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Steroids in fulminant IIH

  • 1.  Steroids in fulminant IIH

    Posted 08-11-2025 20:17

    Hello all,

    Is there a role in using IV Steroids in fulminant IIH in parallel with surgical options and Diamox? Would like to hear about your experience

    Thanks,

    Shruthi Harish



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  • 2.  RE: Steroids in fulminant IIH

    Posted 08-11-2025 21:56
    What is fulminant IIH? in severe endstage papilledema I have used IV steroids and IV Diamox pending surgical intervention. But the surgical intervention should be an emergency.

    Peter.
    Sent from my iPhone





  • 3.  RE: Steroids in fulminant IIH

    Posted 08-11-2025 22:00

    I have done it multiple times with great success.  Sometimes have even had sufficient response where surgery was no longer needed urgently 


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  • 4.  RE: Steroids in fulminant IIH

    Posted 08-11-2025 22:10
    Hi what is the opening pressure?
    VF?
    CTV?
    Thanks Irene Vanek
    Toronto 
    Do IIH
    Sent from my iPhone



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  • 5.  RE: Steroids in fulminant IIH

    Posted 08-12-2025 08:03
    A lumbar drain emergent is far more effective.
    Scott Forman



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  • 6.  RE: Steroids in fulminant IIH

    Posted 08-12-2025 08:45
    Fulminant IIH can be part of cerebral venous stenosis and the papilledema responds very quickly to stenting; had a young overweight patient NLP bilaterally who recovered to 20/25 w small central island in one eye.

    Sent from my iPhone



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  • 7.  RE: Steroids in fulminant IIH

    Posted 08-12-2025 10:09

    If it's fulminant, adding IV steroids is fine but the patient needs a more definitive solution as others have mentioned.

    Deb

     




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  • 8.  RE: Steroids in fulminant IIH

    Posted 08-12-2025 12:29
    Pam: but this is not IIH if it is venous sinus stenosis.

    Best Peter
    Sent from my iPhone



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  • 9.  RE: Steroids in fulminant IIH

    Posted 08-12-2025 12:33
    Of course venous sinus disease is a rule out with any presenting patient especially with fulminant iih.
    Pam

    Sent from my iPhone



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  • 10.  RE: Steroids in fulminant IIH

    Posted 08-12-2025 19:39

    IIH = venous stenosis

    Irene

     




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  • 11.  RE: Steroids in fulminant IIH

    Posted 08-12-2025 21:39
    Irene: if you know the cause, how can it be idiopathic?
    Sent from my iPhone



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  • 12.  RE: Steroids in fulminant IIH

    Posted 08-12-2025 21:41
    Chicken or egg?  

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  • 13.  RE: Steroids in fulminant IIH

    Posted 08-12-2025 23:02
    Idiopathic is a misnomer...there are lots of associated entities. Name came then cases illuminated the causes.

    Sent from my iPhone



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  • 14.  RE: Steroids in fulminant IIH

    Posted 08-13-2025 11:57
    Eric, this is the last comment I will make about this issue. We need to be scientifically accurate if we want to understand each other fully. Otherwise, instead of having soft boiled eggs, you wind up with an omelette. Precision is important in what we do particularly when the treatments are much different when we know the various causes of increased intracranial pressure or when it is truly idiopathic.

    Peter.
    Sent from my iPhone



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  • 15.  RE: Steroids in fulminant IIH

    Posted 08-14-2025 10:55
    The SNIS Cerebral Venous and CSF Disorders Group is proposing “venous intracranial hypertension” as terminology for these venous sinus stenosis (and other venous causes) cases. These likely represent the majority of “IIH” when we really look at the imaging.


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  • 16.  RE: Steroids in fulminant IIH

    Posted 08-14-2025 11:26

    From a clinical standpoint, the label 'IIH' lacks heft.


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  • 17.  RE: Steroids in fulminant IIH

    Posted 08-14-2025 12:01
    But which comes first, the IIH or the stenosis?

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  • 18.  RE: Steroids in fulminant IIH

    Posted 08-14-2025 14:39
    There are circumstances when high ICP produces venous narrowing as an epiphenominon and at times the stenosis causes the high ICP. The nature of the narrowing and the measured gradients are different in each instance.
    Peter



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  • 19.  RE: Steroids in fulminant IIH

    Posted 08-14-2025 13:01
    We’re not neurosurgeons doing shunts or interventional neurologists doing sinus stents, so where to start to determine the best course of action for the typical case? Personally, I get the MRV too, and if someone needs surgical intervention due to headaches, diplopia, or vision loss I refer to interventional neurologist for the stent if transverse sinus stenosis is present on MRV, and to the neurosurgeon for the shunt if not. Any better ideas? The interventional neurologist measures the pressure gradient before doing stenting, and I’ve seen remarkable results with these.

    Mitch


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  • 20.  RE: Steroids in fulminant IIH

    Posted 08-14-2025 20:04

    What is SNIS?

    The problem is that venous sinus stenosis can be the cause of the effect of intracranial hypertension, most commonly the former.

    I am not sure that having a separate category will be meaningful under the circumstances.

    Deb




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  • 21.  RE: Steroids in fulminant IIH

    Posted 08-15-2025 07:56
    Just one thing , venous stenosis is present in many normal people and also in cases of IIH as an accidental finding , so supposing it is the cause in the majority is not correct , pressure difference must be measured , also post stent narrowing do occur and the rate is not known , also the new concept of glymphatic drainage of CSF and it is a cause if disturbed , also should be put in context , if speaking about the patho-physiology of the disorder , actually a group of disorders 




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  • 22.  RE: Steroids in fulminant IIH

    Posted 08-15-2025 08:44
    So a pre-existing issue like venous stenosis becomes important w weight gain or medications etc!

    Sent from my iPhone



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  • 23.  RE: Steroids in fulminant IIH

    Posted 08-15-2025 09:39
    What I mean is that it is a huge area to be ruled by one verdict 





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  • 24.  RE: Steroids in fulminant IIH

    Posted 08-13-2025 14:39
    Hi Peter
    No IIH is idiopathic
    Irene 
    Sent from my iPhone



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  • 25.  RE: Steroids in fulminant IIH

    Posted 08-13-2025 16:25
    The debate about terminology is an old one , PTC includes IIH and cases with known cause as drug induced or deep sinus thrombosis , some cases are related to hormonal disturbances , hyperacute type is not specific to either the cause is known or not, however , in recent years causes are getting more evident though still many use IIH for cases related to drugs , in correct terminology as James Corbett , in many papers used and stated , PTC is the wider term that include idiopathic and symptomatic which have a cause , still there are some grey area 





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  • 26.  RE: Steroids in fulminant IIH

    Posted 08-13-2025 12:03
    IIH is becoming terribly misused echoing Peter's comment. If you have a cause it is not IIH.
    PTC Is elevated ICP with normal neuroimaging other than
    perhaps venous sinus changes (but not thrombisis), empty sella, etc and no accompanying neurologic findings other than those related to elevated ICP (eg 6th NP, H/A).  IIH is the subset of PTC that is truly idiopathic (ie no secondary identifiable cause...eg Tetracycline, vitamin A, venous sinus thrombosis). All of the other forms of PTC are secondary pseudotumor cerebri.

    Matt

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  • 27.  RE: Steroids in fulminant IIH

    Posted 08-12-2025 12:43
    If on the scale of 10 , in hyperacute IIH , only one case will respond to medical therapy to negate the need for surgery , ONSD or shunt or both sometimes , but you should use all available medications to preserve the optic nerve till surgery , even repeated LP, I will tell one strange scenario , a young woman waiting for renal transplant in the hospital without any visual complaint , Suddenly , hyperacute IIH with No PL vision bilateral , I was contracted by nephrology team and I was out of town , they wanted ONSD not Shunt because of immunosuppressives used with renal transplant , I was going to back in work in two days but I recommended to do immediately what is available , shunt as a temporary measure after repeated LP in 24 hours failed to reverse the process , shunt was done after 36 hours , VA started to improve to CF , then 1/60 , when I came back I did her bilateral simultaneous ONSD, after a week she started to see chart , then within another week she regained full vision , then the shunt was removed , and she did the renal transplant , I have been following her up for about 4 years , and she has 6/9 vision with minimal field changes , so scenarios may actually differ in each case , my last hyperacute case was 3 months ago and she did shunting as an emergency but 48 hours after shunt papilledema improved so as vision and I saw no indication for ONSD
    So Use all what you have but hours do matter in those cases 



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  • 28.  RE: Steroids in fulminant IIH

    Posted 08-11-2025 22:44

    Thank you, I have had many patients with fulminant IIH  admitted to neurology service with severe pushback to start steroids in these cases while awaiting surgical intervention, wanted the group's opinion to keep pushing for it. 


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  • 29.  RE: Steroids in fulminant IIH

    Posted 08-12-2025 07:45
    I agree with IV Steroids as you wait to do urgent surgery and to save what potential vision is there when the patient presents...my experience is they usually arrive 20/400 or worse down to NLP.
    Usually on a Friday afternoon
    Marilyn Kay



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