Living with Vascular Eagle Syndrome, Transverse Sinus Stenosis, and IIH: My Ongoing Battle with Pulsatile Tinnitus

[Rynnie7]

Hey there! Not sure if anyone can relate, but I'm hoping so. I haven't found anyone yet who shares my triple diagnosis: vascular Eagle syndrome, transverse sinus stenosis, and idiopathic intracranial hypertension — but maybe someday.

I had my first surgery last year to remove my styloids and decompress my left internal jugular vein, which is where my pulsatile tinnitus is. Unfortunately, that didn't resolve the pulsing. Then, earlier this year, I had venous sinus stents placed — again, no luck in stopping the pulsing. It's incredibly frustrating.

While both surgeries have resolved all my other symptoms, the most persistent and aggravating one remains: the pulsing on my left side. My brain is apparently a mystery. I'm going in for another diagnostic angiogram to see if the doctor can locate the source, but it's a roller coaster — especially when they tell you the last two procedures were supposed to fix it, because they usually do for most patients.

Apparently not for me, though.

Just hoping someone out there sees this and can relate. I went 41 years never hearing a thing, and for the past 13 months it's been a thumping symphony in my head. It gets worse with any increase in heart rate, which makes it tough when your doctor wants you to exercise and lose weight. Sigh.

 

[Sonic17]

Hey there! Not sure if anyone can relate, but I'm hoping so. I haven't found anyone yet who shares my triple diagnosis: vascular Eagle syndrome, transverse sinus stenosis, and idiopathic intracranial hypertension — but maybe someday.

I had my first surgery last year to remove my styloids and decompress my left internal jugular vein, which is where my pulsatile tinnitus is. Unfortunately, that didn't resolve the pulsing. Then, earlier this year, I had venous sinus stents placed — again, no luck in stopping the pulsing. It's incredibly frustrating.

While both surgeries have resolved all my other symptoms, the most persistent and aggravating one remains: the pulsing on my left side. My brain is apparently a mystery. I'm going in for another diagnostic angiogram to see if the doctor can locate the source, but it's a roller coaster — especially when they tell you the last two procedures were supposed to fix it, because they usually do for most patients.

Apparently not for me, though.

Just hoping someone out there sees this and can relate. I went 41 years never hearing a thing, and for the past 13 months it's been a thumping symphony in my head. It gets worse with any increase in heart rate, which makes it tough when your doctor wants you to exercise and lose weight. Sigh.

Where do you live? You must be in the US, since you have such an elaborate diagnosis and even an explanation for the cause of your tinnitus. How fortunate you are.

I'm sorry to hear that the surgeries have not resolved your tinnitus yet. I've had tinnitus for eight years, with no known reason why. Mine is not pulsatile, but more like a static head noise. It does get louder with increased exercise, but I love exercising so much (always have) that I just deal with the loudness.

I hope your next surgery helps with your tinnitus.