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The lack of knowledge and support for this condition

Posted By andromeda74

"The lack of knowledge and support for this condition"

About: Pilgrim Hospital / Ear, Nose and Throat

(as a service user),

Have Menieres Disease and since I lost my husband in June last year my symptoms have been worse due to stress. I am gradually losing my hearing also when I have a bad attack of no balance dizziness and vomiting I end up in A & E due to a dangerously high heart rate in the last 6 Months I have been in A & E 4 times.

Saw a consultant in ENT July last year had a hearing test nothing happened another hearing test in December again nothing happened. Had a telephone consultation a couple of days ago lasted 5 Minutes asked if my hearing was worse. It is. They will make an appointment for hearing aids. My other symptons have to be addressed by another Dept in ENT, my doctor was supposed to do a referral but have since learned this has not been done that was 6 weeks ago.

So still waiting for help this disease is life changing cannot do many things because it is so unpredictable. It was bad enough losing my husband but that is another story I need to get on with my life like he wanted me to. Feeling despair at the lack of knowledge and support for this condition.

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Responses

Response from Mohamed Benamer, Consultant, ENT, United Lincolnshire Hospitals NHS Trust 2 years ago
Mohamed Benamer
Consultant, ENT,
United Lincolnshire Hospitals NHS Trust

Submitted on 02/08/2021 at 11:45
Published on Care Opinion at 14:39

Dear addromeda74

Meniere disease management is a challenge, establishing the correct diagnosis is the a major initial step. It needs a commitment from the clinician who is having interest in the condition, and definitely support from other services (audiology, physiotherapy, neurology and so on).

A consultation with a patient having this condition needs valuable consultation time ( 45-60 min). sometimes few visits required before embarking on the management

Thanks

MB

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by andromeda74 (a service user)

That's the problem seeing an ENT consultant in the first place. If a GP does not send a referral how can you get to the right person for help?

Saying that MD is challenging is an understatement especially for the person that is suffering from it. As it stands the cards are stacked against me.

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