Thank you for your input. Your story confirms my feeling that there are other treatments out there other than waiting for a total wrist fusion. I have an appointment with another hand specialist next month so hopefully I can get some answers.
I couldn't have said it better myself. In addition, I agree that a second opinion with another hand specialist could never hurt.
I was diagnosed with Preiser's disease 2 years ago. After seeing a hand specialist for 6 months who did nothing but give me steroid injections, I decided to get another opinion. The second hand specialist felt I had arthritis and had me start physical therapy to see if it would help. He also had me get an MRI after a month of therapy, which showed a necrotic scaphoid - Preiser's disease. He talked about several options, but said since it is so rare, he wanted to go with the most conservative approach. I was put in a short arm cast for 12 weeks, then basically just wait. The hope is that the scaphoid will revascularize on its own. He also urged me to go to a rheumatologist, which I did, and was also diagnosed with psoriatic arthritis which is related to RA, but has more destruction of the bones at the joints. I am now about to have another MRI with contrast to see if there has been any change. I'm not sure if we will wait longer if there is no change, or if he will decide on another plan. He did say, back when I was diagnosed, that there are 2 options for surgical treatment. The first, which he seemed to favor, is a vascularized bone graft. This is done if the outer surface of the scaphoid is still in good shape. The other option is a proximal row carpectomy, where the row of small bones of the hand which are closest to the wrist are removed. There is apparently good results with this procedure, which is used to treat several types of issues. There is also fusion of the wrist, which I think is avoided for younger, more active patients because it gives very limited mobility. There are certainly more than 1 treatment option out there for you, so at your age, I would take a cautious approach, and get another opinion from someone who has seen and treated Preiser's before. Unless you have a collapse of the bone happening, there is no need to rush into any procedure. Take it slowly and follow your instincts!