Hospitals in America

As far as doctors who are very good at caring for me I have enjoyed Cooper medical center in Camden NJ the most. Its a teaching hospital so there are a lot of new doctors there that are learning from the resident doctors on staff. Dr. Lackman preformed my surgery and he did a fantastic job, I can move my leg pretty normally now and my nerve pain has subsided considerably. I liked cooper a lot because they bring in the new doctors to meet you and learn about whats wrong with you and have them watch the procedures, so I'm hoping with the samples they have collected from the tissues in my leg and the documentation of my surgery could help someone else in the long run.

As far as reconstruction plastic surgeons have helped me the most especially with my foot. They keep the skin in tact and have the knowledge to re shape my foot into as close of the shape as a regular foot as possible without covering me in scars.

and when I was a child, Shriners and CHOP ( childrens hospital of pennsylvania) all did their best by me as well.

What kind of doctor do you see? What do they specialize in?

I tried to reply to your introduction but it would not let me -so I've pasted it below :-)

Hi there, awesome that you have not let anything hold you back, you sound so strong- good on you!!

I am Irish, I'm 32, and like you, I don't really have anyone to talk to about this! It's so rare, I can't even find numbers on the amount of people who actually have this disease!

I just remember being a young child and being told I was very very special by the doctors

I actually see a lot of orthopedic oncologists and plastic surgeons! mine presented itself mostly in my foot so the plastics doctors periodically go in and re-construct my foot so im able to keep walking! the orthopedic oncologists i see usually assemble teams of neurologists, and vascular surgeons because the large tumor that presented itself in my thigh was suppressing my sciatic nerve and femoral artery so he wanted to be as safe as possible and cover all of the bases. I was honestly blessed to live so close to Philadelphia because I can make it to many of the research hospitals/ some of the best hospitals on the east coast! where are you from in Ireland? My great grandmother is from Roscommon and her husband was either from Dairy or Cork I can't quite remember.
I too know the struggle of being " Special" in doctors eyes. They honestly dont have a clue what to do with you and a lot of it is guess work its really exhausting hahaha