New diagnosis bilateral vestibulopthy

Posted , 3 users are following.

Hi, I have been off sick now since Febuary, initial unsteadiness and lightheaded. which has gradually got worse and not following the typical path of Labs. MRI head was normal. vetibular testing was normal, but there was one test they didnt do when they put warm water in your ear. My ENT consultant is at a loss as to whats wrong. Im continually getting worse with really bad tinnitus and head vibrations. In despiration I have sought the help of Dr Surethrian who is a marvellous Dr specialising in balance problems. He diagnosed me with bilateral vestbulopathy with oscillopsia which is damaged middle ear basically, plus I have awful eye movements and feels like my head is being shook. I wondered if anyone is in the same position as me here, it would be great to compare notes, and possibly talk about it. It certainly is a scarey proposition, the Dr did warn me I may possibly may not be well enough to return to work, and my life will change. I am waiting some rehab, but gather there are no gaurantees. Any responses would be appreciated. Im on Bristol.

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  • Posted

    Hi there

    unfortunately I cannot give you any advice on your actual condition only that I understand what you are going through, I noticed that you had not had a reply(I am new to this site so maybe you have had acreply but I cant see it) so I wanted to at least say you are not alone in your symptom experiences. I have vestibular hypofuntion I dont get bad eye movements but I get everything else.

    All I can say is it does take time for the Dr's to diagnose but it is usefull if you keep a diary of your symptoms and how long spins last, what sort of noise you hear in your ears etc. That was what I was told to do by the ent specialist. Hope this helps a little.

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    • Posted

      Hi emrob,

      Thank you for your reply, I do appreciate, I am new to this site too, and was giving up on a reply. Thank you for the tip of keeping a symptom diary too.

      I really would appreciate someone to talk to about my condition who totally understands, Family and friends try to understand, but I find it so hard to describe how I feel. I know Im not alone, there certainly seems to be lots of people with the same symptoms out there, just wondered if there was anyone willing to pair up by email to become a support "dizzy buddy" if that makes sense!

      The latest is I need to get Vit B 12 checked, and also autoimmune screening blood tests.

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    • Posted

      Hi emrob,

      Thank you for your reply, I do appreciate, I am new to this site too, and was giving up on a reply. Thank you for the tip of keeping a symptom diary too.

      I really would appreciate someone to talk to about my condition who totally understands, Family and friends try to understand, but I find it so hard to describe how I feel. I know Im not alone, there certainly seems to be lots of people with the same symptoms out there, just wondered if there was anyone willing to pair up by email to become a support "dizzy buddy" if that makes sense!

      The latest is I need to get Vit B 12 checked, and also autoimmune screening blood tests.

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    • Posted

      I would be more than happy to be a dizzy buddy as it would help me too. Not to sure what it entails but im sure you will explain. I only joined here today so still learning how it all works all I can say is this morn I was a gibbering mess and now im not feeling so tearfull. It definitely helps. I may not always reply straight away as sometimes I can't look at screen when v dizzy but I will when can . Emma
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    • Posted

      Hi Emma, hope you are feeling better than yesterday.

      All I was thinking really about a dizzy buddy as I called it, were to maybe email or text and generally support when days are bad. I see you have several people in contact with you on your post, so maybe its a bit much at the moment. I cant see away to contact privately here with personal email information etc, but on face book Im Jan Jeffs. X

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  • Posted

    Hi, I had a middle ear operation in January 2013 and it went wrong. Blood ran into my ear, this deafened my left ear totally, since then I had a cochlear implant so that I can partially hear on the left side. Because of the middle ear operation I have a massive balance problem with tinnitus problems, but I consider the worst diagnostic I have is my oscillopsia, since I have this my life has changed, I can't drive anymore and my vision is getting worse because in motion I am unable to recognise objects or persons.You mentioned that Dr Surethrian is a specialist in balance problems. How can I contact the Dr.? How was your rehab? Has it been successful? I live in Portland, Dorset. Please let me know of experiences.
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    • Posted

      Hi Frederick, you sound like you have been through so much there!

      Dr Surethrian is an amazing specialist and the ONLY Dr who has understood my health problems. I saw him the first time with a private consultation at the Spire Hospital in Tunbridge Wells. He is there the first Monday of every month, this consultaion I thought was worth every penny. I then was refered to his balance centre in Gillingam in Kent. It was a bit of an ordeal travelling from Bristol, but Mr Surenthrian pulled out all the stops for me to see him and his physio, and CBT. You can get your GP to refer you to the balance centre which is NHS. The team also follow up with telephone consultations which are very helpful and supportive.

      I have gaze adaption excersizes to do which basically is turning your head side to side and up and down whilst focusing on a cross on the wall. This and balance excersizes has to be done several times a day. I cant say my oscillopsia is any better, but I guess I am learning to live with it a little.I have had to take early retirement from work. Dr Surenthrian has been a wonderful support in this, but was very hard to read in black and white that I shall never be fit enough to return to work again.

      Please private message me if you would like to chat my email.

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