Hi All new to the discussion boards. I am finding more information here than I wanted initially. I came here out of concern for helping my wife but finding help for myself as well.
I think my wife has EDS. Things started shortly after we were married. In 1980 she underwent surgery for severe 92 degrees of Kyphoscoliosis. She had 18 bone graphs, tefflon discs, Lukie rods and cables. We thought then that things would be good there after and they have been for her back.
Six years ago she underwent a radical histerectomy for uterine cancer and at that time had to correct a huge hernia that must have developed after her c section with my daughter. At that time the incission did not want to hold together very well and we ended up back in the hospital.
Two years ago she had a bilateral knee replacement and at that time the surgeon said he had not seen more deterioration in someone as young as she was.
Friday she had foot surgery on her left foot and the surgeon ended up putting in 36 titanium plates and screws to fuse the foot from the ankle all the way to the big toe. The surgeon's comment way that he found way more instability than he had ever seen before and had to keep going. He said there was very little really keeping things together. Her right foot is more stable but she has a huge bunion on that foot and hammer toes on both feet. Her thumbs are now arthritic and deteriorating. She is 52yo.
Before we were married she had teeth braces but they had to spread the roof of her mouth to make room for her teeth. She takes extra care of her teeth but still needed a root canal last month.
She bruises easily and the scars from previous surgeries have spread very wide and are purple.
She has had a life long weight problem even though she has been low on calories. Over the last 12 years she has lost about 130 lb. She has had a lifelong problem with constipation. She now has a lot of hanging skin and vericose veins.
The present surgeon after seeing the kind of instability she has suggested there might be a genetic link but did not say what yet. Surgery was just day before yesterday.
There has been no diagnosis to date of EDS. What steps should we take from here? She has been regularly exercising but I am questioning some of her diet practices on bone health. Soda pop, artificial anything that will make something taste better without calories,