Chicago Specialist...

[gwaugh]

Mike has suggested that I contact Dr. Goldstein in Chicago---And Mike, Thank you for your reply!! I am posting here as a reply to your message as well to all others.

Anyway, do you, mike, or any others have any experience / knowledge of Dr. Norbert Becker in Geneva, Illinois? He is just down the road from me. Chicago is not unobtainable, but would involve days of from work, etc., whereas I can got to Geneve (IL!) on any day.

TIA, Gene

[Mike Bartolatz]

sorry but Ocular Immunologists are few and far Between. the absolute closest true uveitis specialist to you is Dr Goldstein. Many individuals travel hundreds if not thousands of miles to see one of these very rare specialists. Uveitis, if not controlled or put into remission can lead to damage of structures within the eye. Uveitis is the third leading cause of preventable blindness in the USA. complications such as cataract and glaucoma are fairly common with recurrent and chronic uveitis. So is cystoid Macular edema, retinal detachment and epiretinal membranes. some people get vascularization of the retina. some get vascularization of the iris. Many opthalmologists take a 'wait and see' position which doesn't effect them but it definitely can effect the patient. some allow vision to deteriorate to a 20/40 vision level before they will treat. informaton available at this site will indicate that thinking like that is obsolete. the sooner the iritis is controlled and steps are taken to get you to remission the less likely you are to lose substantial vision. travel to chicago is an inconvienence but it is the only way you can help to prevent this type of loss. I too have to travel when my uveitis flares up. I was only treated when in major flare and the slow burn has caused me problems of Cataract, elevated IOP that damaged my peripheral vision, cystoid macular edema and epiretinal membranes. sure there is surgery for many of these things but why go to that extreme before considering alternative therapy proven to be effective at major teaching hospitals here in the USA. Surgery is TRAUMA and trauma can also cause uveitis. there is the added risk of introducing a pathogen into your eye as well and the hospital setting has more drug resistent pathogens than in your house. the human lens works mechanically and an intra ocular lens is fixed so it cannot adjust. Glaucoma can be a result of the steroids or from the disease process. often surgery is required to get the pressure down with implantaton of a valve. epiretinal membranes can be removed but the surgery is like trying to remove scotch tape from the surface of a grape - extremely difficult. retinal detachment can occur too. yes laser surgery can sometimes successfully attach the retina but it can also lead to blind spots. to me it makes more sense to try a modern approach to this stuff which is NOT available with just a local opthalmologist or retina specialist. they just don't have the time or education to employ immunomodulation etc to get you to remission.

wish you the best,
Mike

[Paul31728]

yes laser surgery can sometimes successfully attach the retina but it can also lead to blind spots.

All this crazy talk about "successfully".....it's insane...

[Guest]

just wondering where this original thread on "dr. goldstein" is.

My father has iritis, i'm not sure what kind, but supposedly it is quite severe. He will be in town for a few days next month, and I'd love to take him out to see an eye doctor specialist.

any contact information? thanks

[effang]

just wondering where this original thread on "dr. goldstein" is.

My father has iritis, i'm not sure what kind, but supposedly it is quite severe. He will be in town for a few days next month, and I'd love to take him out to see an eye doctor specialist.

any contact information? thanks

Yes, this would be greatly appreciated. Also, on your stick thread, there are multiple specialists mentioned in the Chicago area. Is there a reason that Dr. Goldstein is mentioned in particular in this thread? Or is this due to the fact that there has been personal experience with this doctor.

thanks

[Mike Bartolatz]

Dr Goldstein is a Professor at the University of Chicago Medical School and teaches Ocular Immunology. she is the Leading authority in Illinois. Dr Tessler is also a Professor there and is exceptional as well. Both of these doctors are Highly recommended by patients as well as by collegues within the American Uveitis Society.

mike

[Fretmaster35]

FYI, Debra Goldstein's office may be reached by dialing 312-996-0615. She is at University of Ililnois at Chicago. After a particularly bad episode of iritis, my sister found her name on this website. I had difficulty finding her, but got lucky after a few phone calls and a knowledgable receptionist at University of Chicago gave me her phone number.

I am a 49 year old woman and was diagnosed as HLA B27 about 12 years ago after a bout with iritis. For the most part, I've had fairly mild episodes treated with predforte and homatropine drops only until this past May. In mid May I had a severe episode and was prescribed predforte drops every two hours, homatropine 4 times a day and 80 mg. of prednisone orally each day. An associate of my regular ophthalmoligist gave me two injections of steroids in the eye and told me to discontinue the predforte drops and to decrease the prednisone taken orally by 20 mgs. each day - . - discontinuing totally after five days. I had a hunch he was taking me off the oral steroids too quickly, but didn't know anything about the steroid injections, their effects and interactions with other drugs,, so I just went with what he told me to do. This happened on a Monday. By Wednesday of that week, I started to flare again. By Friday I was in excrutiating pain. My iris was jagged. My regular ophthalmologist restored the 80 mg of prednisone daily and predforte drops and saw me every day for a week. The flare started to slowly recede only after 3 days of the restored regimen.

He suggested I see a specialist to determine if I had any other immune system problem (in addition to the HLA B27) that exacerbated this episode. Thanks to my sister, I saw Dr. Goldstein. Both Dr. Goldstein and Dr. Tessler examined me along with a host of residents. I brought all my ophthalmology records along with me as well as recent blood panel results that my primary care doc had ordered which they found useful.

They determined that it was not likely that I had any other immune system pathology; instead they suggested (after some prompting by me) that the episode was caused by having pulled back the steroids too quickly. I was told that I cannot expect to regain my vision totally and will have to live with the numerous floaters and veil I now see.

I had suspected that this epsisode was aggravated by steroid rebound, but no one was willing to admit this. I had a gut feeling that the opthalmologist associate I saw was pulling me off the steroids too quickly, but didn't act on my hunch unitl too late.

I am now on 4 drops of predforte a day and am sloooowwly tapering off the oral steroids over a 6 week period (after a 21 pound weight gain and considerable side effects). I still have a half cell inflamation and am hoping that I am not kept on the predforte for too much longer as I have now started to develop cataracts. One valuable thing I learned from Dr. Goldstein is that generic predforte is not as effective as predforte and to ask your pharmacy to NOT give you the generic.

The moral of the story is to follow up on your hunches, ask a lot of questions, and to seek out a specialist. I recommend Drs. Goldstein and Tessler to anyone. They gave me a lot of info. I did not previously have and outlined several possible strategies for future episodes.