I was diagnosed with PTC and papilledema recently, how serious are these conditi!


Question: I saw the neurologist first and he referred me to the opthamologist. The opthamologist confirmed the diagnosis of papilledema. I have read about both conditions, but the information is rather vague. How serious is papilledema? Will I lose my sight all together?


Answers: I saw the neurologist first and he referred me to the opthamologist. The opthamologist confirmed the diagnosis of papilledema. I have read about both conditions, but the information is rather vague. How serious is papilledema? Will I lose my sight all together?

They have the potential to be very serious, but PTC affects individuals very variably, so there is absolutely no need to take "worst case" instances as inevitably applying to you.

Will you lose your eyesight altogether? It's unlikely, but it is possible. More likely, but not assured, is that if your intracranial pressure is brought down, your vision will improve, including recovery of peripheral vision loss.
(to an unpredictable extent: a lot will depend on how long the condition has been present, undiagnosed.)

I'm sorry there are so many unknowns, including where the disease actually comes from.
"Idiopathic" sounds like a technical term.
It is. It's the technical term for "we don't know, it just sort of happens."

Of the sites I looked at, this one, to my mind, seems both clear and comprehensive:

Your question asks more questions than one. To get a clue, age, race, sex, etc., other diseases, family history, any suggested Rx, if any. Maybe you could give a little more information. Any diagnostic studies or labs or MRI or x-rays? Is this pseudopapilledema? Are you myopic, hyperopic?

Kind of need to help with enough information to give you an idea what's going on or what the possible diagnoses could be.

Papilledema means that the optic nerve is swollen. This can have a number of causes, one cause is increased spinal fluid pressure due to a brain tumour. In pseudotumour cerebri, you have all the symptoms of a brain tumour including increased spinal fluid pressure but don't have a brain tumour.

The ophtho didn't say you had pseudopapilledema because you actually do have a swollen optic nerve, what is pseudo is the tumour, not the papilledema.

Pseudotumour is usually treated with oral medication and treatment is effective. You may have some minor effects after treatment but vision should return to normal. In the future, you should be alert for recurrances of symptoms of PTC so that treatment can be quickly started. Early treatment is needed to prevent permanent damage to the optic nerve.





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