Insights on Meningocele and Related Symptoms
I would appreciate your thoughts on my situation—thank you! In 2019, during a meningitis incident, a right petrous apex meningocele was discovered when the white blood cell count in my cerebrospinal fluid (CSF) exceeded 7100. That's an astonishing figure! Unfortunately, doctors were unable to determine the exact type of meningitis, as bacterial cultures failed to grow, and the WBC count didn’t correspond with typical viral or aseptic markers. A specialist in infectious diseases expressed skepticism about a meningitis diagnosis, noting that my cognitive clarity remained sharp throughout the ordeal. I'll provide the latest MRI and CT findings as well as significant images in the comments section. The meningocele seems to be progressing, evidenced by bone erosion. Prior imaging indicated persistent fluid in the right mastoid air cells, which is no longer observed in recent scans. I have undergone numerous lumbar punctures; however, they struggled to record an opening pressure due to unusually low levels. During the last attempt, they could only extract about half the necessary CSF since there simply wasn’t enough present, even after three separate punctures and being positioned on a tilt table. I experience a range of symptoms, including changes in vision, pulsatile tinnitus, issues with posture, and episodes of tachycardia. The most intense symptom, however, is trigeminal neuralgia, which can lead to severe attacks lasting over 40 minutes. Based on my symptoms and various self-management strategies, I suspect my condition might fluctuate between low and high pressure. For relief, I either lie flat and increase my caffeine intake or sleep at an angle while consuming diuretic tea as if my well-being depended on it. Since receiving this diagnosis five years ago, I have also developed degeneration in my cervical spine, including joint slippage and bone spurs, along with right TMJ degeneration and thoracolumbar scoliosis. Although I’m not sure if these are all connected, I think it's worth mentioning. Thank you for reading! **CT Findings:** **Right Side:** - **External Auditory Canal:** Open without any visible mass or abnormal bone growth. - **Middle Ear and Ossicles:** Normal tympanic membrane; the middle ear and Prussak's space are clear. The scutum and ossicles show no signs of erosion, and the facial nerve appears unremarkable. - **Mastoids:** Clear. Stable lucency and thinning of the petrous apex bone, reflecting CSF signal intensity and continuity with the right Meckel's cave, indicating the likelihood of a Meckel’s cave cephalocele. - **Cochlea and Vestibular Apparatus:** Normal structure and function, with no adjacent bone erosion or signs of semicircular canal dehiscence or vestibular aqueduct enlargement. **Left Side:** - **External Auditory Canal:** Open without any visible mass or abnormal bone growth. - **Middle Ear and Ossicles:** Normal tympanic membrane; the middle ear and Prussak's space are clear. The scutum and ossicles show no signs of erosion, and the facial nerve appears unremarkable. - **Mastoids:** Clear. - **Cochlea and Vestibular Apparatus:** Normal structure and function, with no adjacent bone erosion or signs of semicircular canal dehiscence or vestibular aqueduct enlargement. **Other Findings:** - Scalloped lucencies in the right TMJ articular eminence indicate small areas of dehiscence, potentially due to a combination of degenerative joint disease and arachnoid granulations. **MRI Findings:** There is no evidence of acute or subacute ischemia or hemorrhage, nor is there any mass effect or midline shift. No signs of cortical atrophy or ventricular enlargement are present, and there are no suspicious marrow lesions. A prominent fluid signal near the right petrous apex, related to the right Meckel's cave, measures at least 1.8 cm diameter. It shows no complex imaging characteristics, maintaining discrete margins without enhancement or significant internal structure. Postcontrast imaging reveals no abnormal enhancement in the brain or meninges, with major draining veins appearing patent. Bilateral internal auditory canals are unremarkable, and there is no evidence of white matter disease or atrophy in the midbrain. The craniocervical junction and upper cervical cord are also normal. **Impression:** 1. A simple cystic lesion measuring 1.8 cm at the right petrous apex adjacent to the fifth cranial nerve root/Meckel's cave was identified, correlating with the history of right trigeminal neuralgia. Follow-up imaging should include dedicated internal auditory canal studies. If previous CT temporal bone imaging becomes available, adjustments can be made accordingly. 2. The remaining brain and orbits appear normal, and postcontrast imaging results are unremarkable.
Answers (1)
2/6/2026, 5:10:51 AM
OpenHealth AI
Thank you for sharing your complex medical history and current concerns regarding the meningocele and its associated symptoms. It’s clear that navigating through these issues has been challenging, and I appreciate your openness in discussing them.
Key Points:
- Meningocele Progression: Your latest imaging suggests that the meningocele at the right petrous apex is progressing with bone erosion, which could be contributing to your symptoms.
- Symptoms Management: You are experiencing a range of distressing symptoms, including trigeminal neuralgia, changes in vision, and dizziness, which may be linked to fluctuations in cerebrospinal fluid (CSF) pressure.
- Cervical Spine Concerns: You also mentioned degenerative changes in your cervical spine, which could potentially have impacts on your neurological symptoms.
Explanation:
The combination of findings you've described indicates a significant and possibly evolving neurological condition. Trigeminal neuralgia, particularly in the context of a meningocele and CSF fluctuation, can be quite painful and debilitating. CSF pressure issues may explain some of your symptoms like vision changes and pulsatile tinnitus. Additionally, the degenerative changes in your cervical spine and TMJ might be independent or compounded by the pressure dynamics in your CSF system.
Next Steps:
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Symptom Relief and Monitoring:
- Continue your current self-management strategies that help stabilize your symptoms—like maintaining an upright position and adjusting fluid intake to manage CSF pressure. However, keep a detailed diary of your symptoms to identify any potential triggers or patterns.
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Regular Follow-Up Imaging:
- Stay on a schedule for follow-up MRIs and CT scans, particularly focusing on cranial imaging, which would help monitor the meningocele and any CSF dynamic changes.
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Pain Management:
- Consult your healthcare provider about targeted medications for trigeminal neuralgia. Medications like carbamazepine or gabapentin might offer some relief. Discuss the efficacy of caffeine and diuretic tea as part of your routine since they can have variable effects on some individuals.
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Consider Multidisciplinary Care:
- Engage with a team that may include a neurologist, neurosurgeon, and pain management specialist. Given the complexity of your condition, a comprehensive approach may identify more tailored treatment options.
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Evaluate Cervical Spine Issues:
- Consider discussing your spinal health with an orthopedic or neurosurgical specialist to evaluate if these degenerative issues could be effectively managed to alleviate some of your neurological symptoms.
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Stay Educated and Proactive:
- Keep yourself informed about your condition and potential treatments through reputable sources and support groups for individuals with similar conditions. This community can offer emotional support and practical insights.
Your ongoing experience is valid, and the steps above are designed to help you manage your current symptoms while keeping an eye on the broader picture regarding your health. Please keep me updated on your progress or any new symptoms, and I’d be glad to assist further.
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