Any Pulsatile Tinnitus Experts/Doctors in Australia?

Discussion in 'Support' started by Ian Mc, Jan 6, 2020.

    1. Ian Mc

      Ian Mc Member

      Tinnitus Since:
      April 2019
      Cause of Tinnitus:
      Unknown Pulsatile Tinnitus
      Hi , I'm wondering if anyone in Australia would know of a medical person (in Australia) who has a good knowledge of Pulsatile Tinnitus?

      The reason I ask this is because I am from South Australia and have exhausted all hopes of having an MRA or MRV carried out in this state.

      The doctors and ENT's that I have seen are telling me that "all is well" and won't authorise any further imaging (to date I've had an MRI (non contrast), a carotid ultrasound and a CT of the temporal bone area. The CT scan showed a left dominant jugular vein (apparantely the left jugular is like a super highway compared to the right jugular which is like a narrow back road, the ENT feels that this may be the sound that I am hearing in my left ear?)

      It looks like I will have to travel interstate in order to find a medical person who not only has a knowledge of PT but also a knowledge of the imaging required to diagnose the source of the PT. Would anyone who can assist me with this?

      Thanks,
      Ian
       
    2. tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      Research interventional radiologists in under neurosurgery departments, neuro-interventional radiologists or interventional neuro-radiology. The term is kind of interchangeable based on locale. These are the doctors that can evaluate, diagnose, and treat you. Most cases of PT are curable, and you want to have it evaluated to make sure you don't have something dangerous happening. Mine was, and it was also cured. I don't have an knowledge of anyone in Australia, since I'm in the US. But I'm a good researcher and could consult Google if you wish, and at least get you a start. It's important to find a good one, so you should research cities and university hospitals.
       
    3. Shreya
      Frustrated

      Shreya Member

      Tinnitus Since:
      02/2020
      Cause of Tinnitus:
      unknown
      Hi @Ian Mc
      I am a 29 year old student from Melbourne. I am having PT in my right ear for sometime now. I would like to know whether the doctors finally diagnosed you in Australia? I have an upcoming appointment with an ENT and want to make the best use of it. I am waiting for my brain CT result. Please let me know.
      @tiniturtle
       
    4. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      The left jugular vein need compression narrowing usually > (greater) than 50% to cause PT or PT thumping/humming sounds. This can be noted by color ultrasound.
       
      • Like Like x 1
    5. AUTHOR
      AUTHOR
      Ian Mc

      Ian Mc Member

      Tinnitus Since:
      April 2019
      Cause of Tinnitus:
      Unknown Pulsatile Tinnitus
       
    6. tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      • Like Like x 1
    7. AUTHOR
      AUTHOR
      Ian Mc

      Ian Mc Member

      Tinnitus Since:
      April 2019
      Cause of Tinnitus:
      Unknown Pulsatile Tinnitus
       
    8. AUTHOR
      AUTHOR
      Ian Mc

      Ian Mc Member

      Tinnitus Since:
      April 2019
      Cause of Tinnitus:
      Unknown Pulsatile Tinnitus
      Hi Shreya,
      I was unable to get a diagnosis in South Australia which is why I am searching for a "good doctor" in Victoria, I have had low volume PT in my left ear for 9 months now. It is more of a thump thump rather than a whoosh whoosh. It changes in volume when I change neck position. If you find a good doctor I would love to hear about it. Thanks
      Ian
       
    9. Shreya
      Frustrated

      Shreya Member

      Tinnitus Since:
      02/2020
      Cause of Tinnitus:
      unknown
      Thanks @tiniturtle. Yes I did see your post, thanks for the nicely written piece of information. Just that, I have not been able to convince my doctor to get an MRA / interventional neuro-radiologist right away. So trying to understand how to approach.
      Also, can the PT come and go? Can it become worse over time? For me ,when it initially started, it was continuously very loud. Now I feel the loudness has decreased somewhat over 2 weeks. But I am getting headaches (lower back side), no idea whether it is related. I have told my doctor all this. Just waiting for the ENT surgeon to have a look and refer me or order further tests.

      @Ian Mc I am very sorry to know that you are still suffering. Sure, I shall let you know how I go with the diagnosis. As of now my brain CT does not show any abnormality.
       
    10. tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      Yes, it can vary wildly, and come and go, change based on position, etc. The problem is, the intensity of the PT does not match the severity of the underlying problem. You can have very loud intrusive PT, and have it be fairly benign, or you can have it vary and then disappear like mine did, and have a life-threatening issue. That's why it's important to get it checked out if you're having the symptoms at all. When mine disappeared, I was on the verge of a brain hemorrhage and I didn't even know it.
       
    11. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @Shreya
      There are many professional links on considerations and how to proceed when hearing pulsatile sounds. Age is one consideration, along with hearing sounds in one ear or both, blood pressure results, hands on pulse testing, EKG, blood work tests, personnel history including injuries, family medical histories and does one have blood pressure hypertension, headaches, off balance and dizziness or vision problems.

      The best advice that we can give here, because of possible involvement is to say talk to your doctors, and say hey I have a problem and I want to know why. Most insurance and medical plans will not let someone see a specialized radiologist or other specialized doctor without referrals and before referrals are given much of the above is often considered first.

      At your age, many possible causes may be of less suspect such as vein and artery disease and enlarged abdominal aortic enlargement. Hypertension - blood pressure can be a cause at any age. Some doctors including neurologists and vascular will order ultrasounds of the carotids, internal jugulars and thyroid first and some will go ahead with MRAs - especially if balance, dizziness, headaches and/or vision problems are present. Hypertension - blood pressure can cause all these issues.

      I agree with another poster that MRAs should be given as well and that interventional radiologists are often needed. Not only for ones with pulsatile sounds, but also for ones with physical problems and more so for any problems above the shoulders.
       
      • Genius Genius x 1
    12. Mac2050

      Mac2050 Member

      Tinnitus Since:
      2018
      Cause of Tinnitus:
      Blood Pressure Medication, anxiety
      @tiniturtle
      Hi guys, my tinnitus first started after my car accident. It was a very faint pulse in my head along with a noise in my right ear. MRI and other tests were all normal, except a mild hearing loss in right ear.
      I don't feel the pulsation all day except some hours in the day and varies in frequency. I don't feel the pulse for atleast an hour after my gym workout and or cardio workout.
      Do you think the pulsatile can be treated in my case? MRI and Cartoid tests did not reveal anything?
       
    13. tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      Much of the time, those tests won't show anything. MRI usually won't indicate something like a davf unless it's rather significantly large. MRA is generally the more sensitive and appropriate imaging study. They are usually done together. Just to give you an idea, before my last angiogram, we did an MRI and MRA, which were "normal". With cerebral angiogram, two small fistula were detected that weren't able to be seen on the former imaging studies.
       
    14. Mac2050

      Mac2050 Member

      Tinnitus Since:
      2018
      Cause of Tinnitus:
      Blood Pressure Medication, anxiety
      Thanks for your reply and I am glad you are now completely OK and stay that way for ever.
      Mine pulsatile looks like curable since its not high pitch all the time and I can change by certain movements of my head. I also have somatic type in the right ear which is a very high pitch and ENT specialist just glanced at the MRI report and said its due to mild hearing loss and nothing can be done about it.
       
    15. Shreya
      Frustrated

      Shreya Member

      Tinnitus Since:
      02/2020
      Cause of Tinnitus:
      unknown
      Hi @tiniturtle @Greg Sacramento
      I am just so overwhelmed. The ENT specialist says there is apparently nothing wrong. He will ask for more scans only when he finds something more severe and told me to go back to him if problem persists for another month. Gave some meds if I felt dizzy. My CT was full brain but it said temporal bones and sinuses are okay. My blood pressure and audiogram are okay. I have had a renal stone in the past.
      Meanwhile, I could not hear the sound at all for 3 days again and then it came back this morning. VERY loud thumping in the right ear, followed with the sound for around 1-2 mins. Then kept going and coming back for some time as before. When I told the doctors that I found females of my age are the most affected by SSWAs according to recent papers, they dismissed the statement. Most people I have talked to say that I am stressed and it is nothing. I should relax etc etc. As it is a rare problem, people's attitude make it more difficult to deal with it. Mostly when doctors say the same. They have asked me not to google as that is what is stressing me out. I am at a loss of words.

      I have the following questions:
      0. How do I get to see a neuro-specialist without a referral in Australia quickly?
      1. I just want to know that a head injury is not the only cause right? The vascular issues can be caused otherwise?
      2. Is it at all possible that there is no underlying vascular issue in unilateral objective pulsatile tinnitus?
      3. How long did your sounds persist before you were able to get a diagnosis?
      4. How often would the sounds go and come back?
      5. Were there any other symptoms (dizziness/ drowsiness / headaches etc)?
      6. Did the sound change into thumping ever?
       
    16. tiniturtle

      tiniturtle Member

      Tinnitus Since:
      3/19/2017
      Cause of Tinnitus:
      Paromomycin
      @Shreya

      First, I will say you should have an MRA and see a neuro-interventional radiologist, with that said I will move on to your questions:

      0: I do not know. I'm in the United States, and with my health insurance, I did not need a referral. But, my GP had also helped me get imaging and a diagnosis before I saw one. Do a little research on your end. I wish I could help more with this. Your GP or Primary doctor should be helping you with this. If they aren't, maybe you need a new doctor.

      1: Head injury is not the only cause. These can happen without any apparent cause. Actually, most are idopathic, that is, no known cause.

      2: Yes, it is possible. However, the overwhelming majority of cases of PT are vascular in nature, especially with the type of symptoms you describe. With that said, that does not mean they are all dangerous. It can be benign. Don't stress.

      3. I'd say it was about 4-5 months from when I first started noticing the symptoms, to diagnosis. Unfortunately, there was a delay in diagnosis, because like you, it was blown off at first, until it persisted for a long time.

      4. It is very inconsistent, which is common. It could be very loud, faint, change by position, gone temporarily, etc. This is actually classic as far as symptoms go. It did disappear on its own at some point, but I may have explained this before, in my case that was a very bad thing, that's when the vein shut down and it became very dangerous for me. The fact that it stopped was the most concerning symptom to my neurosurgeon.

      5. Dizziness, fatigue, specific left sided headaches that were fairly sharp. They would come on quickly, last a few minutes to maybe 15-20, then go again. But they consistently came and went like that for weeks. I would get weird sensations in a specific spot in my head, like something pressing there, or squirming.

      6. Yes, at times it was a thumping. Almost like hitting a drum.

      Please get this checked out. I know you're working on it. IF you did have something like a dural fistula, they take some time to get to a place where they cause real harm, and most are easily treatable now. Don't worry and get yourself upset without having good reason to. Also remember that ENT are not qualified to evaluate for these issues.
       
      • Like Like x 1
    17. lotte

      lotte Member

      Tinnitus Since:
      03/2015
      Dr Sean Flanagan and Prof Paul Fagan have both published on the disgnostics for PT although they are ENTs. They are at St Vincents and if anything can help getting you referred for appropriate testing
       

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