Hello, We live in London and our 2.5 year old son also has a microcystic lymphangioma of the upper lip that's under the skin - looks like a lump. I would appreciate to get in touch with parents to find out about possible treatments. We are currently under GOSH..but keep waiting for a decision to be made - sclerotherapy or surgery..sclerotherapy is not very successful with microcystic lymphangiomas..recently the lump is bruised and my son seems to be in pain...especially at night..i don't know what to do..I would love to get in touch with people with similar problems to find out more. Thanks
Last edited by mundo.kot : 10-13-2013 at 07:39 AM.
Is this still an active thread? My son is 14. Had microcystic lymphangioma of upper lip debulked at age 2. Frustrated with increasing bouts of swelling and ulceration but I don't think additional surgery is the right option. Would like to discuss with others and connect with anyone dealing with similar malformation here in Ontario.
I've not been on here for a while sorry, last year my daughter had 4 treatments of bleomycin injections in her lip. The results were fantastic. The swelling of her lip has gone down a lot. She no longer gets flair ups, ulcerations, or infections.
Her lm is microcystic.
An international charitable
organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate medical professionals for evaluation and/or treatment,
provides informational resources as well as sponsors physician education, mobilizes medical missions trips, and supports research and programs that promote acceptance
for individuals with birthmarks.
Here you will find information and resources for patients and families affected by hemangioma, port wine stain,
arteriovenous malformation, capillary malformation, lymphatic malformation, Sturge Weber syndrome, Klippel-Trenaunay syndrome, and any other type of vascular birthmark
Information accessed through the VBF is presented in summary form
in order to impart general information relating to the diagnosis
and treatment of vascular birthmarks. Such information is not complete
and should not be used as a substitute for a consultation or visit
with your physician or other health care provider. Information accessed
through VBF website is not exhaustive and does not cover every aspect
of vascular birthmarks. VBF makes no warranty as to the information's
completeness, reliability or accuracy. Should you have any health
care related questions regarding this matter, please see your physician
or other health care provider promptly.
Information accessed through the VBF website is provided "AS
IS" and without warranty, express or implied. All implied warranties
of merchantability and fitness for a particular use or purpose are
hereby excluded. VBF shall not be liable under any theory or indemnity.
In no event shall VBF be liable for any damages, direct or indirect,
and all other damages, direct or indirect, special, incidental,
consequential or punitive, are hereby excluded even if VBF has been
advised of the possibility of such damages.