Preiser's disease 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

[Latinaphoenix]

If you live in the United States I have two words of advice.  1. Go see if Dr. Green is still practicing if not 2. leave the country for treatment.  The United States has not approved many treatment options for this disease whereas other legitimate countries have i.e. Spain or Panama.  

I was diagnosed with this disease at 17 after seeing specialists who told me it was in my head or that I was just seeking drugs because they refused to do the MRIs that your doctor luckily ordered.  My PCP had referred me to a hand specialist that was local to our Texas area that made the unhelpful assessments & subjected me to carpal tunnel treatments that likely exacerbated the issue.  Thankfully my PCP new Dr Green who was still practicing (10 years ago) and got me an appointment with him after I complained to him about the specialist's behavior.  I am regretful only that I waited 6 months to report this to my PCP but was young & figured maybe I just needed to suck it up & give the therapy a chance.  
At this time Dr Green did tell me there where not many options in America since the US has to run X amount of trials of any given solution & with the rates being so low it hadn't been accomplished.  Being a dual citizen I was able to easily leave the country and confidently pursue options in Latin America where I finally found some relief.  
Panama has a large expatriate community which makes it easy for US Citizens to find competent English speaking doctors.  I would recommend Dr Jaen at Clinica Dayan.  

[achilles2]

Did he tell you what stage of the disease you have? I found this on the internet it might help--

http://www.eorif.com/WristHand/Preisers.html

I hope you get what you need,

achilles2