:D Hello, so glad to be here, I have so many questions. Firstly, I have raised question to Lymphangioma Simplex in the face and neck, with Secondary Lymphoedma. Cleveland clinic has sighted imaging and agree I may have this disease. I have so many clinical appearances in line with this disease it's exhausting. Still I cannot find diagnosis. This is due to a lack of information I believe, but I need diagnosis to then find treatment options. I have read this strain is diagnosed by careful observations of clinical appearance and imaging. I have both of these, but after 5 years feel I've been playing politics. I need an experienced opinion willing to consider this information for potential diagnosis. All other methods have been exhausted resulting in non-specific findings due to scar process.Anyone who may have suggestions (other than see your local Dermatologist), I'd love to hear from you:)
Also, I would like to know if there is anyone who might have experience with performing a lymphoscintography to the face and neck? Can you please tell me if this is effective in this area, or if it may be an effective test for locating a malformation within this area at microscopic level? Is there any other suggestable approach?
Last but not least, is there anyone who may have treated a patient with my symptoms out there yonda?I would like to investigate options from someone who has performed surgical treatment on a Lymphangioma patient and who has an understanding of my strain.
I would also love to offer some positive information to other sufferers. I have taken Lymphoedran for over two years, and the effects have been astounding. Would love to share more info with anyone interested (please keep in mind I am not into sales of this product in any form, just hope my experiences may help others).
thanks for the opportunity, hoping for lots of responses:D