Cochlear hydrops

[Dorsetwandering]

Hi has anyone out there got cochlear hydrops? Be good to chat if so. Thanks

[Randomwalk]

Hi Dorsetwandering,

On the basis of sudden low frequency hearing loss in June followed by fullness and tinnitus I have been diagnosed with ‘probable’ cochlear hydrops. Currently on betahistine and awaiting MRI to exclude other pathology. I understand that the high resolution MRI equipment necessary to actually image hydrops is not available here in the UK. Happy to chat!

[Dorsetwandering in reply to Randomwalk]

Morning! Sorry to hear you may be diagnosed with CH. I had an MRI scan which did diagnose it so I'd pursue that if I was you so you get a definite answer. I'm not on any medication but constantly fear it may turn into Meniere's Disease. I haven't been given any other help, I do have a hearing aid because I've lost some of my hearing through having it.....this could have been avoided if the Gp(s) had picked it up correctly. Good luck with yours and keep me posted.

[Randomwalk in reply to Dorsetwandering]

I have the same concerns regarding progression to Ménière’s disease.

I expect you’ve already found the Wikipedia entry on Cochlear Hydrops where the most recent trials seem to suggest a maybe 10% risk. I’ve obtained copies of many of the papers referenced on this entry trying to find where the data to support the unreferenced statement “The symptoms of cochlear hydrops fluctuate, and the condition tends to stabilize or go away on its own after several years” originates. So far I’ve had no success but I will keep on looking.

Regarding the MRI, I was told that I’d need a gadolinium enhanced MRI to actually visualise any cochlear hydrops and that this wasn’t available in the UK. The MRI I’m due to have is to rule out other pathology. The diagnosis of hydrops with this technology seems to be one of exclusion rather than inclusion which seems somewhat unsatisfactory.

[Dorsetwandering in reply to Randomwalk]

Thanks for that message. I haven't seen that before so I'll look into it. I was under Salisbury hospital for my MRI. I'm not sure why you're not getting the information I did?

[tindrum]

After a regular MRI that showed no abnormality, I had a period of a couple of months in which I experienced 2 vertigo events and persistent fullness in right ear and tinnitus in both. The tinnitus I am used to (I've had it for many years), but the fullness and hearing loss were clearly not normal even after the vertigo passed.

ENT doctor referred me to Guys, one of the few UK hospitals that can do an enhanced MRI. ENT Consultant now says I have endolymphatic hydrops, has put me on a diet - no caffeine (easy - decaf isn't too bad), low sodium (v. hard unless you stick to steamed fish and veg, and porridge and fruit - not impossible). and prescribed Betahistine - 16 mg 3 times a day (which turns me into a headachy zombie), so I am reducing dosage in order to ramp up later.

Do ask to be referred to a hospital that can do the enhanced MRI. I at last feel my mysterious condition is being taken seriously rather than boxes ticked…

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