NCC: EDS Thank you everyone

[Guest guest]

I wanted to thank everyone who has helped me with my EDS question and the

possible surgery. My primary care doctor is going to take over my pain

management and she emailed me to tell me she has been researching EDS and other

connective tissue disorders. I see her this afternoon.

I have run into a roadblock with the mastectomy. My Neurosurgeon wants a Neuro

in the operating room when the mastectomy is being done as he is very concerned

about the VP shunt tubing. My Breast surgeon operates at a hospital that does

not have any Neuro's on board so it looks like I may have to start all over in

the Duke system as that is where my neurosurgeon is. The surgery will be about

8 hours total. He also wants a VP shunt series done before the surgery. They

are recommending a double mastectomy with reconstruction.

I cannot get back to everyone that has helped me out but I apprecaite all that

everyone has done to help me. I will not be on the group much as I really have

to get this cancer taken care of as it is High Grade and is not invasive yet

........so I feel I must put all my engery into getting this taken care of.

I will try to keep Kathleen and updated and if I cannot my daughter will.

You guys are the greatest and thank you for all the support.

Gentle hugs,

Debi