Hi all. I've had pulsatile tinnitus for about 6 years and had decided to just live with it. It actually doesn't bother me all that much most of the time. However, over the last year or so, I've had massive anxiety over whether it's actually okay to leave it alone or not.
My anxiety basically boils down to:
1. I'm worried about leaving it alone, in case it gets worse or something else is going on that I don't know about.
2. I'm worried about my risk of blood clots related to other conditions that increase that risk, such as COVID-19 and pregnancy. (I've not had COVID-19 as far as I know, thankfully. And I'm not pregnant, but hope to start a family soon.) This anxiety stems from knowing I have a "narrowed" vessel in my brain, according to one of my scans. So basically I worry that COVID-19 or pregnancy or something else will make me much more likely to have a blood clot because I have a smaller passage for the blood to go through.
This anxiety has led me to finally consider investigating this again.
The road so far: I developed pulsatile tinnitus in fall of 2017. I went to my primary care doctor, who sent me to an ENT. They did a hearing test and CT scan. They didn't give me any answers, sort shrugged it off. I went to a second ENT. She ordered an MRI and also realized that I needed surgery in my nose to help me breathe better. It was a turbinate reduction. I think people with deviated septums also have this done, but I didn't have enough of a deviated septum to need it corrected. They just cut out excess tissue from my nasal passages so I could breathe. She thought the surgery might help my pulsatile tinnitus. It didn't. MRI showed white spots that they didn't expect to see, so she sent me to a neurologist to rule out MS. Neurologist saw me and said it wasn't MS, ordered a follow-up MRI a year later. Also sent me to a neurosurgeon to rule out the "dangerous causes" of pulsatile tinnitus (I think he was referring to fistulas.) Neurosurgeon did an angiogram and ruled out fistulas.
The only findings on my MRI:
"There may be stenosis of the right transverse sinus near the sigmoid sinus of uncertain significance. The left transverse sinus and jugular venous system is hypoplastic as described below. Clinical correlation." and "Unremarkable MRA brain. Small diverticulum from the right jugular bulb."
When the neurologist wrote to me, he said "The MRI was unchanged. The MRA showed a small outpouching in your jugular vein which does go up near your ear nerves and may be why you have the symptoms. This is not an emergency but is likely the explanation to your symptoms. There was an addendum in your MRA which shows narrowing the drainage vein of the right transverse sinus. I don't believe it is related to your tinnitus but just wanted to make you aware. Dr. ----- can show you when you see him and I made him aware too."
That was basically it. They sorta just left me hanging, and I didn't realize I wasn't going to get to talk to the doctor again and ask any follow-up questions. The neurologist later left the area and so did my ENT, who concluded my pulsatile tinnitus was "muscular-skeletal" and told me to do exercises for TMJ because it might help. The neurosurgeon never spoke to me about the test results above, and I never got a chance to ask. I don't know what any of it means.
I'm not sure where to pick this back up. I tried calling the pulsatile tinnitus clinic in my state, but they won't take me as a patient because I live outside of their city. I tried looking online for second opinion programs and found one through Weill Cornell in NY and one in California. The CA one originally cost $700 but now costs $1000... which is a lot. I actually filled out the form for the NY one and paid the $300 fee, and they ghosted me. I got my money back thanks to a claim on my CC but apparently NY can't do the online second opinion because the doctor isn't licensed in my state.
Just feeling really lost and the anxiety isn't getting better!
My anxiety basically boils down to:
1. I'm worried about leaving it alone, in case it gets worse or something else is going on that I don't know about.
2. I'm worried about my risk of blood clots related to other conditions that increase that risk, such as COVID-19 and pregnancy. (I've not had COVID-19 as far as I know, thankfully. And I'm not pregnant, but hope to start a family soon.) This anxiety stems from knowing I have a "narrowed" vessel in my brain, according to one of my scans. So basically I worry that COVID-19 or pregnancy or something else will make me much more likely to have a blood clot because I have a smaller passage for the blood to go through.
This anxiety has led me to finally consider investigating this again.
The road so far: I developed pulsatile tinnitus in fall of 2017. I went to my primary care doctor, who sent me to an ENT. They did a hearing test and CT scan. They didn't give me any answers, sort shrugged it off. I went to a second ENT. She ordered an MRI and also realized that I needed surgery in my nose to help me breathe better. It was a turbinate reduction. I think people with deviated septums also have this done, but I didn't have enough of a deviated septum to need it corrected. They just cut out excess tissue from my nasal passages so I could breathe. She thought the surgery might help my pulsatile tinnitus. It didn't. MRI showed white spots that they didn't expect to see, so she sent me to a neurologist to rule out MS. Neurologist saw me and said it wasn't MS, ordered a follow-up MRI a year later. Also sent me to a neurosurgeon to rule out the "dangerous causes" of pulsatile tinnitus (I think he was referring to fistulas.) Neurosurgeon did an angiogram and ruled out fistulas.
The only findings on my MRI:
"There may be stenosis of the right transverse sinus near the sigmoid sinus of uncertain significance. The left transverse sinus and jugular venous system is hypoplastic as described below. Clinical correlation." and "Unremarkable MRA brain. Small diverticulum from the right jugular bulb."
When the neurologist wrote to me, he said "The MRI was unchanged. The MRA showed a small outpouching in your jugular vein which does go up near your ear nerves and may be why you have the symptoms. This is not an emergency but is likely the explanation to your symptoms. There was an addendum in your MRA which shows narrowing the drainage vein of the right transverse sinus. I don't believe it is related to your tinnitus but just wanted to make you aware. Dr. ----- can show you when you see him and I made him aware too."
That was basically it. They sorta just left me hanging, and I didn't realize I wasn't going to get to talk to the doctor again and ask any follow-up questions. The neurologist later left the area and so did my ENT, who concluded my pulsatile tinnitus was "muscular-skeletal" and told me to do exercises for TMJ because it might help. The neurosurgeon never spoke to me about the test results above, and I never got a chance to ask. I don't know what any of it means.
I'm not sure where to pick this back up. I tried calling the pulsatile tinnitus clinic in my state, but they won't take me as a patient because I live outside of their city. I tried looking online for second opinion programs and found one through Weill Cornell in NY and one in California. The CA one originally cost $700 but now costs $1000... which is a lot. I actually filled out the form for the NY one and paid the $300 fee, and they ghosted me. I got my money back thanks to a claim on my CC but apparently NY can't do the online second opinion because the doctor isn't licensed in my state.
Just feeling really lost and the anxiety isn't getting better!
