← Return to Dercum’s Disease: Let's create a support group

Discussion

Dercum’s Disease: Let's create a support group

Chronic Pain | Last Active: 3 days ago | Replies (119)
Comment receiving replies
@madvzebra

I would also LOVE to know if there is a skilled surgeon in WI or surrounding states experienced in removing lipomas on multiple Vascular EDS patients. Anyone have info on that? Thanks!

Jump to this post

Replies to "I would also LOVE to know if there is a skilled surgeon in WI or surrounding..."
ellenbret | @ellenbret | Oct 21 1:32pm

Oh how wonderful it is to hear from others sharing my strange medical journey. Misery does indeed love company! I no longer feel I'm going insane. Regarding surgery to remove lipomas, Dr. Herbst states they will just grow back. See my earlier post regarding her plans to research a new drug CBL-514 which will be injected into the lipomas to reduce their size thus decreasing pain. So nice to connect with you ladies! 💜

VIEW AND REPLY
c3p0 | @c3p0 | Oct 24 4:15pm

All I have ever heard is that removing Lipomas only causes more to come. I saw a video from Dr. Herbst where a patient had a lipoma removed and when they removed the bandage there were 4 more. I don't know about EDS so I'm not trying to steer you anywhere but ask questions if you decide.

VIEW AND REPLY