Pulsatile Tinnitus for Over 3 Years — MRI Found Nothing and I'm Getting Desperate

Discussion in 'Introduce Yourself' started by Tammyr, Aug 12, 2022.

    1. Tammyr

      Tammyr Member

      Tinnitus Since:
      04/2019
      Cause of Tinnitus:
      Unknown
      Hello everybody! First of all, I apologize for my bad English.

      I have had pulsatile tinnitus for over 3 years now (it's a really low bass toned whooshing in sync with my heartbeat) and it's getting worse and worse.

      I can control how loud the sound is with the positioning of my head (I haven't been able to sleep on the left side for 2 years now because the sound is getting too loud and I'm also getting dizzy.)

      If I look completely on the right, there's only a soft sound. If I look straight, it's medium. And if I look to the left, the sound gets extremely loud. If I press against the left side of my neck, the sound goes away.

      When it is really bad (I have it 24/7 but sometimes it's louder than usual), I also get tingling in the hands + feet and a tension in the head + neck.

      I already had an MRI of my head and got my jugular vein + ears checked but nothing was found. I also had a cervical MRI scan and there they found a cervical disc damage but I already got treatment (spine med) and the doctor told me that the chances are 95% that after that treatment my disc would be again there where it belongs.

      After 6 months I told him that my pulsatile tinnitus isn't better at all but he says it's too early to have another MRI.

      My neck still feels very tense but maybe it has nothing to do with the pulsatile tinnitus. No doctor can help me. I wanted to ask you all if maybe you have experienced something similar and if there's something else I could check?

      The sound is so bad. I need a loud ventilator next to me 24/7 to keep from going completely nuts. I would be very happy about any help.

      Thank you so much already,
      Tammy
       
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    2. Steph1710
      Old hag

      Steph1710 Member Benefactor Ambassador Hall of Fame

      Location:
      England
      Tinnitus Since:
      04/2020
      Cause of Tinnitus:
      Antibiotics - I think
      Hi @Tammyr :)

      What you are describing here is also the same as my pulsatile tinnitus which I’m currently on a waiting list to have an operation to help alleviate the sound.

      I had an MRI too - and it showed nothing. I then found out thanks to a brilliant website called ‘Whooshers’ that pulsatile tinnitus is extremely hard to diagnose with an MRI and what you really need is an angiogram with contrast dye to be able to see all the tiny little vessels in your neck/head that might be causing your pulsatile tinnitus.

      Also, you need to find out if your sigmoid sinus bone is missing. Mine was. It’s the bone which encases the main vein (sinus) which drains the blood away from your head. If this bone is missing, then you can hear the blood pumping past - hence you can hear the sound of your heartbeat. And that’s why if you press on your neck, you can stop the sound because you’re cutting the blood flow off.

      So, there could be a few issues going on. All I know is that you need to first look at the Whooshers website, then you need to try and have an angiogram with contrast, and you also need to see a neuro-radiologist because they can read the scans properly. Unfortunately, a normal ENT or neurologist cannot do this.

      Try and search for some of my posts about pulsatile tinnitus here on Tinnitus Talk. And go look at the Whooshers website. They can help you - and they have loads of brilliant success stories of people having a diagnosis and being treated successfully.

      Also, do you mind me asking what country you are in? Because it could be useful to try and find out if there are any specialists in ENT who specifically treat pulsatile tinnitus patients. I have one my country (England) called Mr Axon. It turned out he was one of the only doctors in the UK which specifically treats pulsatile tinnitus. I found out about him through the Whooshers website.

      And do not give up hope. What you describe seems to be a very common cause of pulsatile tinnitus, which is a blood flow issue - and the good news is, most of the time, it can be helped.

      But, I’m no medical expert - this is all based purely off my own research and experience.

      I’m happy to answers any questions you might have.

      Steph :)
       
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    3. Russell Grimes

      Russell Grimes Member

      Tinnitus Since:
      01/2022
      Cause of Tinnitus:
      Unknown
      It CAN be diagnosed and cured but many people never get that far because the medical system is broken. What did she say? The doctor said it is too soon for another MRI. If she had money or fame she’d be laughing in Cancun, PT free, with a a fruity drink in hand.
       
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    4. Steph1710
      Old hag

      Steph1710 Member Benefactor Ambassador Hall of Fame

      Location:
      England
      Tinnitus Since:
      04/2020
      Cause of Tinnitus:
      Antibiotics - I think
      I haven’t got a pot to piss in, but I’m on the waiting list for an operation - but only because I wouldn’t take no for an answer.

      Also, it depends what country you’re in. In the UK there is little to no hope. NHS is a rotten pile of shit.
       
    5. Russell Grimes

      Russell Grimes Member

      Tinnitus Since:
      01/2022
      Cause of Tinnitus:
      Unknown
      In the US it is necessary to keep pestering the doctors until they accede to one’s request or tell them to bugger off and find a new doctor. People are their own best advocates and need to learn to not take no for an answer. Glad you are on a waiting list and hope it isn’t too long.

      Your pulsatile tinnitus poses no direct danger to your physical health though, right? You are having the surgery electively because of the emotional and psychological toll the condition is exacting upon you. I like watching shows from the UK. I used to binge watch Supersize vs Superskinny.
       
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    6. Stuart-T

      Stuart-T Member Benefactor

      Tinnitus Since:
      02/2022
      Cause of Tinnitus:
      Ear wax or COVID-19 infection
      Over my lifetime I have found the NHS has delivered more or less when I needed it. We live in a sickly nation and since healthcare is free at the point of delivery and as people are living longer WITH multiple conditions - it is naturally in huge demand.

      My stepmother was dying of cancer. In the last few years they got the cancer out - chemo etc - and now she is doing ok.

      There are waiting lists and since tinnitus more or less does not kill anyone - I expect operations are not a high priority.

      It sucks I know. But as I also have no money for private healthcare OR healthcare insurance - I would rather be living here than in the USA.
       
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    7. Russell Grimes

      Russell Grimes Member

      Tinnitus Since:
      01/2022
      Cause of Tinnitus:
      Unknown
      In the United States people who receive mental or physical disability also receive free healthcare. They receive care just as good as those in the middle class and probably better because it costs them nothing, not even for expensive medications and advanced tests and they can keep scheduling doctor appointments pretty much at will. That said, it is still difficult to get expensive tests without a referral from a doctor and there is sometimes poor continuity of care.
       
    8. Steph1710
      Old hag

      Steph1710 Member Benefactor Ambassador Hall of Fame

      Location:
      England
      Tinnitus Since:
      04/2020
      Cause of Tinnitus:
      Antibiotics - I think
      I am truly happy that they have managed to deliver what you needed. You are very lucky. :)
      The NHS are incredibly good if you are dying - if you are not, then it’s another story.
      And that’s amazing they done for your stepmother. You must have all been extremely grateful for their help and support. <3

      My friend died recently. He was a rock climber, in good shape and looked after himself. He had a weird pain in his side. He went to the doctor multiple times asking for a scan. They refused. Said to do some physiotherapy instead because it was more than likely muscular. He paid £800 for a private MRI - it was cancer. He was told it was too late to do anything, but if they had caught it earlier, he would have had a high chance of survival. He wrote a letter of complaint once he found out... needless to say it was fruitless. :(
      Did you watch the BBC Panorama programme about the NHS - it was on last year, I think?
      This is something I repeat - what’s the point in it being free if they won’t do anything to help?
      I completely agree. But, when people like my neighbour who had to be driven to A&E to have his toe amputated because it had gone gangrenous as he couldn’t get a face-to-face doctors appointment so someone could look at it and administer him some antibiotics, then I think it’s time something is done to help, because that story right there highlights how bad NHS has gotten.

      However, with all that being said, I have had good experiences as well. I am proud of the NHS, I am just sad and angry about it’s current state. :( And I just wish all those wonderful doctors and nurses who go above and beyond to help us, would receive the funds and resources that they require.
       
    9. Stuart-T

      Stuart-T Member Benefactor

      Tinnitus Since:
      02/2022
      Cause of Tinnitus:
      Ear wax or COVID-19 infection
      Hey Steph, thanks for your detailed reply. I also know of bad things which have happened in the NHS and indeed the NHS pays out a fortune in compensation claims. I am very sorry about your friend. I think they probably work on averages and I guess if I went in with a pain in my side they might also think it is muscular. They don't have the resources to MRI every single person who has a pain in the body. This means some will die sadly due to late diagnosis. I expect if it was America the insurance people would be refusing to authorise an MRI. American private hospitals pay out in compensation even more than the NHS, per capita. Monthly insurance costs for a family of 4 can easily be $800 a month and then everything needs to be authorised.

      So the NHS is far from perfect and does struggle at times and makes mistakes. Sadly for us - the NHS is particularly hopeless at dealing with tinnitus as is virtually every other health service. My mum has IBS - and they can't help her either except prescribe drugs which make her feel ill - so it is not just tinnitus - many conditions leave them stumped.

      I hope when your turn comes around for your operation it will bring you relief.
       
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    10. Stuart-T

      Stuart-T Member Benefactor

      Tinnitus Since:
      02/2022
      Cause of Tinnitus:
      Ear wax or COVID-19 infection
      Thanks - I am relieved for those groups. I lived in France for a little while where you have to pay 30 EUR to see a doctor. You can claim this back but it is time consuming so I never did. Having said that I was satisfied on the one occasion I needed a doctor there - I had a very painful build up of pus inside my thumb and the side of the nail. The doctor cut it open and let the pus out - disinfected and dressed it and it healed up in about a week. I was really impressed. I could not imagine a UK NHS doctor doing that. I would have been sent the hospital and had to wait in the emergency room - or maybe prescribed antibiotics. Apart from that I never paid for healthcare directly.
       
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    11. Steph1710
      Old hag

      Steph1710 Member Benefactor Ambassador Hall of Fame

      Location:
      England
      Tinnitus Since:
      04/2020
      Cause of Tinnitus:
      Antibiotics - I think
      Thank you Stuart. You seem like such a kind soul. Instead of getting defensive about the NHS, like some on here do, you offer a well rounded, unbiased perspective - and I appreciate that.

      Hope you have a good evening, I’ve just finished a nice swim.

      Steph x
       
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    12. NYCGuy
      Suicidal

      NYCGuy Member Benefactor

      Location:
      NY
      Tinnitus Since:
      10/2021
      Cause of Tinnitus:
      Neck, Jaw or Stress, who knows.
      I also suffer from pulsatile tinnitus. I did an MRA/MRV of my head and neck and I was checked by Dr. P, one of the best doctors for pulsatile tinnitus in New York City. I went to this doctor due to Whooshers website recommending him. He is a pioneer in pulsatile tinnitus surgery. He didn't find anything and said 25% of cases of pulsatile tinnitus never get a diagnosis.

      He also said TMJ can cause pulsatile tinnitus and I think I can confirm mine was due to TMJ and neck.

      I do have more than pulsatile tinnitus now. The other tinnitus is so loud that I barely hear my pulsatile tinnitus now. I have high pitch tinnitus in my left ear and pulsatile tinnitus, morse code, beep tinnitus and TTTS in my right ear.

      I do suffer from 24/7 ear clogging, and clicking in both ears everytime I swallow.
       
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    13. Steph1710
      Old hag

      Steph1710 Member Benefactor Ambassador Hall of Fame

      Location:
      England
      Tinnitus Since:
      04/2020
      Cause of Tinnitus:
      Antibiotics - I think
      Did they not offer you an angiogram with contrast dye? Because I was told over here (UK) that the only real way to see all the tiny little blood vessels in the head and neck is by angiogram. They are the best scans to see if there is any abnormalities - even the tiniest, tiniest ones. Apparently, and MRA/MRV isn’t efficient enough/clear enough to pick up small abnormalities.

      That’s why I always tell people to push for an angiogram with contrast.
      I think a team which includes a neurological surgeon as well as an ENT who specialises is important when it comes to pulsatile tinnitus - I pushed for both.
      Damn! Well I guess that is the case for some people. :( I think mine was quite clearly a blood flow issue because if I press on the side of my neck, it stops the sound. Also, every morning I wake up and be sick because I have so much pressure in my head. And intracranial pressure is also a cause of pulsatile tinnitus - which again is a knock on effect of insufficient blood flow around the brain. So, all my issues where very clearly linked.
      I know that all too well. My pulsatile tinnitus is a breeze compared to my “normal” tinnitus which I developed after my pulsatile tinnitus. I have multi tones which are different in each ear. Daily fluctuations and a lovely bit of hyperacusis to top it off. Aren’t we lucky! Haha!

      But jokes aside, the reason I pushed for a pulsatile tinnitus diagnosis for so many years, is because of how ill I am with my symptoms because of all the pressure in my head. I live with daily migraines and feeling sick 24/7. It’s nice that something is being done for me, but it hasn’t been easy. It’s taken since 2018 to be taken seriously, and during that time I have been pushed from pillar to post and written multiple complaints. I even wrote a letter with instructions and a diagram on what needs to be done to help - because in the UK, ENTs over here, don’t even understand or know of pulsatile tinnitus, let alone what causes it. It’s been a long and stressful battle. But, my whole life has, so this is nothing new. It’s just a damn shame that it’s taken since 2018 for them to agree to help.
      I honestly can’t remember the last time my ears (especially the right) didn’t feel clogged. Gave up trying to pop them. Ended up giving myself a whole new tone by doing that. (y)
       
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    14. Russell Grimes

      Russell Grimes Member

      Tinnitus Since:
      01/2022
      Cause of Tinnitus:
      Unknown
      I am waiting to see a neurointerventional radiologist. I have had pulsatile tinnitus for seven months and think that is too long to go without a diagnosis. You have been fighting for four years. You must have had moments of hopelessness and anger.
       
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    15. Steph1710
      Old hag

      Steph1710 Member Benefactor Ambassador Hall of Fame

      Location:
      England
      Tinnitus Since:
      04/2020
      Cause of Tinnitus:
      Antibiotics - I think
      That is one of the best people you can see!
      Unfortunately in the UK, this is the norm. I waited for 7 years for a knee operation because they wouldn’t give me a scan. They kept on telling me it was just a sprained tendon. As soon as they finally scanned it, after many complaints from me, they booked me in for an operation the following week because they saw the knee was buggered. This was back in 2016.
      Oh, I forgot to comment on this the other day. My pulsatile tinnitus is caused by blood flow issue. The main veins which supply blood to the brain are narrowed. This also causes my spinal fluid to back up and flood the brain, which causes me constant pain and sickness. Over time, this can cause all sorts of issues - like vascular dementia.
      So unfortunately, this goes far beyond emotional psychological trauma. This is a very real and painful condition.
       
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    16. Russell Grimes

      Russell Grimes Member

      Tinnitus Since:
      01/2022
      Cause of Tinnitus:
      Unknown
      Like you I have neck stiffness and something undiagnosed going on with my spine and I feel almost certain it is the culprit of my problems.
      I always see people post they can stop the sound by pushing their neck. If I push in the area of my neck or jaw I get a high-pitched hiss that turns to pulsatile tinnitus if I maintain pressure. My pulsatile tinnitus is pretty quiet at rest but crescendos loudly with sudden movement.
      Does spinal fluid ever come out of your nose? I get clear secretions from one nostril sometimes, primarily in the morning. It could be allergies but I am always paranoid it is a spinal fluid leak.
       
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    17. Greg Sacramento

      Greg Sacramento Member Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      04/2011
      Cause of Tinnitus:
      Syringing + Somatic tinnitus from dental work
      @Russell Grimes, hello again. Good luck with your upcoming interventional neuroradiology appoinment. A scheduced audiogram may be needed. We have seen many with your history and I also have much of the same. I don't think your situation is dangerous. Pulsatile tinnitus could be caused by something else from what I will discuss, but less often with having either tinnitus or somatic tinnitus.

      A vascular problem caused by hypertension could result in narrowing of the vertebral arteries. I've posted a lot about hypertension crisis pulsatile causing (neck, heart, abdominal aortic aneurysm and eyes problems) as well as physical C2 and C spine causes.

      A neck injury could cause compression to the vertebral arteries. Posture injury is more likely than hypertension with having Eustachian tube concerns, TMJ problems and sore neck. C spine straightening from posture injury could be a cause of this. A cylindrical pillow would help to curve the C spine, thus taking pressure off the vertebral arteries and curing pulsatile tinnitus.

      The vertebral arteries are near the C spine. If hypertension caused pulsatile tinnitus, then you would probably also have carotid arteries concerns which you don't have as noted by a MRA. Verterbral arteries are best noted by an audiogram. Besides possible C spine pressure to verterbral arteries, high riding varient of verterbral arteries at C2 could also associate with TMJ and Eustachian tube.

      You probably know all about a high riding jugular bulb. This is often left alone unless pulsatile tinnitus is very bothersome.
       
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    18. Greg Sacramento

      Greg Sacramento Member Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      04/2011
      Cause of Tinnitus:
      Syringing + Somatic tinnitus from dental work
      When interventional neuroradiology notes a normal ipsilateral internal jugular vein per MRI from what you describe with having pulsatile tinnitus, they request a pure-tone angiogram to see if patient has low-frequency hearing loss. If so, this implicates a venous source often being the cochlear aqueduct or canaliculus which is a small canal in the body labyrinth of the petrous temporal bone that contains the perilymphatic duct, which drains perilymph into the cerebrospinal fluid of the posterior cranial fossa subarachnoid space. This runs parallel to the internal auditory canal - base of cochlea. This can't be visualized on CT and is most difficult to see by MRI. What can be seen is the medial end at jugular foramen. An interventional radiologist is best to note this. You could have a second MRI review for this done by the radiologist that did your study, but CT is best. A very simple outpatient procedure is needed.
       
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