Hi All, well I had my ENT appointment today, saw a lady not the man which I saw last year, wasnt too impressed, told her everything or as much as I could fit into 5 mins! Also presented her with my list of symptoms! She did a few tests and said there was nothing pointing towards a vestibular problem! YEAH RIGHT! Told her "but I have dizziness with head movements, it started after a cold etc"...she seemed surprised I had dizziness 24/7 which I thought was odd again. Told her about my neck/jaw and that I wanted to know if it was inner ear or NOT! She said she wanted me to have a brain scan (MRI) - panicked me! - and she seemed to think this would show a vestibular problem (ie: the scan also look at ears). I was assertive and told her it could not show an inner prob so demanded an ENG! She agreed. Am on list...should have MRI in 6 wks, ENG a few wks after that...She said if both tests were negative, she would refer me to a neurologist...

Feel highly emotional. I've waited for this day for so long etc...wasnt impressed by her knowledge and also worried about what they may find.

Oh, hearing test fine...

Had to come on here to vent! Cant wait to talk Ilia! It will probably be Thurs night xxx

Emsybobs


Sorry the Doc was not better----but glad to hear the "hearing test" turned out fine. Pretty frustrating dealing with these Docs---but at least your sked for the MRI & ENG-----think that should pin down the problem---interesting how much most of these Docs are the same in this medical area---no matter where they are located or brought up.


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Hi Emsybobs,

Sorry the ENT was a pain, although afraid, based on my experiences with ENT's, that I'm not surprised.

I do think to remind you you're not a) bananas or b) Likely to show anything at all on an MRI - ENT's do this as a precaution, it's totally standard, anyone would be given one with your/my symptoms, and 99.9% of the time it comes back negative, that I should post this section of the article written by the vestibular research nurse...

Written by Sue Pesznecker.

"Entry-level position is the otolaryngologist or ENT (ear-nose-throat).These docs have completed med school, a 3-5 year general surgery residency,
and a 2-3 year ENT residency. They may or may not become board-certified.ENTs take care of a wide variety of conditions involving the ears, nose, and
throat-- mostly sinuses, tonsils, ear tubes, etc. Many of them become head/neck surgeons and care for cancer patients few of them may become self-educated about the inner ear, but their training actually contains little inner ear work.

I'll be honest here, Emsybobs, many ENG's come back negative - sometimes because people have already compensated to a degree, and also, I was surprised to find out from the neuro oto I saw today, because it doesn't test all chambers of the inner ear, so isn't 100% reliable. Apparently my tests was borderline -- i.e indicated there might be a problem, but might not. My treatment has been based not simply on the tests, but also the expertise of the neuro oto I saw who listened to my symptoms, initally no vertigo, but non specific visual dizziness 24/7 that became vertigo at 8 months in, and had the knowledge and experience to know a vestibular disorder when it was staring him in the face, take me very seriously and treat it.

The ENT you saw really does sound like a turkey. Do you really want to wait for her to read you ENG results, tell you its negative and send you off to the wrong specialist - a neurologist!!!!!! Everything about your condition sounds like the inner ear. She's already not on your side, she's already failed to spot the completely and patently obvious - honestly Emsybobs, demand an NHS referral from your GP(you are totally entitled to another opinion) to the National Hospital of Neurology in London, it's worth travelling for, you'll probably be seen inside 6 weeks, they'll do your tests on the same day and they'll actually be qualified enough to give you a proper diagnosis. Use the ENT only to get your MRI result, if you get in to the National before your ENG under this ENT, you can scrap it, and run a million miles from this prize joker, who, I'm afraid to say, will probably just mess you around some more if you continue under her.

There's a time to cut your losses and stop dealing with people who don't respect you or the fact you're ill and move on to people who will give you the help you need. It's only my opinion, Emsybobs, but I was almost on my knees with the rubbish treatment I recieved from ENT's - the joy of having left those jokers behind is amazing.

I'm sorry you went through this, as I did, and many other on here, it's horrible, but there is a solution.

[This message has been edited by hbep (edited 09-29-2003).]

Sorry Emsybobs,
The truth is you probably know more than she does. Remember a few months back when I asked the ENT why it was some people got over lab in a couple of weeks and others were ill for months and months? He said it's probably because they pushed themselves harder! God I was mad! I wouldn't wish this on anyone, but I sure wish he could have walked in my shoes for the first 6 months! Also, don't forget, my colleague saw a right idiot of an ENT who ran virtually no tests - and told her "there is absolutely nothing wrong with your ears". She was distraught. She had also developed some hyperacusis - and when she explained to him that the sound of a baby crying in the waiting room was agony to her ears - he said "well no-one likes the sound of a baby crying" !!!! He obviously didn't know anything about hyperacusis. Well, as you know, her caloric test showed she had a massive difference between her left and right ears - in fact I think the guy told her that her reading in her right (damaged) ear was one of the highest he had ever seen!
I know docs are human, but some of them really should get out their old lecture notes to familiarise themselves with the facts.......

Ruth
xxx

Emsybobs:
I think we have all had our share of run of the mill Dr.s when it comes to this. Fortunately for me i listened to a few of the experts on this board and finally went to see the right specialist, a Neuro-oto.
It was the first time I felt someone really listened to me. They didn't dismiss me because my ENG came back negative. Unfortunately there is no magic pill so alas I must forge on with my VRT. That is the only magic pill. I still get frustrated but we have no choice other than to fight this with everything we have...through the tears...through the anxiety..through the rain, rain, rain, through everything....Never forget what a very wise man said."You're in for the fight of your life." Don't worry about the MRI, I don't believe one person on this forum ever came back showing anything wrong with their brain scan. Glad you demanded both tests, you have every right. Remember Emsybob, even if you can't see us we are all behind you as I know the same goes for everybody else. You also just had a really good day, I remember mine was on my birthday, it was just one day but it was my first sign that I was getting better...more will come...

all the best,
Kathy
Beat that Head Monster
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Hi All, I am crying from reading your posts. I have barely stopped crying since yest! Am at my wits end...

I heed all advice...Hbep, can you get a NHS referral outside your area? I'm not sure you can.... Is there any way you can find a Neurotologist for me in Newcastle? I dont know what to do...Hbep, I am truly beginning to wonder if mine is all inner ear...and I'm not just going by what the ENT has said. What do Neurologists deal with? Neck problems?

Thank you so much to all of you, couldnt have got through pasy year without you all...............xxx

Hi Emsybobs,

Don't let the ENT visit freak you out - you just need to get the right help. Firstly, yes, I am absolutely sure you can get a referral outside of your area, in fact I'm 100% sure you can as IRobertson is in Scotland and was going to get a referral on the NHS to The National in London. They can refer you outside your area if the correct specialist doesn't exist in your area. I think they can do whatever they like really, my doctor didn't even bother to check whether there was a neuro oto in my catchment area, just referred me into central London.

Anyway, regarding the neuro oto - put 'Feeling Low' in to search and 'Emsybobs' (yourself in fact) in to name search - read BOTH the posts from Dizzyblonde and it will give you some info on how you might track down a neuro oto nearer you. If you can't stamp your feet until your GP refers you to London. In fact you could also phone the national hosp of neurology and neurosurgery - ask for the neuro otology department and see if a) you can get a referral there, or b) If they know of a neuro oto near you. You just need to push that one bit further Emsybobs and you'll get the treatment you need.

And DON'T work yourself in to a frenzy about scary things you might have. You said it yourself - you got dizzy after cold - pretty classic of lab. If you have other symptoms they are probably caused by the muscular problems that can kick off because of the dizzy induced stress - if you have a slight tmjd problem it will be exacerbated by lab.

best,

hbep.

Thanks Hbep, your support is really valid...I phoned the hospital, they were really good, had long chat and told them my symptoms! And the man said "oh yes you should def come here, we are specialists in dizziness". I CAN get a referral outside London, he said its just a question of persuading your GP. Also he said waiting list is 6wks. He gave me the name and address of the specialist I should see....

Thank you Hbep, will book that appointment soon and be assertive! Hopefully they will agree...

And you are right about scary things being wrong, I am not concerned its life threatening but am concerned it could be TMJD or neck as it all scares me a bit and appears difficult to treat but hey, so is inner ear stuff...

Thank you xxx

OH, how do you know they would do an ENG the same day? Worried about this one as dont want to make a trip for a consultation and then wait 6 wks and then go down again for ENG....Asked man on phone who seemed unsure but told me to get doc who refers me to explain in letter - what do you think? xxx

Hi,

As far as I know, they test new patients on the same day - both the other people I know who went had this done, same as me. Can't say for 100% sure, but that's what I was told would happen by my friend, and it did. If you need to travel down in the morning and get tested on the same day it might be worth asking for one of the afternoon sessions. Or, once your doctors referred you and they've got the letter, you could phone and talk to them about it.

You're definitely doing the right thing,

best,

hbep.

ps - There's absolutely no reason to assume it's your neck and not your ears - in fact I don't think it's worth second guessing - only a specialist is really going to be able to tell you. The last thing I was expecting was a vestibular neuritis diagnosis, but that's what I got.

Hey Emys - thats what i was trying to tell you - hop it prepared you am bit - hey do not panic!! speak to me - thursady is fine or any time really.

I have not had a chance to read all the other replies yet as am going out!! Do not worry if they thought it was serious they would have you in hospital NOW doing the MRI. I will talk it through with ya - I am the same......lol. :smile: