[Pibe-division] would someone on aernet forward this meassage to members on this listserv regarding rop and complications

[Sara Rooz]

Hi Everyone:
A while back I inquired about ophthal,ologists who understood ROP and its complications glaucoma and phthisis bulbi shrunken eye. Many individuals had suggetions and would like to thank the people that responded. Just to give a brief synopsis about myself. I am blind due to ROP and have had a history of glaucoma from age 8. The glaucoma has cone on infreqently as a child teenager and adult. Threee months ago, I felt the same presuure, and contacted the ophthal,ologist I usually see but was told that this individual saw onoy pediatric patients not adults. I then went to the emergency room at the new york eye and ear infirmary and was told that my eyes were shrinking and was prescribed saline dros for dryness and an ointment. I then had an appointment with an ophthal,ologist at the eye institute who told I had phthisis bulbi which means my eyes were shrinking and prescribed me two drops to deal with the paina and was told to come back ina month. The person did indicate that enuleation is suggested if drops don't help. I then asked suggestions from the aernet listserv and I think this one and were suggested ophthal,p;pgists. In May, I went to Cornell and saw a specialist who dealt with ROP who told me the same diagnosis and suggested for me to see an occuplast to consider putting a prosthetic eye over each eye and continue taking the drops. AFter doing much research, I found out that my ophthal,ologist did see adult patients and made an appointment wit his associate DR. Mars, June 1. 2011. I saw always Dr. Abramson. I was told today that because I had a history of glaucoma the oressure became very high and so the circulation in thboth eyes were poor and the pressure dropped and the pain was caused because the eyes were shrinking. This diagnosis is phthisis bulbi. I was given a different drop to deal with the pain and an ointment to deal with pain from the outer surface of the eye. I was also told that many ophthal,ologists do not understand ROP and it s complications. The ophthal,p;pgist did not suggest putting prosthetic over the eyes and indicated that enucleation of the eyes was the last resort if the pain became wo severe. I am so relieved that I managed to see an associate oof the ophthal,p.ogist I havew been seeing. I would just caution vision teachers to make sure that they know there students eye conditions and make sure that they see an ophthal,p;pgist that inderstands the specifiic eye condition and complications. I will only just say from Aril through June was quite a nightmare for me to go from one ophthal,ologist to another untl I saw an associate of the ophtal,p;pgist I usually se. My ophthal,ologist was on vacation for a few weeks. I am writing to thank everyone for there help and suggestions and hope my experience does encourage all vision professionals to make sure that students or clients see the ophthal,ologist that understands their eye conditgion. I am a vision teacher myself and work with 14 students who have additional disabilities in addition to being blind or visually impaired. I did teach braille to a child last year and would be open to doin g so next year if I am contactd about providing vision services. I work as an independent related service prpoviding providing vision eduction services in new york city. I am grateful to Do,inican college for the training I received asa certified TVI and that I am using my skills and gainfully employed, considering that blind people have a seventy percent unemployment rate. Thanks for all the assistance and if anyone could forward my message to aernet it would be greatly appreciated since I an mo longer a member of the listserv.
Sara Rooz TVI in NYC
Independent Related Service Provider Vision Education Services in New York City
-------------- next part --------------
An HTML attachment was scrubbed...
URL: <http://nfbnet.org/pipermail/pibe-division_nfbnet.org/attachments/20110601/a97aab17/attachment.html>