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Similar situation, if I may recommend Mayo Clinic – search on dercum’s disease
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ckonenonly posted:
I can relate to your frustration! I too was in a car accident and afterward ended up with some lumps appearing on my lower back in the area where ones dimples would be left and right of L4 and L5 lumbar, just above the sacrum. I am not surprised there has been little response to your post. Most doctors have little to no experience with Lipoma's or fatty tumors, most will think of subcutaneous lipoma and not deep Lipoma's that you are likely experiencing. One of the most frustrating things was I had seen several specialist of which most were hard tissue doctors (bone and spine specialist) whom couldn't understand the sciatica and numbness experienced in my feet and legs. As much as the doctors discounted me, I too discounted their lack of listening to me, and being compassionate. I found three different doctors whom finally were compassionate enough to start to help put me down a path of recover verses just hiding the pain with a bunch of med's. Many doctors and other discount many symptoms and send you off to plastic surgeons and dermatologist because the doctor has no answers. I had blue discoloration around a lump over my spine and over one hip. Doctors didn't even bat an eye and indicated it was a pigmentation of the skin issue, not related. I had two large orange size tumor's removed and 18 months later I had three more in the very same locations the previous were removed from. Of course you will hear from the doctors, that lipoma's may come back. Well I had three tennisball sized Lipoma's just shy of a month ago. To my amazement I already have a new ping pong ball size Lipoma on my right hip that was not there during surgery. I did a lot of research myself and being the oldest grandson, I am the first of my family to start showing signs of what we suspect as dercum's disease. I have now found that other family members are experiencing the same thing and this disease shows up in the late 30's up to the 50's (the car accident may or may not have encouraged the growths, more is need to be known about the disease). Very few doctors have awareness to this disease, and it may be up to you to bring this to their awareness. There is one specialist in the US which is named in this youtube video whom may be able to help. http://www.youtube.com/watch?v=_tfzk2-Gwyg Good luck finding a caring doctor who will hear you out and actually help with some diagnostics. I have a very high pain tolerance thanks to the military breaking me in, but for the average person, the pain of these "so called lipoma" is very intense and direct in the area of the lipoma. Far too little research is done in this area, all the hard tissue doctors looked at me with a nose in the air, thankfully there are a few who listen with an open ear and mind.
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