Swollen optic nerves - both sides

[Jane424]

Has anyone had swollen optic nerves? I noticed a misty area in my left eye. My optometrist sent me straight to ER. My spinal fluid level is good - 16. 2 CT scans were negative, MRI showed nothing relevant. I do not have headaches or other symptoms. Except my eyes feel full. They think not GCA. Another MRI ahead looking to see if the swelling is just n the eyes or goes back into the brain. Throughout, they have been looking for myeloma as I have it. However, my blood results are the best yet - IgM 6.2

I have had PMR for 18 months and am currently on 6.5 prednisone.

Has anyone had anything similar? Or can you throw any light on it? The only coincidental thing is I had an accident and fractured my sacrum immediately before my vision changed. It was a fall straight on my bum so shock up my spine. Many thanks, Jane 🌼

[cranberryt]

I have a condition called pseudotumor cerebri (aka. ideopathic intracranial hypertension). It is swelling of the optic nerves caused by excess spinal fluid at the base of the brain where it meets the spine. I had this years before my PMR dx. For most, it causes headaches and vision issues. Mine never caused headaches but it was changes to my vision that caused me to get checked out. I couldn’t tolerate the treatment and it is stable so I live with it. Since you had a spinal injury I wonder if it could be a similar issue… increased spinal fluid putting pressure on the optic nerves? The test for it was an MRI to rule out tumors and then a spinal tap to measure fluid pressure.

[Jane424 in reply to cranberryt]

Thanks so much. I had a spinal tap last week and my pressure was 16. They start worrying at 20. They are analyzing the spinal fluid, but for cancer cells. The first CT was for fluid n the brain, clots and tumours. The second for minute clots as myeloma, which I have, tends to clotting. The MRI was myeloma in the brain. The next MRI to check if the swelling is just my eyes or goes into the brain. Bless you for taking the time. Jane 🌼

[cranberryt in reply to Jane424]

It sounds like they are being thorough. How you get answers soon!!

[PMRpro Ambassador]

AION is a symptom of various things - not just GCA

my.clevelandclinic.org/heal....

But as cranberry says - that spinal injury may be significant. The vertical pressure wave can cause all sorts of things it seems! I wonder if it was a transient thing that then started to resolve by the time they looked?

[Jane424 in reply to PMRpro]

Thanks. No, not transient as later photos have shown the optical swelling still there, but good idea.. I have told them several times about the spinal injury, but they have dismissed it. Both the neurologist and Ophthalmologist have said they can’t understand what is going on. I asked this group in case there's something PMR related they haven’t thought of. They seem fixated on myeloma though I have been stable for three years and my blood work is excellent. All scans etc for myeloma have been negative too. Many thanks, Jane🌼

[FabricArt]

I would urge them to eliminate cranberryt’s own diagnosis. My granddaughter has it…. Idiopathic pseudo cranial tumor. Acts like a brain tumor, but isn’t. It is rare, so docs might miss it. Just ask them to eliminate it as a cause. And good luck with both! I cannot imagine cranberryt’s experience!

[Jane424 in reply to FabricArt]

Thanks so much. I have PCOS, one of the linked illnesses, so will definitely query. Checked Mayo site and they seem to have done correct tests. Will query. Bless you, Jane 🌼