inflammatory orbital inflammation

[AnnaBav]

Hi!
We are looking for a doctor that can help my dad. He is diagnosed with inflammatory orbital inflammation - and he is in the pain very much ((. His doctor is very nice but she gives up on him - she just doesn't know what to do anymore. She wrote a letter which I cut and paste below:
If someone know a doctor that is an expert and can help us - please please email me: ***@****.
currently my dad is visiting us (he lives in Israel) and we're located in NJ
Thank you.

February 06, 2007
To whom it may concern
I know Mr. S.L. since March 2005,  when he first presented to the emergency room because of 1t orbital pain, 1t proptosis, chemosis and diplopia. Per history: hypertension, diabetes mellitus, IHD, S/P bilateral carotid endarterecomy. He was hospitalized for work-up and treatment. CT scan of the orbit showed apical mass in the 1t orbit, that extended anteriorly, inferomedialy into the extraconal space. There was no bone destruction ( and even some hyperostosis of the orbital flour).
There was some condensation in the roof of the maxillary sinus on that side and the ENT took a biopsy of the sinus, as the mass in the orbit was too posterior. The biopsy showed some inflammatory cells with no other findings. Bone marrow biopsy showed no evidence of bone marrow involvement by lymphoproliferative disorder. Many blood tests to rule out sarcoidosis, wegeners granulomatosis and other vascular diseases were negative. Bence Jones proteins in the urinr were negative. S. was treated with ...

[Michael J Kutryb, MD]

Suggest  you visit Wills Eye Hospital in Philadelphia, PA.  Oculoplastic  and Orbital Diseases Department.  
THat would be a very good start.

MJK MD

[AnnaBav]

prednisone PO with rapid and good response itn terms of pain, chemosis and proptosis. The limitation in upgaze improved but persisted. During steroid taper the symptoms and signs recurred and therefore on august 2005 he was sent to orbital biopsy, that was performed in Jerusalem. This biopsy was under steroid treatment, as it was impossible to stop it: he developed compressive optic neuropathy and the disc became swollen each time the steroids were reduced under 20 mg/d. The histopathological diagnosis was: adipoase and fibrous tissue.
Because of the steroid dependency he received low dose radiation therapy (January 2006) with no favorable result. Total body CT was normal except some findings in one of his kidneys – as I remember – that was not correlated with an kidney US that was performed later ( he didn’t bring me all of his papers, but as I remember he made total body CT twice). Later, on April 2006 he underwent a second orbital biopsy, and again it was not contributory to the diagnosis: it showed only inflammatory cells.
On that point we started steroid sparing therapy: Imuran in the beginning, and now because of possible side effects to Imuran he receives MTX 15 mg/week + prednisone 7.5 mg/d. His visual acuity in the lt eye is 6/9, he has +2 RAPD ih his lt eye with concentric restriction in the left visual field and color desaturation. His right eye is normal.
During the last year he suffers from proteinuria in nephritic levels (up to 4 gr per day) and I know that the nephrologists are afraid of kidney biopsy (even though he doesn’t have diabetic retinopathy so it’s hard to blame the DM..) he was sent to a dermatologist first to try to make a skin biopsy and spare the kidney biopsy but then he had MI that was followed by pneumonia and his general health deteriorated.
My working diagnosis is still chronic idiopathic inflammatory orbital inflammation, though the orbital mass keeps on growing (last MRI was done on December 2006) and its edge centers the cavernous sinus. I believe the pathologic core of the lesion was not reached in the two orbital biopsies that were performed because it is too posterior in the orbit.
I will be glad to have some advice on that patient.
Dr. J.H.
Israel