Question: Hi, my mother (52y, 180lbs, 5"00) had a sudden onset of vision loss on Nov 19, after almost 6 months of little blackouts lasting less than 15sec that were misdiagnosed. Actually the vision loss happened after her neurologist put her on Corticoids Iv submedrol 360mg for 3 days folowed with oral cortancyl and lyrica. He thought it was MS.
After the severe vision losswhich left her now at 20/60 and shecant even walk in the house coz she dont see well, we went to the ER. They kept her for days and after all big exams: mri, x-ray, ct scan, blood checks that all went back normal, theydid and LP and the pressure was at 30. They then diagnosed her an idiopathic intracranial pressure (PTC).
Her left eye doest react to light perception and she doesnt really see with it, she cant count fingers but can tell if smthg is moving in front of that eye.
At the hospital, i heard the doctor while checking her eyes discussing if it was 2 or 4 and finally agreed 2. It is only later after researching that i realized it was about the grading size of her papilledema). I dont know which eye it was about tho.
They put her then on Diamox 2000mg a day since Dec 7th. Besides the vision loss, shehas no ither symptom, no pain, nothing. Maybe just that chronic dry cough that might be due to the Ramipril (tetrazide 10-12.5mg) she takes for her high blood pressure.
Since then she hasnt really have any improvement of her sight. She is doing fine with the diamox, the side effects are not really bothering and she drinks plenty of water. She just noticed that since 2 days, her vision has become very very blurry, a thick white veil that replaced the dark veil she used to have. This blurred vision has even limited the minimal vision she used to have. However, she is no more sensitive to light, no more photophobia. We have a follow up appointment on Dec 20.
My questions are:
1- Do you think Diamox is the right treatment for her ? If yes, is this dosage appropriate?
2- How does it usually take to see the good effects of diamox?
3- Do you think at this stage were optic nerve has been swelling for a long time, a surgery such as an optic nerve sheath fenestration in more indicated to save her vision?
4- Do you think she has good chances to recover her vision one day?

What should we do now?
Thank you very much. I am soooo worried for my mom vision.
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Thank you very much for replying. She takes Diamox 500mg 4 times a day for 14 days to begin. The doctors said looking at her optic nerves, they can see the swelling is old, but they cannot assess the damage. They want to do another LP next week coz they said the pressure they got last time is borderline at 30 and wasnt done at the right position.
They raised the possibility of a shunt, but im too afraid of the risks (infections, failure rate). I ask about an optic nerve sheath fenestration and they said it is not a safe and widely done surgery and this hospital doesnt do it. And yet i think this might really help her, especially on her bad eye, the left one.

They gave her Liposic tonight to help with the blurry vision coz they said her eyes are too dry. Not sure, i dont want her to hope too high.

By the way, the mri she did, even tho they said normal, also noticed some lesions of the white matter. The radiology said "possibility of some atrophy", but the neuro-ophtalmology team said they cant say if there is any permanent damage.

Please doctor, Do you think after 14 days on Diamox doctors will be able to assess the damage on her optic nerves and maybe she can also see some positive difference?

Thank you very much again doctor. I hope so much that there is no atrophy. Im so worry for my mom. Thanks a lot
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Thanks very much Doctor for replying.
So about the shunt, which one is better? The LP or the VP shunt? This in terms of less infections risks, vision improvement and failure rate, as well as comfort in a day to day life? Since or hospital doesnt do optic nerve fenestration, they told me the only possible surgery could be shunts, but only after another measure of her pression.

If she does have intracranial pressure, can she travel by airplane on flight of more than 7 hours?

Last question, what do you think of companies that offer stem cells therapy for optic nerve atrophy? I heard about China and India.

Thank you very much again and have a wonderful weekend

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Thank you very much Doctor. Please, I have a question again.

I met with my mother's doctor today and they said all her visual tests are contradictory. They said beside the swelling optic nerve, her eyes are okay, the 2 pupils react to light even tho she doesnt see light with her left eye. They said with the kind of swelling nerve she has, she shouldnt have that much vision loss. They cannot really say there is permanent damage in her optic nerve as there is no bleeding, and the presence of fluid in the nerve doesnt really support the idea of an atrophy they said.
They did her an OKN test (optokinetic nygtamus) to her left eye and she can tell something is moving and the direction. They said for an eye that has no light perception, it is not normal. They believe she sees more than she thinks and should be able to see more. They asked us if she is under stress or depression and suggest she should maybe talk to a phycho therapist.

I want to ask them to confirm her intracranial pressure as the first fluoroscopic spinal tap was done laying on her stomach and not on the side.

Please Doctor, does this make sense to you? How can she have an actual optic nerve swelling and still, they think she should see and the problem is in her head? How can this be possible? How can she then recover her normal vision?

Thank you very much Doctor
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