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.
I got a MRV done after some pretty severe headaches came back around the 9-10 week post op mark. Looks like my right transverse and sigmoid sinus is pretty narrow on the scans - while tech it’s still bilateral stenosis the right is definitely much more narrow - the words “partially collapsed” were used which accounts for my headaches returning. I also have partially empty sella and my IIH is still present. Good news is my jugular vein is healing nicely up from 2.2mm pre-op to 6mm in diameter and continues to expand. The question now is do I hope over time that my transverse sinus stenosis opens up or do I go ahead with stent placement procedure. While I don’t like the idea of placing stents in my early 40s, the thought of living with 24/7 pulsatile tinnitus and headache cycles that come and go for decades to come is also not tenable. Anyone have experience with stents? I’m now 14 weeks post op I should say. Not much change. Still have the pulsatile tinnitus and intermittent headaches. Doctor thinks stents would be best relief for remaining symptoms.
@Rynnie7 - I heard from someone who had vascular ES surgery done by Dr. Damrose, that he’s had patients for whom it took about 9 months to recover & start feeling good again. The healing time frame differs from person to person so some do feel symptoms relief sooner than others. The fact you have narrow sigmoid & transverse sinuses likely isn’t expediting your recovery. Also, if you had bilateral IJV compression & have only had one side decompressed, you may need the second side to be opened up to get the best results.
I have no personal experience w/ stents, but do know they’re controversial. It would be worthwhile talking to your surgeon about the long-term success rate w/ stents in the sinuses in the skull. Find out how often they move or cause blockages vs staying in place & open. Make sure you educate yourself about the upsides & downsides of stents in the areas you’re considering having them place.
I had a shunt put in my inner ear in 2019 to help relieve symptoms of Meniere’s Disease. I trusted my doctor’s recommendation. The shunt only helped for a couple of years, but the surgery to placed it has left me w/ other symptoms that are very annoying. I should have researched the surgical procedure & tried to find out more about others’ outcomes rather than just jumping in with both feet. I might not have had the surgery if I’d known what I do now.
@Rynnie7 I noticed that you are sometimes in CA? If that’s the case, maybe you can get an appointment with Dr. Amans at UCSF. He is an interventional radiologist and has runs the pulsatile tinnitus clinic. You could have an angiogram with balloon occlusion testing which could identify the source of the tinnitus. Basically he inflates a balloon in different regions of the vasculature of the brain and then you tell him whether or not the tinnitus stops. That way you can know in advance if a stent would work.
Thanks @Chrickychricky , that sounds very helpful…
@Rynnie7 you could have a search of discussions; stents have been mentioned a bit, I think if I remember correctly the stents are less likely to shift from the sinuses, whereas when people have had them in the IJV it can be less successful. There’s a research paper by Dr Hepworth et al, but not sure if that’s just IJV stents or if there’ll be any useful info for you:
New paper by Fargen, Hui and Hepworth, et al - General / Research Papers - Living with Eagle
I agree with @Isaiah_40_31 that it’s something to be considered carefully…
Hi @Rynnie7. I just saw your post about the pulsatile tinnitus. I had surgery on one side in June 2024, so am not yet quite a year from surgery. I had improvements in my pulsatile tinnitus right after surgery and then noticed it was intermittently happening a few weeks after surgery. I also had/have IIH. My PT was greatly improving, but then I got sick about 8 weeks after surgery and all of the coughing seemed to make it worse, but not as bad as it was prior to surgery. I still have it every day although it is only at certain times, is quieter, & doesn’t generally interfere. I also have some stenosis in some other areas and am not sure if it will be recommended to put in stents at some time. My doctor is taking a wait & see approach to see how much recovery we are able to get from the first surgery. It seems that you are still pretty early in the recovery process and I’m sure there is a lot of inflammation in the area. I hope that as that inflammation goes down that you will see a great deal of improvement so that things are more tolerable for you. I know that it can be pretty discouraging to hear that pulsing and to feel the headache again after surgery, but keep reminding yourself that your body is continuing to heal.