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  • 1.  Persistent (chronic) papilledema in IIH

    Posted 8 days ago

    Hi everyone and happy Easter (and Passover)!

    I am putting together a talk for a course at the American Academy of Neurology meeting (I know, my slides are late) and wanted to present a case of a patient with persistent, mild disc edema after otherwise being in remission for IIH. This has been attributed to RNFL glioisis but – to my surprise - I can't find anything in the literature to support that this happens and the mechanism.  There are some OCT data from the IIHTT but the papers point out that there is no definite correlation between OCT measurements and papilledema grade later in the time course.

    Does anyone know of a reference that they can point me to?

    Feel free to reply privately if you prefer DeborahFriedman@tx.rr.com

    Thank you!

    Deb

     



  • 2.  RE: Persistent (chronic) papilledema in IIH

    Posted 8 days ago
    Indeed, a finding not well described.
    Have a look at this paper showing an example:
    https://pubmed.ncbi.nlm.nih.gov/25295682/

    Best,
    Berthold





  • 3.  RE: Persistent (chronic) papilledema in IIH

    Posted 8 days ago
    I have a patient lady like that who hs this gliotic elevated disc appearance for years and her visual field will show persistent enlarged blind spots. Initialy presented with papilledema and was treated with Diamox and then switched to Topamax 50 mg/day and I have been following her for years now. At At one point she she saw a neurosurgeon who told to stop the medication and and sh had increased papilledem and RNFLT and with resttarting reverted to this gliotic appearing discs. Attached the OCT red-free photo.

    RB




  • 4.  RE: Persistent (chronic) papilledema in IIH

    Posted 7 days ago
    Happy Easter 
    Gliotic discs after papilledema are not uncommon after papilledema and may represent a diagnostic dilemma in recurrent cases , after resolution of the disease they may turn a true papilledema into pseudopapilledema with the disc frozen to a certain shape and degree of elevation that may be there forever and with the recurrent nature of the disease and with a second and third attack will not reflect the changes in the ICP or the subarachnoid pressure of the optic nerve
    OCT although may give some wonderful imaging portraits may not even solve the problem for different factors cause a disc that suffered papilledema may have affected RNFL thickness after the disease but with recurrence the RNFL who's actually thickened from their affected state will come to a false normal value and this is misleading except if you have a reference or sequential examination on the RNFL
    For the gliosis itself it is looked at as a clinical diagnosis but there are no studies to my knowledge that tried to measure the veil in front of the disc and changes that happens over time but all directed to studying the progression and regression of papilledema or the differentiation between papilledema and ODD or between ODD and PHOMS as were presented in the last conference in Tuscon.
    So it is a very good idea for a new research using OCT specifically to measure the gliosis as an epiretinal or epi-papillary membrane and if changes over time in the same patient and it would be fascinating to study that in primary and recurrent cases in the same patient 
    I have a question or suggestion for you Deb if you can retrospectively reanalyse date for those patients if you have older scan for some of your patients 
    One last thing about the reference is the papilledema chapter written by Neil miller and Nancy Newman in Walsh and Hoyet in the 4th edition I think may contain some references about this area but I think will not be recent 





  • 5.  RE: Persistent (chronic) papilledema in IIH

    Posted 7 days ago

    I have many of these patients too -- post-papilledema patients with a persistent low-grade elevated appearance to their optic discs.  I've LPed some of these patients over the years and usually just find normal ICP.  

    I wonder these patients really all have 'gliosis', though...  That sounds like a histopathological diagnosis.  Not sure what past autopsy studies may have shown, or how the idea of 'gliosis' arose, but the B-scan OCTs in these (living) patients don't usually show the hyperreflectivity that you might expect with a scarring-sort of gliotic reaction. 

    My hunch is that the persistent elevation is just a sort of distortion of peripapillary tissues more than anything.  When I try to explain the situation to patients, I usually compare the optic disc (and peripapillary tissue) to a balloon: once you inflate it, it never deflates back exactly to its original shape.

    Alex