Lymphangioma, propranolol, coblation and hope!
New member here from England and would like to share some thoughts / concerns:
Our 12 year old daughter has had a lymphangioma on her tongue since birth. Some doctors say it is a hemo-lymphangioma. Most of the time it is not a problem, but once or twice it has swollen quite badly needing hospital visits. It has been fine for years but just recently it has flared up again and for several weeks. We have been back and forth to Max Fax consultants who seem as perplexed as they were 10 years ago. We are yet again messing around with steroids and antibiotics at what seems like a random approach to dosage, and with no success. She is in pain and is struggling to eat and drink.
One long night in November I found myself yet again scanning the net for help and found the VBF site and references to Drs Waner and Levitin. I emailed them both and went to bed. The Next morning Dr Levitin replied and we have been in touch ever since. We are committed to visting him in April this year when we are planning to have the first phase of coblation treatment. I don't want to think about the cost but I know it won't be cheap.
I can honestly say Dr Levitin has already given us something we have never had before - hope.
He has and continues to be a source of strength and optimism and I truly believe that he will sort this for us.
In the meantime, with Dr L behind us and with April in our sights, we continue to battle with the UK National Health Service and all its red tape to get our daughter's swelling and pain under control. We are literally experimenting with doses of prednisolone, antibiotics, ibuprofen and paracetamol. We are also considering trying propranolol (as it is supposed to be low risk) although there is no evidence it works on LMs.
I am optimistic for the future for all of us. I think we can help each other and help the medical profession by sharing knowledge.