Finally Pulsatile Tinnitus Diagnosed: Internal Jugular Vein Stenosis

[Stillsearching]

This will be the abridged version and I'll answer any questions people have. I've had tinnitus (ringing), pulsatile tinnitus (whooshing), occasional bouts of nasty vertigo, brain fog, and other fun symptoms for over a decade now. They all basically started at once. I always assumed the pulsatile tinnitus had to be indicative of blood flow issues but my doctor's all assured me it's normal and benign. Thanks to this forum actually I got motivated to explore it more as my symptoms have slowly but surely progressed over the years. @tiniturtle's thread was a huge help in getting an answer. I went and got a CTA done which turned up "completely normal". I brought that scan to a neurotologist at first because I mixed that up with neurointerventional radiologist and they also told me my scan was 100% normal. I then found a neurointerventional radiologist in Boston and he pinpointed the source of my sound instantly. Corona slowed things down but he was able to read my scans more thoroughly and found a list of things that indicated a further problem. So we did a full angiogram and confirmed intracranial hypertension secondary to bilateral internal jugular vein stenosis. This is pretty rare but it would explain basically all of my symptoms I've been living with for more than half my life.

I can relate to a ton on this forum. I didn't always hear the pulsatile tinnitus, only at certain times or at certain angles like leaning back or lying at certain angles. I'm waiting for the treatment plan now to see how my symptoms will resolve but the prognosis is pretty good. Happy to answer any questions. Thanks a ton for the help on this forum

 

[MissM]

@Stillsearching, what were your other symptoms besides the ones you mentioned. Is your pulsatile tininitus/tinnitus 24/7? I'm glad you found your cause

 

[tiniturtle]

I'm glad you're getting answers now. It's unfortunate that you had to deal with it for so long, but it's likely with treatment, that all the symptoms will go away. Getting to the right person and being persistent really is key. Send me a message and let me know which doctor you ended up seeing.

 

[UKBloke]

This really highlights a major problem we have in medicine, certainly with diagnostics. It's like that moment when one sticks a finger in the ear and says, now I can't hear the rumbling, and then people look at us like we're bonkers. Basically, there's a reason for everything.

Thanks for the post and good luck going forward with any treatment you may have.

 

[Lane]

Happy to answer any questions. Thanks a ton for the help on this forum

Wow @Stillsearching, kudos and five stars to you for your impressive sleuthing and persistence! I can relate to much of what you write, and your findings are fairly fascinating to me. I've tried to do my own research for many years on what might all be going on in my neck and cranial areas, as I've also experienced head pressure, instense headaches, brain fog (often extreme), occasional PT, extreme fatigue, etc. I've been able to somewhat ameloriate some of these symptoms some of the time, but I'm always looking for more permanent answers. I think a large part of my problem is cranial instability, and am hoping to possibly get some prolotherapy on that sometime soon (with the hope it will improve my tinnitus situation).

I'm curious if you've ever considered whether you might have been dealing with something called Myalgic Encephalomyelitis, also known as ME/CFS? Many of the symptoms you experienced would seem to fall under that umbrella. I ask this because there's actually a fair amount of overlap between tinnitus and ME/CFS, and quite a few people with ME/CFS end up experiencing improvement(s) after addressing some structural issues. Some of the most severe structural cases end up with a diagnosis of Cerviocervial Instability (CCI) & Atlantoaxial Instability (AAI), and some have gotten fusion surgery. The following link is to a truly remarkable tale of how one young man perservered in his quest to discover what was causing his extreme health problems (bedridden 24/7).

Cerviocervial Instability (CCI) & Atlantoaxial Instability (AAI) Story – 2018
—ME/CFS Portion in First Five Pages – CCI/AAI Story the Second Five Pages—
​

I don't have the time right now to list a bunch of questions, but I'll try to get a little more focused on it today, and anticipate I'll be getting back sometime soon. -- Congratulations on your discoveries--and thanks for posting your story!

 

[Stillsearching]

I've considered craniocervical instability because I have extreme crepitus and crunch in my neck. My cta revealed an incomplete fusion of the posterior arch at c1 and the angiogram confirmed my c1 transverse process is compressing my internal jugular vein between it and the styloid process. I'll look into your link as well to see if there's more in there.

Have you had an MRI/MRA?

 

[Steph1710]

@Stillsearching this is absolutely amazing to read!

Guess what!? I have unilateral venous stenosis which I know I have 100% because I can hear my heartbeat in my left ear, which is in time with my pulse, and I can immediately stop the sound with gentle jugular compression.

I was even told I have raised ICP yesterday by a neurologist. She said the two veins in my head are flattened due to the pressure. She said this is probably secondary to a venous outflow blockage, but they done the scan and everything came back "normal"... Hahaha!

I mean for flip sake!! I almost laughed because I've been researching PT since 2018, and I know that this is ALWAYS what they tell patients. "there's nothing wrong."

I wrote a 1000 word letter to neurology yesterday telling them to look again, because if I can stop the sound myself by pressing on my neck, and the scan showed something, then it can be fixed.

still searching, may I pm you? I have some questions.


Kind Regards,

Steph

 

[Stillsearching]

You can absolutely pm me. Did you seek the opinion of a neurointerventional radiologist?

 

[jeas]

@Stillsearching What does your PT sound like? Is it a beep?

 

[Juan]

So we did a full angiogram and confirmed intracranial hypertension secondary to bilateral internal jugular vein stenosis

It's awesome you finally got to know the root cause! Good work!

Is it possible to fix what doctors found on the angiogram?

 

[Stillsearching]

@Stillsearching What does your PT sound like? Is it a beep?

It's a little whooshing, like water rushing by my ear in sync with my heartbeat. Valsalva pushes it past for a second then it returns.

It's awesome you finally got to know the root cause! Good work!

Is it possible to fix what doctors found on the angiogram?

They're searching now for the best angle. There are only a handful of cases. Stenting is a possibility but results have been mixed. I'm pushing for a styloidectomy and a resurfacing of the transverse process at c1

 

[Stillsearching]

@Stillsearching, what were your other symptoms besides the ones you mentioned. Is your pulsatile tininitus/tinnitus 24/7? I'm glad you found your cause

Thanks! The visual symptoms were the ones that triggered me to really start looking again. As I mentioned this is the abridged version but it's been over 15 years of doctors telling me I needed anxiety meds so every few years I'd get remotivated with new symptoms and would take a deep dive. The PT was not 24/7 it was only at certain times and sitting at certain angles. I did have my other symptoms more often though.

This really highlights a major problem we have in medicine, certainly with diagnostics. It's like that moment when one sticks a finger in the ear and says, now I can't hear the rumbling, and then people look at us like we're bonkers. Basically, there's a reason for everything.

Thanks for the post and good luck going forward with any treatment you may have.

Yes it absolutely is a massive problem. I genuinely believe my condition is probably the cause of tons of various issues going on like visual snow for instance or "benign" intracranial hypertension

I'm glad you're getting answers now. It's unfortunate that you had to deal with it for so long, but it's likely with treatment, that all the symptoms will go away. Getting to the right person and being persistent really is key. Send me a message and let me know which doctor you ended up seeing.

Thanks so much! Your help was the key in finding my diagnosis and I have actually sent your thread off to several people I talk with online who have PT among other symptoms and all get looked at like they're crazy. It's crazy to me how uninformed GPs and ENTs are on the condition.

 

[tiniturtle]

Thanks! The visual symptoms were the ones that triggered me to really start looking again. As I mentioned this is the abridged version but it's been over 15 years of doctors telling me I needed anxiety meds so every few years I'd get remotivated with new symptoms and would take a deep dive. The PT was not 24/7 it was only at certain times and sitting at certain angles. I did have my other symptoms more often though.

Yes it absolutely is a massive problem. I genuinely believe my condition is probably the cause of tons of various issues going on like visual snow for instance or "benign" intracranial hypertension

Thanks so much! Your help was the key in finding my diagnosis and I have actually sent your thread off to several people I talk with online who have PT among other symptoms and all get looked at like they're crazy. It's crazy to me how uninformed GPs and ENTs are on the condition.

Also send the neuroangio site pulsatile tinnitus section. That information is invaluable. That site is maintained by the doctors that treat me at NYU.

http://neuroangio.org/diagnosis-and-treatment-of-pulsatile-tinnitus/

 

[MissM]

@Stillsearching
Thanks for your reply. It gives us hope

XX

 

[LauraK4]

@Stillsearching - that's just fantastic that all of your years of searching finally have brought you to answers. You mentioned that Stenting may not achieve desired results. I'm interested to know if you happen to have learned the approximate success rate from Stenting, either from your searching or your interventional radiologist. I also have P.T. For a year now, and @tiniturtle has given me a recommendation and information as well.

Please take us along on your further medical journey.
Laura

 

[tiniturtle]

@Stillsearching - that's just fantastic that all of your years of searching finally have brought you to answers. You mentioned that Stenting may not achieve desired results. I'm interested to know if you happen to have learned the approximate success rate from Stenting, either from your searching or your interventional radiologist. I also have P.T. For a year now, and @tiniturtle has given me a recommendation and information as well.

Please take us along on your further medical journey.
Laura

In my case, stenting seems to have helped a great deal. I forget that it's in there most of the time.

 

[Stillsearching]

@Stillsearching - that's just fantastic that all of your years of searching finally have brought you to answers. You mentioned that Stenting may not achieve desired results. I'm interested to know if you happen to have learned the approximate success rate from Stenting, either from your searching or your interventional radiologist. I also have P.T. For a year now, and @tiniturtle has given me a recommendation and information as well.

Please take us along on your further medical journey.
Laura

Stenting is great depending on the condition. It's a super simple procedure and it's easy to monitor. What is your condition? I don't remember tiniturtles exact condition, I believe it was DAVF.

according to my doctor my condition is incredibly rare in terms of reports/literature. I have IJV stenosis due to extrinsic compression by an overgrown styloid process (eagles syndrome), and an overgrown transverse process at c1 of the vertebrae. This is pinching the veins on both sides causing significant stenosis.

The reason stenting has been mixed for this condition is the extrinsic compression just causes the stent to collapse and pinch off over time. Again there is very little literature, but I've read some success stories, some stories with success at first then slowly reintroduction of the condition, and then finally failure to alleviate symptoms with stenting, the success rate is pretty low. On the other hand there is one case of a man in his mid 40s who had resurfacing done on the styloid and c1 and he had full resolution of his symptoms including chronic tinnitus, pulsatile tinnitus, high frequency hearing loss, balance issues, migraines, etc.

So depending on your condition stenting is a great option.

 

[Whitby2773]

Hi Stillsearching

I've had PT for about 10 years and recently had a carotid artery stent inserted. No help, as it turns out. I'm in Boston, and am looking for someone who might help me address this problem and wondered if you'd mind sharing the name of the person who gave you your diagnosis? So many doctors are just dismissive about this problem, despite every logical thought process telling me this can't be either normal or healthy.

 

[Stillsearching]

Hi Stillsearching

I've had PT for about 10 years and recently had a carotid artery stent inserted. No help, as it turns out. I'm in Boston, and am looking for someone who might help me address this problem and wondered if you'd mind sharing the name of the person who gave you your diagnosis? So many doctors are just dismissive about this problem, despite every logical thought process telling me this can't be either normal or healthy.

Absolutely. Mohamad Abdalkader out of BMC helped me. He's a really great doctor and a very compassionate guy.

Can I ask what tests you've had and who you have seen?

 

[Whitby2773]

Absolutely. Mohamad Abdalkader out of BMC helped me. He's a really great doctor and a very compassionate guy.

Can I ask what tests you've had and who you have seen?

Hi Stillsearching

I've been seeing cardiologists, mainly, and orthopedic surgeons. They tell me it's not heart related, then tend to dismiss it as not a problem. I saw a neurologist a few weeks ago, and he said it wasn't PT, as it didn't have the whooshing sound that he said marked it as PT. Personally, I'm wondering if I just used different language to describe it. It's high pitched ringing in time with my heartbeart, and recently, as well as that, when I lay down I hear a slightly lower pitched sound which IS more whooshing-like. It seems to be in both ears, not just on one side. It's relieved when I clamp my teeth.

I'm seeing an ENT on Monday and will push harder this time, as I've started to develop some slight pressure behind my right eye, intermittent headache at the base of the skull and in the temples, and a sense of pressure in my head - especially posturally based.

I have Crohn's disease and have very high systems-wide inflammation. Consequently, I'm developing blockages in my arteries and have had 2 stents place - one cardiac and one in the carotid artery - in the last 9 weeks. On Wednesday I had a bad eye bleed (in the white of the eye) which cleared up quickly but which hurt and is still somewhat achy. I also have that vision 'aura' one normally gets prior to getting a migraine - where there seems to be rippling (for want of a better expression) across the upper right quadrant of my vision. I don't get migraines from it - just the aura. I've also had lockjaw a number of times over the last 10 years.

I've had a CT with contrast - but I'm not sure what that found. The neuro didn't seem concerned and didn't mention anything other than the carotid, which had the stent placed after my appt with him.

I've been tested for postural vertigo (that's a 'yes'). My eyesight doesn't show any marked recent deterioration.

So it's the basic mish-mash of stuff.

 

[Stillsearching]

Hi Stillsearching

I've been seeing cardiologists, mainly, and orthopedic surgeons. They tell me it's not heart related, then tend to dismiss it as not a problem. I saw a neurologist a few weeks ago, and he said it wasn't PT, as it didn't have the whooshing sound that he said marked it as PT. Personally, I'm wondering if I just used different language to describe it. It's high pitched ringing in time with my heartbeart, and recently, as well as that, when I lay down I hear a slightly lower pitched sound which IS more whooshing-like. It seems to be in both ears, not just on one side. It's relieved when I clamp my teeth.

I'm seeing an ENT on Monday and will push harder this time, as I've started to develop some slight pressure behind my right eye, intermittent headache at the base of the skull and in the temples, and a sense of pressure in my head - especially posturally based.

I have Crohn's disease and have very high systems-wide inflammation. Consequently, I'm developing blockages in my arteries and have had 2 stents place - one cardiac and one in the carotid artery - in the last 9 weeks. On Wednesday I had a bad eye bleed (in the white of the eye) which cleared up quickly but which hurt and is still somewhat achy. I also have that vision 'aura' one normally gets prior to getting a migraine - where there seems to be rippling (for want of a better expression) across the upper right quadrant of my vision. I don't get migraines from it - just the aura. I've also had lockjaw a number of times over the last 10 years.

I've had a CT with contrast - but I'm not sure what that found. The neuro didn't seem concerned and didn't mention anything other than the carotid, which had the stent placed after my appt with him.

I've been tested for postural vertigo (that's a 'yes'). My eyesight doesn't show any marked recent deterioration.

So it's the basic mish-mash of stuff.

That CT with contrast can be useful, but I'm not 100%. Was it a CTA? What you want to do is get those scans on a disc and bring them to Mohamad, if it's there he will absolutely find it. If it's not enough he'll order some tests for you. I strongly recommend at least giving him a visit.

 

[Whitby2773]

That CT with contrast can be useful, but I'm not 100%. Was it a CTA? What you want to do is get those scans on a disc and bring them to Mohamad, if it's there he will absolutely find it. If it's not enough he'll order some tests for you. I strongly recommend at least giving him a visit.

Yes, it was a CTA. I'll make an appt and let you know how I go. Thank you so much.

 

[Stillsearching]

Yes, it was a CTA. I'll make an appt and let you know how I go. Thank you so much.

Ooooo that's perfect that's the gold standard for imaging outside of a traditional angiogram.

 

[Whitby2773]

Ooooo that's perfect that's the gold standard for imaging outside of a traditional angiogram.

Stillsearching, if you were stented, would it be in the jugular?

ETA Also - when you say you had an angiogram, was it a CTA or did you have the whole thing via the groin entry etc?

And my apologies for asking so many questions! Pls tell me if I'm being too invasive.

 

[Stillsearching]

Stillsearching, if you were stented, would it be in the jugular?

ETA Also - when you say you had an angiogram, was it a CTA or did you have the whole thing via the groin entry etc?

And my apologies for asking so many questions! Pls tell me if I'm being too invasive.

Ask as many questions as you'd like! The cta was the initial scan I did thanks to tiniturtles guide. Funny enough my initial doctor who was at Lahey Burlington told me I was just anxious and it was all in my head and rushed me out of there. Got my scans on a disc and found a neuro interventional radiologist.

So my first visit was with just the cta. Dr. Abdalkader saw the cause immediately, but it takes a bit for the scans to be uploaded so he told me not to worry too much as I didn't have any glaring faults given my issue was venous not arterial. After the scans fully uploaded he carefully went over them and was able to determine why my vessels were all massively dilated in the brain. That's when he recommended the full angiogram through the groin and everything. That was not a ton of fun, but it confirmed the diagnosis and the images are invaluable for finding a proper treatment for me

Edit- whoops missed the first question. If I was stented it would be my internal jugular veins. Given the nature of my condition it likely wouldn't be very effective though.

 

[Stillsearching]

Figured I'd update this. Just had surgery about a week ago to remove the compression on my internal jugular vein. It's bilateral but they insisted on only doing one side at a time. So far the wooshing is still there, but they said that's to be expected for a few reasons- 1. Tons of swelling, and 2. The vein had been compressed for so long it's pretty damaged/fibrosed. The good news is it should continue to improve and if they did make enough room a balloon dilation could be the next step. I swear some of my strange neurological symptoms have already drastically improved, I'm hoping I can make something resembling a full recovery.

 

[Michael01]

Absolutely. Mohamad Abdalkader out of BMC helped me. He's a really great doctor and a very compassionate guy.

Can I ask what tests you've had and who you have seen?

I only wish I lived in the U.S as here in Australia I'm not really sure on the "best" interventional radiologist is to see on my issues, but hoping you make a full recovery.

 

[Stillsearching]

I only wish I lived in the U.S as here in Australia I'm not really sure on the "best" interventional radiologist is to see on my issues, but hoping you make a full recovery.

Anyone could work. Make sure to reach out!

 

[Michael01]

Anyone could work. Make sure to reach out!

I've got an appointment set-up in a few months so hoping for some good results. Wish it was sooner, but it's always hard getting in to see any neurologist.

 

[tiniturtle]

I had a stent placed as part of the treatment for my DAVF(s).