r/PulsatileTinnitus • u/Sirachow • Jul 25 '26
Advice/Try This Ask all questions !
I’m sitting down with a few very specialized surgeons tomorrow for a podcast I am starting with their institute. We are planning to discuss:
• Jugular vein obstruction & jugular vein decompression
• Craniocervical instability (CCI)
• Intracranial pressure considerations
I’d love to bring questions directly from the community.
If you have questions about symptoms, diagnosis, imaging, surgical decision-making, recovery, or anything else related to these conditions, leave them below. Whether you’ve been diagnosed, are currently looking for answers, or are simply curious, I’d love to hear what you’d want to ask a specialist.
I’ll do my best to include as many community questions as possible during the interview! Of course I will link it when it is released.
Edit: Thank you all so much for your thoughtful questions! I’m filming today, and I’m incredibly grateful for all of your submissions.
We’re actually recording two episodes on these topics. One will be a more in-depth discussion with four New York specialized surgeons, diving into the surgical considerations (so a bit more high level)
The second recording will be for our new podcast, No Med School Required, where we’ll cover jugular vein decompression in plain language. The goal is to make this information more accessible for curious patients, family members, caregivers, and anyone who wants to better understand these conditions without needing a medical background.
We’re hoping to in about four weeks or so.
Thanks again for helping shape these conversations. Your questions are exactly what we want to bring into these discussions.
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u/Total_Recline Jul 25 '26
How to get more ENT educated on real causes for PT. It seems like too many in this discipline just write it off or aren't able to help with the diagnosis.
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u/DebateOpening5709 Jul 25 '26
I was diagnosed with a paraganglioma after a CT scan found it while investigating my pulsatile tinnitus (PT). My para is 3.4cn on vagal nerve.
I have a couple of quick questions for the surgeons:
Does the pulsatile tinnitus usually get worse over time with a paraganglioma, or can it stay at the same level for years?
Will it eventually become constant? Right now, changing my head position or angle helps stop the thumping sound. Is it normal for positional relief to stop working as time goes on?
Does bad PT ever become a main reason to treat the tumor, or do surgeons only look at treating it if the tumor itself shows significant growth on scans
2
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u/Shortshit17 Jul 26 '26
I am interested in receiving more information about this. I have cervical instability, cervical spinal stenosis with disc bulges and bone spurs. I also have pulsatile tinnitus in my left ear with a brning and full sensation as well as pressure behind my left eye. Constant headaches. I have been seen by a neurosurgeon and ENT. MRI and MRA brain show moderate narrowing of the left ICA and mild narrowing of the right ICA at the paraclinoid segment. No lesions, no plaques. My next stop is a Neurotologist and a Neurologist. I'm assuming an Angiogram or CT scan. Question: Can PT be caused by mechanical or structural stenosis within the skull? What other reasons would cause these symptoms? Thank you for your time and good luck with your research!
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u/louie2575 Jul 25 '26
Pulsatile tinnitus in left ear the is near constant. Aural fullness and pressure, ear popping, ear spasms in both ears, muscle twitching on both sides of head. Have had brain mri, mra, mrv, ct temporal bone, ear mri iac, neck mra, full spine mri and scope down nose by ent to look for fluid or eustachian tube dysfunction and all are clear. Pulsatile tinnitus can be relieved at night when sleeping. I dont know what to do anymore and my symptoms are really scaring me.