I am a 63 year old man that was diagnosed with cochlear hydrops about a year ago. I
was driving around in semi-mountainous country when I suddenly developed a sensation of
fullness in my left ear along with a low pitched roaring sound and muffled hearing.Even
my own voice sounds muffled. There was no vertigo.The first ENT doctor I visited gave me what
appeared to be a thorough clinical exam, an audiology test, put me on prednisone for 10 days
and ordered an MRI with dye of my inner auditory canals.Both the exam and the MRI did not reveal
anything. The audiogram did show a moderate amount of low frequency hearing loss and the tympanogram
was a normal type A. No other tests were performed and I was told I had cochlear hydrops.Several
months later I began to develop a real sensitivity to sharp loud noises, crowds, restaurants,
ball games, dishes clanking, etc. I also noticed that any kind of pressure applied to the ear canal
(such as the tympanogram) or pushing in the ear canal with my finger resulted in a very odd feeling along
with occasional sharp pain deep within the ear. I saw another ENT doc to get a second opinion. He felt I
did not have cochlear hydrops and that it might be a small piece of plague in one of the small arteries
within the inner ear, but admitted nothing was seen on the MRI. I saw yet a third ENT doctor.
I described a new symptom which could only be described as having my ear injected with lidocaine and
that it was wearing off. He said that was classical for meneire's disease? He agreed with the first
ENT and felt I had cochlear hydrops.I was put on a low salt diet, underwent a 3 month trial of
diuretics and have stayed away from caffeine. None of this has helped.
When I discussed this with my family doctor he ordered a head/brain MRI and an MRI of my neck.
Both returned without any significant findings.He also ordered blood tests which included an
ANA screen, Cryoglobulin, ANCA, Myeloperoxidase Antibody, Protein 3 antibody, Rhumatoid factor,
Sedrate, Auto Diff, Hematology, metabolic panel,CBC, General Chem, GFR and TSH. All came back
within normal limits.Not being a doctor I don't know, but feel I have been thoroughly checked.
All of these symptoms have been constant 24/7 and I have only rarely had anything that could
be described as vertigo.
Has anyone else experienced similar symptoms? Does this really sound like Meneires disease?
I am certain I don't have an STD and I doubt I have Lyme disease. Are there any other tests
I should request? Thanks so much.
I appreciate all input regarding my symptoms. I have done a lot of reading up about them and understand there are a lot of people with similar symptoms but most all of them have some kind of vertigo component, which I do not. Since my symptoms are constant and not episodic I have to wonder how accurate my diagnosis really is. After
all the tests I've had done I have a list of things not wrong, but still can't identify the real etiology. I am seeing an allergist in a few weeks just to rule out that remote possibiity.
My family doctor initially thought it was eustachian tube dysfunction, but supposedly the tympanogram ruled that out. Also a 2 week course of Claritan didn't do anything either.
Just a side note about symptoms listed in any texts... My SSCDS has a vertigo symptom, however, I personally don't have any balance problems nor do the majority of people with this defect. Yet, again, the texts all say it is a part of the problem. I can only assume this is true with all other problems, they will list symptoms that some may have and make it sound as though it is an integral part of the problem.
Most of the time, If you have SSCDS in one ear, the bone is also thin in the other ear if not dehiscent. I.E. Yes. Many members in a support forum for this (unrelated to medhelp) have symptoms in both ears, bot not all members. This is not a diagnosis of your ear problem, just an observation with the mentioned symptoms.
BTW: I just learned that SSCDS, although is one of the correct abbreviation, it happens to be the same abbreviation for many other things including a Chemical Dependence. Interestingly. So, I guess I should give the full name... Superior Semicircular Canal Dehiscence.
I appreciate your sharing your experience with me. Do you have any suggestions on how I might convince an ENT doctor who has already diagnosed me with cochlear hydrops to test me for SSCD? Did you have the surgery to help with this problem? Do you feel it helped?
Again, don't think I know something, because I don't. Or should I say, don't assume that I think you have SSCDS. I'm just making an observation and a suggestion from what I have read. Your Dr. may be absolutely correct and I could be absolutely wrong..
I'd ask if he eliminated the possibility of SSCDS, I'd also ask what other possibilities he has tested for. If he asks what SSCDS is, then you can educate him, make him feel foolish, then ask for a free hearing test(?).
A ~512hz tuning fork placed on the skull, or any bone but best to start with the skull. If you hear the sound "coming OUT of the ear", there's a good chance you have this. There are a couple other tests he can do in the office but I can't think of them right at this moment. The big test would be what I mentioned above, a high resolution CT scan. If the tests he does in his office doesn't point in that direction then he may be right with the hydrops, or mariners, or anyone of the others the Dr.s suggested.
Went over CT with ENT doc today. No sign of SSCDS. Blood tests for Lyme and STD negative.The mystery continues. Wants to put me on a third round of diuretics, which to date have done nothing. Note that symptoms ease up a bit in the morning and get worse in the evening.ENT doc stubbornly insists I have meneires. Need to see yet another ENT doc. He couldn't answer why my symptoms are constant 24/7 as opposed to episodic.
Decided to see yet another ENT doctor, this one a neurotologist with vast skull base tumor expertise. He ordered an ENG and a food allergy test. The food allergy test came back unremarkable (as expected) but the ENG showed a weakness in the affected ear. Maybe this is the closest test I have had to confirming meneires syndrome yet. Despite this I remain skeptical of the diagnosis.
initially fluctuating hearing loss in the lower frequencies, translating into some impression of distorted hearing, mumbling low frequencies. fullness in the inner ear. no vertigo.
it would initially only appear in the morning, then recover to normal, later to almost normal - and now, after 4 weeks, it does never recover anywhere close to normal. plus it is also effecting mid frequencies around 2kHz and the very high frequencies now >10kHz. feels like a wearing-out of the ear.
can´t follow conversations in noisy environments anymore.
the background roar of the city is especially bad - it "feels" like it is masking any other sound.
medication: a round of betahistin, vitamin b12 and e, magnesium, dusodril - to no avail.
i had this earlier, 8 years ago, it lasted for 6 months and then magically disappeared. it has never been found out what the reason was.
for me it would be interesting to hear, whether common durations for this condition can be established. its hard to come by any descriptions of durations of symptoms of non-vertigo related endolymphatic hydrops.
I am a 56 year old female who has been reading your blogs. Do you have current info? I have the exact same trouble. The only cure has been Prednisone. I have cut out all caffeine, chocolate, and drink tons of water. Have been taking "ear health" vitamins for circulation.
Any new help?
Being my own health care advocate I had not given up finding answers.
In Dec of last year I saw a very helpful neurologist who performed a spinal tap. He did this because my symptoms included a pins and needles sesastion in my feet. It is peripheral neuropathy likely causing the problem in my ear. Unfortunately, unlike many others my PN is NOT idiopathic. It turns out I have a rare incurable blood cancer called Waldenstrom's Macroglobulenemia ( a form of non-hodgins disease). I am currently undergoing chemotherapy for it with a promise it may lead to symptom improvement. While this is not likely to be your cause of symptoms it might be worth the time to have something like this ruled out. Good luck.
I am a 62 year old man and this sounds EXACTLY like my symptoms staring in January of 2012. Only in June in addition to those symptoms I stated to have balance and disequalibrium problems (no rotational vertigo)as well. So much so I had to go on and still am on Short Term Disability. I too have gone thru many doctors and had a myriad of tests. (VNG, MRI, MRA Audiogram, etc) My left ear is the problem as well. I am currently having physical therapy on my neck to see if that is the problem (Cervigogenic Dizziness) but so far no relief there as well, even though the symptoms are the same. My level of fuctionality varies from day to day, from barely being able to walk from room to room, to being able to ride my bike, take long waks go to stores etc. But there is no telling what each day will be like. Needless to say, my nerves are shot and fear and anxiety are now playing a bigger roll. I spend a great deal of time (now that I am not working) on the internet trying to find what may be a solution to help the doctors nail down a firm diagnosis. It is time consuming and frusrtaing and the prospect of this becoming a long term problem is very frightening. I too was suggested a low sodium diet but did not see improvement and the diuretics I stopped as they gave me postural hypotension and I passed out. Luckily it was at home and no serious injury was sustained.
I have this as well. I have hypercusis, tinnitus, and diplacusis, or hearing one thing in my left ear and something else in my right. I am filled with anxiety and depression over this. The only way I can cope is to plug up the bad ear. I pray that I wake up some day and it is gone. This is truly a curse.
I also have hyperacusis in both ears, in that certain loud sounds are very irritating and almost painful. Lately I've had some sinus issues and have been wondering if there might be a connection. Have had these symptoms for four years now constantly. Hoping to find something other than meneires which the docs admit there is not much they can do to help with that.
When a battery of tests can find nothing specifically wrong it makes it hard to get relief.
I was diagnosed with cochlear hydrops. I got my primary care doctor to give me Acyclovir since I read on the meniere talk forum that it has help people. It's very possible a virus could be causing this. I'm in my third week on Acyclovir and my hearing clear up after one week. I'll be on it for another month or so. Go over to http://www.menieres.org/forum and look in their "database" and see how some people are getting relieve from their symptoms from using anti-viral medications.
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