Tullio's Phenomenon

Discussion in 'Support' started by SueR, Jan 21, 2014.

tinnitus forum
    1. SueR
      Disappointed

      SueR Member Benefactor

      Location:
      Boston, MA
      Tinnitus Since:
      07/2012
      Cause of Tinnitus:
      ear infection
      went to neurology appt today. He did a very simple exam... testing for L/R equality in tone, some balance tests, listened to chest, back, neck.

      took a lot of notes on my account of what's going on, then I left with instructions to follow up with ENT and ophthalmology (about the pupil difference), and also with some vestibular exercises to improve balance. He said, depending on what ENT and Ophth say, could mean neurotology for a high-res image.

      I got home and he called to say he looked into it further, scratch ENT/Ophth, and go to neurotology for the high-res image to check for Tullio's Phenomenon.

      It's not the cause, but it's a symptom, so it's might narrow down the reasons for my conditions.
       
      • Like Like x 2
    2. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      Never have heard of this. Will check it out. Question: Will the testing results just point to what caused your T? Or will it lead you to treatments that can make it go away?
       
    3. SueR
      Disappointed

      SueR Member Benefactor

      Location:
      Boston, MA
      Tinnitus Since:
      07/2012
      Cause of Tinnitus:
      ear infection
      will testing result point to a cause? ans: maybe... it narrows it down a bit.
      will it lead to treatment? ans: depends on the answer to the first question, I suppose.

      actually having something observable helps folks understand that this isn't psychosomatic. Although I'm very opinionated about certain things, I'm also pretty relaxed and happy with my life (H has thrown a wrench into that...) I don't need attention, I don't LIKE attention. I pretty much like to go unnoticed. I don't have time for drama. This isn't in my head. I'd have proof of that! lol
       
    4. kasart
      No Mood

      kasart Member

      Tinnitus Since:
      02/2010
      Cause of Tinnitus:
      Unspecified
      I'd like to know what your Dr. suggested for this condition or tests. I also have Tullio's phenomenon with nystagmus from sounds - even using my voice along with the pulsatile tinnitus. At first one Dr. thought something to do with my semi-circular canals/dehiscence and another one says no. Very frustrating.
       
    5. SueR
      Disappointed

      SueR Member Benefactor

      Location:
      Boston, MA
      Tinnitus Since:
      07/2012
      Cause of Tinnitus:
      ear infection
      all the doc said was that they were scheduling me for yet another scan. they are just going to look for whatever isn't "normal", whether it be a tumor or some other problem.

      wish I had more info for both of us!
       
    6. kasart
      No Mood

      kasart Member

      Tinnitus Since:
      02/2010
      Cause of Tinnitus:
      Unspecified
      Did they or you have specific scans requested - e.g. MRA (arteries) or general CT? Remember the CTs produce a lot more radiation than MRIs. Pls let us know how it goes!
       
    7. SueR
      Disappointed

      SueR Member Benefactor

      Location:
      Boston, MA
      Tinnitus Since:
      07/2012
      Cause of Tinnitus:
      ear infection
      I had a regular CT then one with dye to see if there was a kink in a vessel causing the pupil thing.

      The next is an MRI - high res.
       
    8. Viking
      No Mood

      Viking Member Benefactor

      Location:
      Italia
      Dehiscence syndrome superior semicircular canal or DCSS

      In ENT exists within the inner ear disease whose symptoms, vertigo, tinnitus and hearing loss, may induce the specialist, mistakenly to make diagnosis of Meniere's Syndrome.

      The DCSS is a clinical entity characterized by the presence of a structural alteration of the superior semicircular canal (CSS) responsible for a wide variety of signs and symptoms of vestibular stimulation in conjunction intense sound (Tullio phenomenon) or stimulation of pressor not sound middle-ear or the cranial cavity (phenomenon Hennebert). The DCSS is the so-called "third window mobile", for which all the mechanical stimulation sound and / or pressor generally capable of activating the auger induce endolymphatic also flows inside the CSS, generating the onset of symptoms of dizziness

      Because of the lack of bone wall of the capsule labyrinthine symptoms may occur only vestibular (dizziness, feeling of instability after patient exposure to loud sounds, after physical exertion or after pressure on the external ear canal) since the mechanical stimulation exerted on the vestibular receptors may determining a state of imbalance chronic exclusively cochlear (hearing loss, autophony, tinnitus, muffled headset, hyperacusis) or clocleo-vestibular.

      The clinical manifestations of the disease may be different, and this may depend on the extent of the defect and the degree of functional impairment of the membranous semicircular canal. This disease may be due to alterations that occur during postnatal bone development, but is clinically manifested usually in adulthood, following, for example, of a trauma. Scientists can not exclude the genetic predisposition to the development of diseases and disorders of the vestibular patients with DCSS, this would also explain the existence of multiple dehiscence of the semicircular canals, clinical entities recently discovered.

      When symptoms are not particularly debilitating treatment of choice is the affixing of trans-tympanic drainage to reduce the movement of the tympanic membrane and ossicular chain and to reduce the pressure in the middle ear. It also invites the patient to avoid physical exertion, lifting, rigging compensation, diving, loud noises, pressure changes during air and can be prescribed in some cases benzodiazepines.

      In conclusion all the patients that come to refer to the observation dell'otorinolaringoiatra dizzy syndrome in the presence of hearing loss and / or tinnitus or patients who have been diagnosed with Meniere's Syndrome should be subjected to diagnostic protocol for the semicircular canal dehiscence syndrome top, to recommend appropriate therapy and improve the quality of their lives.

      Sorry for my poor english

      Best wishes deiscenza1.png deiscenza2.png
       
    9. SueR
      Disappointed

      SueR Member Benefactor

      Location:
      Boston, MA
      Tinnitus Since:
      07/2012
      Cause of Tinnitus:
      ear infection
      I have that condition, but not the symptoms. [in the US, it's often seen with the D towards the end of the acronym... SCDS... superior canal dehiscence syndrome]

      one thing to note: SCDS ususally doesn't have FLUCTUATING hearing loss. Mine's fluctuating and I don't have autophony. My SCD is worse in my non-Meniere's ear. Most people with SCD don't even know they have it, and it's only discovered post-mortem, with no record of hering issues.

      [That's according to my neurotologist and otologist.]
       
    10. Viking
      No Mood

      Viking Member Benefactor

      Location:
      Italia
      have placed an echo color doppler carotid sinus?
       
    11. SueR
      Disappointed

      SueR Member Benefactor

      Location:
      Boston, MA
      Tinnitus Since:
      07/2012
      Cause of Tinnitus:
      ear infection
      I don't know what you are asking. Has someone placed something in my sinus??
       
    12. Viking
      No Mood

      Viking Member Benefactor

      Location:
      Italia
      not in sinus. but CAROTID sinus!

      There is another possibility of vascular problem but not in the head but in the coil. Have you never heard fistula of carotid sinus? One symptoms of this pathology is the tinnitus. http://en.wikipedia.org/wiki/Carotid-cavernous_fistula

      It can be treated with hembolization.

      http://www.ncbi.nlm.nih.gov/pubmed/25415064

      http://www.ncbi.nlm.nih.gov/pubmed/25194854

      http://www.ncbi.nlm.nih.gov/pubmed/25105521

      Have you make an echo color doppler of carotid sinus and/or supra optic to evaluate the amount and correct of blood vessel?

      i am not asking about you have it, but to consider it to avoid error in your not clear diagnosys.
       
    13. 1MW
      No Mood

      1MW Member

      Cause of Tinnitus:
      ssnhl
      Menieres is a non existent-imaginery disease.
      When a word says a lot in reality says nothing.Thats the case "meniere".
      If you have symptoms that doctors don't know the cause call it menieres you can call it "I DONT KNOW" and you will be more serious and right.
      Is the same analogue as pain. Pain is only the symptom but the causes can be many.
      So menieres describes the symptoms not the cause.Endolymphatic hydrops is an urban myth much lower percentage than in reality is over-diagnosed by fool ENTs and believed by fool patients.
      In reality many with diagnosed as having menieres after become deaf and got a cochlear implant for hearing restoration surgeon saw other things in cochlea not hydrops but more bony mass and other types of lesions
      suggesting infection immune or autoimmune disease.

      SCD is a real disease and can be treated with surgery.
      Real example
      SCDS - The Musician who heard too much

      http://abcnews.go.com/Health/story?id=4436348
       
      • Agree Agree x 1
    14. 1MW
      No Mood

      1MW Member

      Cause of Tinnitus:
      ssnhl
      Any leaking or perylimph can give similar symptoms to tullio.
      The leaking can be in semicircular canal cochlea circle/round window etc.
       
    15. SueR
      Disappointed

      SueR Member Benefactor

      Location:
      Boston, MA
      Tinnitus Since:
      07/2012
      Cause of Tinnitus:
      ear infection
      I can't continue witht he conversation. People who say that Meniere's is not real doesn't understand that you can only confirm things upon autopsy. There is progress being made to test for and confirm Meniere's, but it's not there yet.

      Viking, I'm sorry, but I'm having a difficult time understanding your questions... Partly because it's technical and partly because of language barrier. I have a hard time mixing the two! (this is totally on me... if it was one or the other, I'd have a better chance of keeping up!)

      Yes, SCDS is a real disease, but the syptoms aren't the same as Meniere's (hearing loss but not FLUCTUATING hearing loss, for one)
       
    16. 1MW
      No Mood

      1MW Member

      Cause of Tinnitus:
      ssnhl
      @SueR Exists a clinical trial for ENTs that if they say in a patient that has
      meniere in one ear then they double the possibility patient to develop the same condition in other ear
      from psychological distress of knowing what is this disease.
      So forget it. there is no meniere.
      Many ents diagnosed me with meniere all was wrong at this time.
      I have perfect hearing in affected ear but i have a strategy when i feel worsening T
      i do a monitoring audiogram in my pc and immediately i shoot cortocosteroids + get good sleep.
      Iam not waiting the doctors because it would be too late for improvement.
      With this strategy i have relieved all symptoms with no futher damage until now.
      And i have recoved almost completely from 60db loss / vertigo and this time iam writting the message
      i have no T no H (iam not cured but perhaps steroids+nac+others work temporarily).
       
    17. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      To the best of my non-medical background, Meniere's disease is used to describe a disorder and not a sickness in itself. There may therefore be a multitude of etiologies which all lead to the same overall set of symptoms. Which, in fact, would be identical to tinnitus.

      Meniere's disease has a number of symptoms associated with it - some of them are pretty distinct:

      1) reverse ski slope hearing loss
      2) tinnitus
      3) vertigo (not dizziness)
      4) fullness in the ears

      The medical community has chosen to group these typical symptoms and associate them with what is called Meniere's disease (even if in fact there are various underlying reasons).

      MD is a serious disorder when all 4 symptoms are present. So serious, and without real treatment options, that OTO-104 has been given a fast-track by the FDA. I have seen an impressive amount of doctors over the past year (about 35 in total - and all over the world). One of them was the inner ear specialist, Dr. Wilden, and upon my first visit with him, he explained that some of his MD patients are so sick with vertigo that they vomit on the floor when they are arrive at his clinic for treatment.
       
      • Agree Agree x 1
      • Winner Winner x 1
    18. 1MW
      No Mood

      1MW Member

      Cause of Tinnitus:
      ssnhl
      right meniere is only symptoms description the real cause is unknown.
      So patient must search real cause because word meniere says nothing.
      For example lyme disease/syphillis can give exactly the meniere symptoms but can be cured with antibiotics.
      Autoimmune inner ear disease can give exactly these symptoms but can be manages with steroids.
      Eustachian tube dysfunction can give meniere-like symptoms in extreme cases.
      Allergies can give these symptoms. Poisoning from toxic substances.
      Vascular cause can give these symptom.
      Autonomous nerve system dysfunction can give those symptoms.
      but because doctors can not see inside the ear
      call all them meniere and hydrops but in reality the cause is more specific.
      because they can not find the real cause they can not treat them and for this reason call
      meniere untreatable.Many cases diagnosed early as meniere after heavy searching
      found real cause and cured or manage the condition much better.
       
    19. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      By the time a person has come that far in the medical system, those kinds of diseases will already have been ruled out. So I am afraid the specific underlying causes are more specific than you would perhaps like to think.
       
    20. 1MW
      No Mood

      1MW Member

      Cause of Tinnitus:
      ssnhl
      lyme disease is very difficult to diagnose because there are not reliable serology tests today (many false negatives). Example person with "meniere symptoms" was negative 2006 when symptoms
      began and positive 2012 when symptoms worsening treated with antibiotics after that and cured.
      Is clinical diagnosis and can take up to 30 years to diagnosed someone.
      The most remain undiagnosed just with symptoms because general doctors know very little things about this disease.
      You never will rule out lyme if you have not find another cause.
      Only fool general doctors rule out lyme with only a serology test and a simple historical report of tick bite or erythyma migrains.
       
    21. kasart
      No Mood

      kasart Member

      Tinnitus Since:
      02/2010
      Cause of Tinnitus:
      Unspecified
      I do not have Meniere's D.
      How is this evaluated? (which is defined as a "fistula(s)". I cover my right ear, talk and my eyes move horizontally uncontrollably to the right then down. I cover my left ear, do same thing and my nystagmus go towards the left and and then down. It's very tiring not being able to control eye focus or balance function when it occurs - I cannot use voice or chew anything crunchy to avoid the Tullio's P. symptoms. The chronic whirring T is debilitating.
      Is there a special scan using contrast at specific angles to help detect this? Specifically for ear canals? I do not know and no Dr. will discuss this. :banghead: but state there's no tests or imaging to detect fistulas in round or oval window.

      I've now realized Neuros. consistently order "Brain" MRIs which does not include all the inner-ear structures. They state later, they do not focus in evaluating "ears"! but to see if there's brain-related issues which is a totally different avenue. So what's exactly the most appropriate work-up for Tullio's? Special audiograms? Oblique-cut CT scans? MRI T1 or T2 of inner ear canals?
      Anyone able to assist? Thx you.
       
    22. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      That's it Kasart. That's that hole in the process between where an ENT will go and where a Neuro will go. This is the compartmentalization of medicine in action. Middle ear and its interface with the inner ear? forget it. Consigned to the fringe of non-profitability.
       
      • Agree Agree x 1
    23. Mad maggot
      Breezy

      Mad maggot Member

      Location:
      New zealand
      Tinnitus Since:
      12/2008
      Cause of Tinnitus:
      Unknown
      It seems to me the whole problem with getting a diagnosis with anything isnthat everyone is specialising and looking at only one area while forgetting that the whole body is connected. Your foot is connected to your eye by the leg, torso and neck etc. But doctors only look at one area on a scan because they specialise in that. Another one looks at another area because they specialise in this. And so many times they are missing places in between where the problem is hiding!n they are all suffering with tunnel vision.
       
      • Agree Agree x 2
    24. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      I see you're already here Mad one. Nice to see you into it.
       
      • Like Like x 1
    25. Well my new recent symptoms are fullness, increased tinnitus and then vertigo. Just great.
       
      • Hug Hug x 1
      • Informative Informative x 1
    26. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      I also have ear fullness sometimes, they are full of #$@#.
       
    27. what?
       
    28. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      Yeah man, my ears are shit too.
       
    29. " are " and " full of"

      ok. get ya.
       

Share This Page

Loading...
If you have ringing ears then you've come to the right place. We are a friendly tinnitus support board, dedicated to helping you discuss and understand what tinnitus treatments may work for you.