Preiser's Disease treatment options

[ktez]

Back in July of 2010 I fell on my right wrist and also twisted it as I was falling.  I went to my primary care doctor, and initial xrays did not show anything.  She sent me to and orthopedic surgeon, and suspecting a scaphoid fracture he put me in a splint for 6 weeks.  I also had a CT scan and an MRI, which were inconclusive, only showing bone contusions and some arthritic changes in the scaphoid bone,as well as several bone cysts.  After the 6 weeks with no changes, he figured it was arthritis and referred me to a rheumatologist.  She concluded that it was not RA, and suggested I see an orthopedic surgeon who specialized in upper extremities.  In December I saw a orthopedic hand specialist, who wanted me to have another MRI since the first one had been done in August.  I finally was able to schedule the MRI last week (April 22, 2011), which was a regular MRI followed by a MRI after contrast dye was injected into my wrist joint.  I saw the hand specialist today to follow up on the MRI results, and he diagnosed Preiser's disease caused by the initial trauma.  He said the scaphoid bone is not completely dead yet, but has limited blood supply.  His recommendation was to come back in 2 months and see if anything has changed.  He said there is really nothing that can be done until the scaphoid dies and collapses, at which point he would perform a fusion.  I' wondering if this sounds right? From what I have read, there are other options and the sooner it is treated the better.  I am a 39 year old female in good shape, and I currently work in a factory doing assembly.  I have very limited range of motion in my wrist, and almost constant pain.  It feels better sometimes when I wear a brace, but that is not always practical.  I have trouble with even simple activities due to the pain, such as getting dressed, brushing my teeth, and even typing and writing.  I can't even throw a ball to my son.  Do you have any suggestions or advice?  

[ktez]

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.

[Michael L Gross, MD]

I couldn't have said it better myself. In addition, I agree that a second opinion with another hand specialist could never hurt.

[rosieo1212]

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!