Hello!~
Well my mother has rsd, since 2005. Well my recent post i was stating that she was going to see Ophthlamologist. Well that dr seen her, and he told her it was all in the back of her eyes (was just one , now its both). He delt with the front of the eye. She told this dr. that she was seeing a neuro-surgeon for the past 4 months, and was prescribed drops for her eyes. Well she told this dr, that the neuro-surgeon told her first she had 1. an angry eye and then 2. arthritis in the eyes, he said in all his yrs of practicing he has never heard of anything of that nature. He told my mother that is she would have come to see him when this started she wouldnt be in the state she is in now. So last week he made an apt for her to go to John Hopkins to the (neuro-Ophthalmology/Orbit Unit) ASAP. He did test her eye sight and she has tunnel vision, and from the photos of her eyes from the tests she cant see ****, ( putting it bluntly). So this thursday she goes to JH, and i hope and pray they can help her out. This dr did tell her what she has its called (Papilledema ). I have done some research on this and not much out there for a cure. So today my father called wanting my mothers information from the dr she had been seeing for 4 months, and the receptionist was like " well i can have u sign a release paper and then in the next week or so you can have the records". My father said that he was cancelling her dr apt for there for the second time, and they wanted to know why, and my father told them her PCP wanted a second opinion and she has ( papilledema) and is going to JH. My father said i never seen a receptionist back track herself so quickly,she told him if the dr at JH calls we can fax her information ( how convient huh). My dad and i were talking, and if this dr, she seen for 4 months diagnoised her and give her drops that werent going to help her and make her worse, she could sue him. Who knows what will happen. I just know that its getting worse- as ive been over at her place 4 out of the 5 days a week, cleaning- making sure everything is done, my father would but he has to work during the week and wknds he takes over. If i could give my mother my eyes i would and go blind the rest of my life, than to see her stumbling and feeling horriable day after day. Things happen for a reason and gosh darnit, i dont know this reason ..nore will i ever.... And as my grandmother says, god doesn't give us anything we can't handle... RIGHT? right!~ on that nice note, until next time....
Christina

don't give up hope-
my mother was totally blind for a few months and lost total vision in one eye but after a few years they found a dr that made a special contact lens for her, she can now see with the one low vision eye.
Her disease caused excessive scarring in the cornea, immune diseases, and non functioning tear glands , plus a lot more other stuff.

She didn't have RSD though but 2 other rare conditions that nearly killed her.

She contacted some low vision resources and got lessons on how to use the cane, books on tape & with the player, things like that.

That might be a positive thing to do while waiting on the drs and appts -to help her to learn the skills on how to cope as non visual person- even if it may be only temporary.

more info links-
Refine results for Papilledema:Treatment Tests/diagnosis For patients From medical authorities Symptoms Causes/risk factors For health professionals Alternative medicine Papilledema - Wikipedia, the free encyclopedia

Papilledema (or papilloedema) is optic disc swelling that is caused by increased intracranial pressure. The swelling is usually bilateral and can occur over ...
en.wikipedia.org/wiki/Papilledema - 43k - Cached - Similar pages
eMedicine - Papilledema : Article by Joseph Giovannini, MD

Papilledema - Papilledema is an optic disc swelling that is secondary to elevated intracranial pressure. In contrast to other causes of optic disc swelling, ...
www.emedicine.com/OPH/topic187.htm - 70k - Cached - Similar pages
Papilledema

Papilledema is a swelling of the optic nerve, at the point where this nerve joins the eye, that is caused by an increase in fluid pressure within the skull ...
www.healthatoz.com/.../Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/papilledema.jsp - 49k - Cached - Similar pages
Handbook of Ocular Disease Management - OPTIC DISC EDEMA & PAPILLEDEMA

Papilledema, a specific form of disc edema resulting from elevated intracranial pressure, generally exhibits a minimal acuity deficit, but may demonstrate ...
www.revoptom.com/handbook/sect6b.htm - 10k - Cached - Similar pages
Eye Conditions > Papilledema -- EyeMDLink.com

Papilledema is a term that indicates a swollen optic nerve due to increased intracranial pressure. Papilledema is not a diagnosis, but rather a sign of an ...
www.eyemdlink.com/Condition.asp?ConditionID=340 - 25k - Cached - Similar pages
InteliHealth:

Papilledema is the swelling of the optic nerve as it enters the back of the eye. When you have a headache or unexplained nausea and vomiting, ...
www.intelihealth.com/IH/ihtIH/WSIHW000/9339/10463.html - 49k - Cached - Similar pages
Papilledema: Optic Nerve Disorders: Merck Manual Home Edition

Papilledema is a condition in which increased pressure in or around the brain causes the optic nerve to swell where it enters the eye. ...
www.merck.com/mmhe/sec20/ch235/ch235b.html - 47k - Cached - Similar pages
Papilledema: Optic Nerve Disorders: Merck Manual Professional

Papilledema is swelling of the optic disk due to increased intracranial pressure. All other causes of optic disk swelling, such as that due to malignant ...
www.merck.com/mmpe/sec09/ch107/ch107e.html - 52k - Cached - Similar pages
Pseudotumor cerebri

The second has Papilledema. Note the blurred disk margins, swelling, ... Papilledema is the swelling of the Optic Nerve as it enters the back of the eye. ...
groups.msn.com/pseudotumorcerebri/papilledema.msnw - 42k - Cached - Similar pages
Papilledema definition - Medical Dictionary definitions of popular ...

Papilledema: Swelling of the head of the optic nerve, a sign of increased intracranial pressure. The optic nerve head, also called the optic disk or papilla ...
www.medterms.com/script/main/art.asp?articlekey=4757 - 37k -Cached - Similar pages


and more-
http://www.google.com/search?q=Papil...ient=firefox-a

I am so sorry for your Mom....we do the best we can so stop blaming yourself ok???....... I am hoping that JH doctors can help.

A warning to all others, if you are having eye trouble of any kind........go see an OPTHAMOLOGIST not a neurologist, nor your PCP, nor an optometrist (all these do is prescribe eye glasses/contacts). Altho they atleast usually will refer you to an Opthamologist. They are the MD of eyes. And if you need more than they can do for you, they will send you to whomever they deem will be of help.

I swear by my Opthamologist. She has helped my eyes soooooooooooooo much.

DebbyV

My 14-year-old son has papilledema. He said it was as if he had black binoculars in his line of vision, a ring in each eye. At night he said they were a flaming ring of fire. Two ophthamologists confirmed the dx, and the neurologist did an LP to relieve the pressure and it's not completely gone, but very much better. He lost some vision, but we caught it in time.

Your mother's vision could improve if they can treat it in time. I understand the anger. It's so hard to handle all the stress and to see your loved one suffer. Some doctors should be.

I don't know anything about RSD, but hang in there. Bless your heart.