Understanding Your Prognosis with Autoimmune Disease and Neurological Symptoms
I cannot provide a specific prognosis for your individual case because the evidence provided does not address sudden sensorineural hearing loss, vestibular schwannoma, acoustic neuroma, or the "SeaSHeL study" you referenced. Your question requires specialized neuro-otologic evaluation that falls outside the scope of the autoimmune hepatitis, immune checkpoint inhibitor toxicity, and general autoimmune disease guidelines provided in this evidence base.
What the Evidence Does Tell Us About Autoimmune-Related Neurological Disease
Autoimmune Vertigo and Inner Ear Disease
Autoimmune-mediated inner ear pathology can present with vertigo, hearing changes, and vestibular symptoms, and early corticosteroid treatment offers the best chance for recovery 1. The key features include:
- Autoimmune vertigo results from abnormal immune responses directed against inner ear components, causing functional or anatomical alterations with potentially devastating inflammatory reactions 1
- Alternating phases of well-being and disabling symptoms strongly suggest underlying autoimmune conditions 1
- Earlier diagnosis enables prompt steroid therapy with elevated chances of preventing irreversible inner ear damage 1
- Corticosteroids represent the most effective and universally accepted treatment for autoimmune vertigo 1
Your Normal MRI Findings Are Reassuring
Your two normal MRI scans (one for lupus cerebritis, one for migraine) make certain diagnoses less likely:
- Acoustic neuromas and vestibular schwannomas typically show clear MRI abnormalities - your normal imaging argues against these diagnoses
- The temporal lobe T2 changes you mention are attributed to post-seizure changes, not tumor
- Rapid tumor growth between your two MRI timepoints would be extremely unusual and would likely be visible
Autoimmune Neurological Disease Prognosis
The evidence addresses immune-related neurological complications but focuses on checkpoint inhibitor toxicity rather than primary autoimmune disease:
- Autoimmune encephalitis and neurological complications can present with cranial nerve involvement, and moderate-to-severe cases warrant methylprednisolone 1-2 mg/kg/day with potential escalation to pulse dosing (1g IV daily for 3-5 days) plus IVIG or plasmapheresis 2
- Patients with autoimmune neurological disease who receive early aggressive immunosuppression have better outcomes than those with delayed treatment 2
Critical Gaps in Addressing Your Specific Question
The evidence provided does not contain:
- Information about the "SeaSHeL study" or its 48% prognosis figure
- Specific prognostic data for sudden sensorineural hearing loss in autoimmune disease
- Guidelines for acoustic neuroma or schwannoma growth rates
- Autoimmune disease as a variable in hearing loss prognosis studies
What You Need Next
You require urgent evaluation by a neuro-otologist or neurotologist who can:
- Perform audiometry to characterize your hearing loss pattern
- Conduct vestibular function testing
- Review your MRI images directly (not just reports) to exclude subtle findings
- Order autoimmune serologies specific to inner ear disease if not already done
- Consider repeat MRI with dedicated internal auditory canal sequences if clinical suspicion remains high
Your mention that one provider gave recovery examples with steroids suggests consideration for a trial of corticosteroids 1, but this decision requires direct clinical evaluation of your specific presentation, timing, and severity of symptoms.
The discrepancy between your providers' opinions (0% vs. rare cases with steroid recovery) highlights the need for subspecialty consultation rather than relying on general prognostic estimates that may not account for autoimmune etiology 1.