Originally Posted by CristinF
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.