Lymphadema from Birth in arm.

[kiakia3005]

Hi All,

Please help, I currently have lymphadema in my left arm from birth , I am 25 years old, tried many options massage liposuction. I am trying to find a consultant who will do lymph node transfer , any recommendations?

Thanks

[Rebec]

I don't think that a surgeon will do this type of operation on you as it looks as if you never had any lymph nodes on that site. Also, I would go to the best surgeon as the danger is that the donor area might stop working normally.

[lovesradio]

Can I suggest that you contact LSN? I am sure that there was an article in their newsletter a while back from a surgeon that I think was at Ninewells hospital in Dundee who carrries out lymph node transfer. I don't still have the newsletter which means that it was before Spring 2015, as I only hang on to the last 3 issues! Good luck with your search.

[aepyornis]

Hi, I think you are right to look for this surgery. I have the same condition, also probably congenital, and I will probably undergo this very microsurgery. I would also suggest to contact LSN to see where the nearest clinic with the trained personal to do a proper diagnosis (likely with lymphoscintigraphy or fluoroscopy) and have an adequate evaluation of the treatment (not every centre is equipped or has a trained surgeon to do this surgery).

My surgeon also pointed out that these surgeries have better chances of success when patients are still young so I think you are right to look into it now rather than wait for the condition to worsen.

[beechgirl]

I am in the USA. That type of surgery isn't an option here. I'm sure you've tried the compression and massages. I also have the sequential pump. I have it in both legs. Sometimes I can't leave the house. It is a tiresome and lonely disease. Most people have options to get better. All we have is management. It's a lifetime of figuring it out. I've decided to keep a diary to see why after getting it under control I am now having a flare up. It hurts and I'm miserable. I think why? I survived breast cancer and I believe the radiation caused this. Please you are young be careful about listening to doctors. I worked in a hospital for 20 years. They are just mortals. Be your own medical consumer. I'm 58 and it's taken me years to now do it my way. Good luck!