Diagnosis help please

Hello everyone,

I wasn't sure if this was the correct place to post, but I am writing on behalf of my girlfriend.

I'll try to cut a long story short: last August she had a bad ear infection in one of her ears, this then turned into pain in both ears and trouble hearing (especially higher tones).

After numerous visits to her GP where they kept prescribing Drug after Drug, none of which dulled the pain or helped in any way shape or form, she was referred to our Local Hospital's ENT department.

They took a few hearing tests and she has been given hearing aids, these were only useful for about a week or two before putting them in gave her excruciating pain.

She was diagnosed with Tinnitus along with Sensory Neural Hearing Loss.

The ENT then kindly discharged her and said they was all they could!!!!

She has said she can deal with the hearing loss and the Tinnitus, but the pain is immense and brings her to tears numerous times during the week. Its having a major impact on her life.
Sometimes it feels like her ear is about to explode, but from all the doctors she has seen, half have said there is fluid behind the ear and the other saying there isn't.... which doesn't really help to explain the situation.

I managed to get her GP to refer her to the "Royal National Throat, Nose and Ear Hospital" in London. The referral they gave her was 3 months down the line but suppose its just one of those things.

After the expensive trip down there we realised it was as useful as a Chocolate tea pot.

They gave her another blood test and said that if it came back clear they couldn't really do anything else for her? Nothing knew was learnt, no doctor willing to try further tests or to try different avenues.
The blood test came back clear along with the other 4 or 5 tests that she has had since August 2013. Since this pointless referral, nothing else has happened despite her GP pressuring the RTNE Hospital for another referral.

My girlfriend is only 22 years old, and it seems like the doctors / gp's etc ain't willing to get to the bottom of the pain and hearing loss in someone so young with unexplained pain.


A few details on the intense pain she currently has 24/7. Sometimes it feels like a balloon is behind her ears, she constantly has a sharp tingling pain running down the back of her ear and sometimes into neck. A couple of times her ears have gone really hot and both of them reached 37.7 and 38.4, with her body being normal temperature.


I was posting this just to get any advise? whether anyone has had all these symptoms or knows someone who has and what their outcome / diagnosis was?

We are really just trying to figure out a path to take to get answers etc!


I hope that all makes sense and isn't too long winded (I know it kind of is.... sorry)

Any help would be extremely useful.

Thanks,

Scott
  • Hi, i know this was while ago but how is your girlfriend doing now? Because right now am going through this its so hard because eeach and everyone in hospitals are saying different things like no one actually knows the pain and suffering. I really feel her pin as have been going through this for few months its driving me insane and am only 28 with 2 young kids.:( 

  • I too would either go to a neurologist or ask to be referred to a different ENT. Many people go for years with mis diagnosis after mis diagnosis only to find out they have had fluid in their middle ear and many times by the time it is found a lot of damage has been done to the middle ear.
  • Hi Scott
    sorry to hear about the problems your girlfriend is suffering. If ENT are unable to find a problem it would be worthwhile asking her GP to refer her to a Neurologist. Good luck in your search for a solution.
  • Thank you for the reply.

    I believe they are the bod standard hearing aids from NHS. She had the ends changed a couple of times, and now they are ones with small holes in?

    But she hasn't worn these hearing aids for a few months now. Unfortunately the inner ear pain has been there since August and the ear infection.

    Doesn't help that an MRI scan came back clear as do the blood tests.

    Might look into an allergy though as an alternative idea.

    Thanks

    Scott
  • Hi Scott.

    I can`t really give you an answer, but do the hearing aids have ear moulds?
    Has anyone suggested an allergy to the these, as it appears to have started a week after your girlfriend got the aids.