New here and just looking for any bright spots or success stories post op for pulsatile tinnitus.
While my surgery went well (4 weeks post op), my 24/7 pulsatile tinnitus is raging as ever. I have a dual diagnosis of IIH and ES. My jugular vein was compressed between my c4 and c6 vertebrae and post op most of my most debilitating symptoms are gone (migraines, pressure headaches, shortness of breath, blurry vision episodes). But this damn pulsatile tinnitus is still 24/7 making sleep and bending down still challenging (lots of whooshing). At the six month mark I’ll consult ENT/head and neck surgeon, but hoping to hear from others who saw this resolve with patience and time? My neuro surgeon’s working theory is that my IIH will go into remission in a year or so post op, but a lot is wait and see. Any encouraging post op stories are helpful!
@Rynnie7 - You’re still in pretty early recovery & though I didn’t have pulsatile tinnitus as one of my ES symptoms, I can tell you it took about 4 months post op for me to be able to solidly note some of my worst symptoms were beginning to resolve. It took a year for complete resolution for some of them as well. We’ve had a few members who still had pretty severe symptoms for several months after IJV decompression & were put back on a blood thinner for a few months which did reduce their symptoms somewhat dramatically. That’s something you could request if the PT continues to be so intense. Plavix & Brillinta are the two blood thinners mentioned most often on this forum as being Rxed for compression symptoms.
BTW, who did your surgery? I’m glad you’ve had good recovery from some of the other awful symptoms you had!
@Rynnie7 PT was one of the symptoms the VES surgery did not resolve. That plus aural fulness and dizziness have put me back in self-advocacy mode to see if there is a specific cause or causes and if anything is treatable. I started with an ENT who referred me to a neuro ENT wants me to get a bunch of testing at UCSF’s Balance and Falls Center. The journey continues.
I’m glad that you’ve been able to have surgery! Mine did go after surgery, & I rarely get it, or the head pressure now. But my IJVs were compressed by the styloids, so I didn’t have an cervical vertebral process compression/ involvement. I’m a bit confused though at where you say the compression was, as that’s pretty low to be from the styloids alone, usually we see compression from the styloids at C1/ C2 level?
I’m glad that you’ve seen some improvements already, try to focus on those positives, and hopefully with time the PT will improve, as @Isaiah_40_31 says it is still very early days after your surgery…
@Chrickychricky - I’m really sorry to learn you’ve got some ongoing problems that are setting you back again. I really hope the testing the neuro ENT is suggesting will help you. A doctor you may want to consider seeing at UCSF is Dr. Amans as he could help diagnose cause of your pulsatile tinnitus & perhaps help get it treated. Dr. Hepworth has referred some of his patients with ongoing PT problems to Dr. Amans. You will need to get a referral to see him.
Thanks @Isaiah_40_31 I first met Dr Amans in 2019 at the pulsatile tinnitus clinic. He also did my IR angiogram. One possible explanation he found for my PT is that my internal carotid artery is not encased in bone as it should be when it passes by the structures of the inner ear. No treatment for that if that’s the cause and it doesn’t explain the aural fulness or the dizziness…or maybe it does and someone at UCSF will explain that to me.
I hope that you can get some answers
I’m glad you’ve seen Dr. Amans & he’s given you a reasonable explanation as to the cause of your PT. I’m sorry there’s no way to treat it though. I’m sorry for the addition of aural fulness & dizziness to that already annoying problem. I hope that further testing will reveal a treatable cause.