Tullio's Phenomenon

[SueR]

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.

 

[LadyDi]

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?

 

[SueR]

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

 

[sakrt]

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.

 

[SueR]

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!

 

[sakrt]

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!

 

[SueR]

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.

 

[Viking]

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

 

[SueR]

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.]

 

[Viking]

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.]

have placed an echo color doppler carotid sinus?

 

[SueR]

I don't know what you are asking. Has someone placed something in my sinus??

 

[Viking]

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.

 

[1MW]

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

http://abcnews.go.com/Health/story?id=4436348

 

[1MW]

Any leaking or perylimph can give similar symptoms to tullio.
The leaking can be in semicircular canal cochlea circle/round window etc.

 

[SueR]

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)

 

[1MW]

@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).

 

[attheedgeofscience]

So forget it. there is no meniere.

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.

 

[1MW]

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.

 

[attheedgeofscience]

For example lyme disease/syphillis can give exactly the meniere symptoms but can be cured with antibiotics

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.

 

[1MW]

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.

 

[sakrt]

Any leaking or perylimph can give similar symptoms to tullio.
The leaking can be in semicircular canal cochlea circle/round window etc.

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. 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.

 

[PaulBe]

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.

 

[Mad maggot]

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.

 

[PaulBe]

I see you're already here Mad one. Nice to see you into it.

 

[Street Spirit]

Well my new recent symptoms are fullness, increased tinnitus and then vertigo. Just great.

 

[dan]

I also have ear fullness sometimes, they are full of #$@#.

 

[Street Spirit]

I also have ear fullness sometimes, they are full of #$@#.

what?

 

[dan]

Yeah man, my ears are shit too.

 

[Street Spirit]

Yeah man, my ears are shit too.

" are " and " full of"

ok. get ya.