Hi Graham,

I am a 62 yr old grandma who suffers from classic Meniere's Disease. It affects the fluid in the inner ear is chronic and has many symptoms. All that can be done is to treat the sysmptoms. On December 22, I had the Baha implant surgery. I will not receive the device until March 22, but it the rod is touch with something hard I can hear it. I am very excited and can hardly wait until March. I wish you the best in your outcome.

Sincerely,

Bonny

Hi Graham. I can really sympathise with you in your dilemma - no-one knows what deafness is like until it happens to them. Briefly, I have had glue ears since the age of around 42 (I am now 70) and after having gromets and t-tubes in both ears 13 times in the follwing 14 years I had a particularly awful bout of spinning(more awful than usual) and ended up with the cochlea in my right ear being destroyed.I lost all the balance in that ear and then shortly afterwards I lost most of the hearing in that ear. I was eventually given a hearing aid but it is very little use as there is nothing in the ear to convey the sound to my brain. My head is totally topsy-turvy but my brain has learned to cope with it (not much choice really). I hate to think what I will be like if it happens with the left ear. I have often wondered how people manage with cochlea implants. I once saw a telly programme of someone being fitted with one and I cried when I saw the joy on the person's face at being able to hear again. I wish you SO much luck in this and hope everything turns out well for you and your lovely family. Kind regards. Vera Perry.

Finally found a cure for my disorder - so I'm sharing with as many people as I can in the hopes it will help.

In 2006 I suffered a 60db single-sided sudden sensorineural hearing loss, followed later by vertigo attacks and a diagnosis of Meniere’s Disease. I have since made a *full* recovery after suffering for 3 years. In my case these symptoms were the result a food allergy (which I have also recovered from).

I created a web site to document my own experience since it appears most ENTs have little idea about simple allergies (e.g. food, environmental) as one possible cause of significant & sudden hearing loss.
http://sites.google.com/site/joeyhorowitz/
It includes scans of my hearing tests & allergy results.

http://www.houseearclinic.com/allergies.htm - is an example of a medical practice that acknowledges the connection between allergies and hearing disorders. I am not a patient of theirs (wish I had found them 3 years ago!)

Hi Graham,
I am taking interest in the deaf culture and the complications of receiving a cochlear implant. I appreciate your post and am interested to hear more about your experience. I wish you the best of luck and hope everything works out for you and your family. Thank you again for your post.
Sincerely,
Kristina

Pretty cool blog you've got here. Thanks for it. I like such topics and everything connected to this matter. I definitely want to read a bit more soon.

Sincerely yours

I lost my hearing due to explosions in Iraq. I am now 25 years old and my heraing keeps getting worse. I am off for a scan soon to see if the explosions destroyed my Cochlea and that may be causeing the worsening of my hearing. Keep my in your prayers. Being deaf over night at the age of 23 was rough.

Truly interesting story as for me. It'd be just great to read more concerning such topic. Thanx for posting that material.

Hi Graham. Your problem is well known in the literature (SSHL). In 95% it is only a monolateral HL (typically due to a virus, a vascular problem or, as in the case of Meniere Desease, to an alteration of fluids (endolympha) in the cochlea. Since you suffer from a bilateral HL (unfortunately!!) there are two possible diagnoses:
a) a recurrent virus
b) AIED ethiology (autoimmune disorders)
A cochlear implant is probably the best solution, since technology nowadays assures excellent results. If you have a residual level of hearing
(in some frequencies) the new partially inserted cochlear implants represent the optimal solution. Although I am not a physician, I have a large experience on the subject. I am, in fact, an applied mathematician working with ENT-researchers.
If you send me a recent audiogram, I could be more precise.
God bless you!

Hi Graham,

I've suffered hearing loss in my right ear since approx. 2004. I did have a severe bang on the head in 2001 but not sure if that's anything to do with it. I also suffer with an autoimmune disease Wegener's Granulomatosis but have been told that this problem had not been caused by this, at least that's what they say to date. These things have the habit of changing. It's a long story but I eventually had a grommet fitted in 2006, which resulted in a water like, clear, very runny fluid leaking from my ear, so much so it would wet my hair a little and run down my neck on occasions and was worse if I bent over, etc. I would at times have to hold a tissue to stop it from doing that. This continued until approx. January 2008 when I had a bad fall and the grommet came out and the drum healed over (my balance is affected at times and I keep falling and hurting myself ending up in A&E), by which time I'd had a second one fitted. This time I refused to have a 3rd fitted as I wanted them to test what this fluid was, as it just didn't seem right as I had no earache or anything like that and if it had been due to an ear infection I would have thought that something would have been done sooner such as antibiotics and testing of the fluid but it hadn't. The Consultant asked me if it was 'Gin clear', which it was, and then said he thought it was a CSF (Cerebral Spinal Fluid) leak where the lfuid surrounding the brain is leaking through the barrier leaving you at high risk of meningitis and referred me on to skullbase and Neuro surgeons. Further scans and a Tau protein test, where they inserted a needle through my ear drum to extract the fluid for testing, proved positive for Tau protein. After 14 months approx., after it had healed over and had stopped leaking out, they eventually did the operation they had described i.e. a Craniotomy, etc, the only one ever described. They said it had to be done because of the extremely high risks of meningitis. However, things didn't go well and they said as they couldn't find any evidence of a CSF leak during the operation despite testing it for 10 minutes, they said they hadn't done the operation (yes confusing I know as they had done something) I had consented to because of what they found at this stage but did operate and did fill the roof of my ear anyway with what I don't know, even though they freely admit that they saw no evidence of a leak. Why repair it if they didn't see a CSF leak? I was told that I just had a Glue ear not CSF leak. None of what they said adds up. The scar, all around my ear, needed 12 metal staples and is in the wrong place to start with. At the first clinic app. after the operation they said it was just a glue ear again but I didn't agree as I knew what one was and they agreed to redo scans, which I had done a couple of months later. Why had the fluid tested positive for the Tau protein and why hadn't they tested it earlier and why had a leak also shown on the scans, both of these were now ignored? No one answers my questions. He did arrange for me to have a hearing aid, which isn't wonderful either.

At the 2nd clinic appointment after seeing the redone scans he apologised saying he obviously hadn't looked hard enough and that the latest scans did still show a CSF leak. We were shown it and there was a big green arrow there so he didn't miss it he said. This he said meant that I would have to have it done again and this time they would have to do what they had planned for the first op, which was to make a 2 inch scar above my ear like they said the first time (nothing like the huge one I already had requiring 12 staples that went all arond my ear) take a piece of my skull out to repair the leak with the bone dust saved from the drilling, which is what they had planned to do the 1st time. Obviously I was gutted, devastated, distressed, etc., more so as I've had a fear of hospitals all my life. Lots of things were done wrongly the first time and I wasn't about to rush in to a 2nd operation. I no longer trusted them.

As I no longer trusted them I went to a different hospital and things have gone from bad to worse there. Although they initially said that scans they had looked at showed a definite CSF leak and went to great lengths to explain what operation has to be done another Consultant there said there wasn't one and then there was and again there wasn't one. Again none of it makes sense. they have all agreed finally they can see no leak not only in the scans done there but also in scans done at the other hospital, even on the one with the big green arrow on that the first hospital had been so definite there was one and also what the second hospital had looked at and had said there was one. Now they say they've all looked at them all and have seen no leak. Again none of it makes sense. They also say now that the right ear problem is just a glue ear and that nothing can be done for that. I find it hard to believe that it has taken 6 years and them all, some several Neurologists, skull base surgeons, ENT's all experienced Consultants having done all that they have including what the first hospital described in a letter as a 'FAILED REPAIR'. I can't believe it's taken all that to even diagnose a simple Glue ear. The 2nd hospital did say that because the first did the repair of the leak (yes the leak they say they couldn't find) that this will mean that the hearing will be dulled permanently now because if it, as it cannot be undone. I just don't know who to trust or who to believe anymore.

They did do another Tau protein test at the second hospital also without a GA but done in theatre. During the first there had only been a little pain as they had used a numbing gel/ointment first, more discomfort than anything and wasn't a problem but the 2nd one done also without GA was excrutiatingly painful so much I screamed out when he stuck the needle/knife through my eardrum. He had said it was going to hurt but when I told him that it hadn't first time it had been done so why would it now, he asked how they had done it so I told him about the numbing gel. His response was 'Oh I don't have time for all that, I've got a full list'. I had never met this Dr before. The pain was bad that the shock of it made me jolt my back and that was excrutiating too, I thought I was going to pass out it was so bad. This Dr said he couldn't get any fluid out to test. However, the actual Consultant said they had and even described what he had done 'when I was asleep'. He wasn't there at all at any point and I was not asleep at any point. Bizarre.

In the last couple of days the other ear the left ear has also filled with fluid and my hearing is now very bad. The tinnitus is worse, really bad all the time since the op. My hearing is so dulled that I cannot hear myself and cannot judge the level of my voice so that I either shout or speak too quietely. I have become so isolated that I can't go out now as I often can't make myself understood. If you were to put fingers tight in both ears and stick your head under water, that's what this feels like. It has at times been painful recently with this left ear when the fluid moves around.

I was wondering if anyone knows the answers to the following questions:

Can a Glue ear last for several years constantly and then happen in the other one too for no reason?

Is the 'glue'/fluid that comes out of a glue ear very clear in colour and consistancy like water and runs down your ear/neck and wets your hair?

Would a glue ear be so difficult to diagnose and take so many experts and an operation to diagnose it?

Should they have put a needle/knife through my eardum without the numbing gel?

I'm also concerend about the amount of scarring that this eardrum must be suffering from by now after 2 grommets, 2 tau protein tests, etc. it must have been a bigger hole the 2nd time as they used a suction tube not a needle to try and extract the fluid. Can this cutting and scarring have a long term affect on the eardrum?

A big part of my life/job is communication not just by public speaking but also on the phone. I can barely hear now on the phone so have no idea what to do. Does anyone know of any help available for this kind of hearing loss? I would be really grateful for any advice. Graham could you please pass this email on to the guy called Stephen who says he's a mathetician working on ENT research?

I hope everything works out for you with the cochlear implant. Thanks for the blog it's really helpful. Take care now.

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is this avaoidable or detected an an earlier stage?

I am curious to find out what blog platform you are using? I'm having some small security issues with my latest blog and I would like to find something more safe. Do you have any suggestions?