Treatment somewhat early in age can be very helpful in keeping it under control, but just not at too early of an age. If it's not growing quickly, you can wait a little bit of time compared to if it is growing you would be more so looking into treatment soon.

There is a LM awareness group, which you can join, although I am unsure of how active it is. The one I am referring to is the LM awareness page on facebook. I started it a couple years ago and put together as much info as I could that I thought could be helpful for people with LMs or individuals with children who have LMs. In the top search bar you can type in Lymphatic Malformation Awareness. It should give you a list of results. There are 2 groups and then the page, which says community below it and 378 likes(for now... it's still growing in size, which is great.) You just click on the page and then click "like" on the page and that is it. You're on it and connected with it.
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Old 08-16-2012, 07:49 AM
rozanaB rozanaB is offline
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My eldest son is now 6 years old and was born with what my current doctor called Lymphangio-venous Malformation. He undergone surgery to move some of the bulging and painful part on his hand from his knuckles to the arm area 6 months ago. Next month we have schedule for removing some of the LM around his small finger and palm. Here in Malaysia, we have no option for sclerotherapy but currently I'm quite satisfy with what we have. The first surgery was a new option when my son started having pain around his wrist from 2 years ago, eventhough not consistently.

I still believe the decision I made 6 months ago was the best I've ever made for him because now I can see he sleep better and was not disturb like before.
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Old 09-14-2013, 09:54 AM
Ranjela4 Ranjela4 is offline
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It is important to evaluate whether the lymphatic malformation is microcystic or macrocystic or both. Rarely, in patients with extensive lymphatic malformations, abnormalities of blood clotting can be seen on blood testing and some may require treatment for this.
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