New to Meniere's and consultant wants to insert a grommet

Ears, nose and throat
1

This is my first post on this forum and I'm seeking opinions from people with more experience than me

Back in April 2014, I started to experience some symptoms - tinnitus, some hearing loss, my ear felt full and I had a vertigo attack.

I went to my GP, and was first told to do steam inhalation for three weeks, which didn't do any good at all., so got myself a referal to an ENT consultant.  As I have a small health policy I chose to have a private referal. This was at the end of May

At the referral, the consultant thought it might be an acoustic neuroma, and I had an MRI scan, which came back clear.  He gave me no further opinion of what he thought might be the problem - just a sudden hearing loss.

As I didn't have full private health insurance I was turned over to the NHS.

I had an audiology appointment in late July, which revealed a hearing loss particularly in the lower frequencies, and I'll be getting a hearing aid at my next appointment at the start of October.

I was also referred to a 'balance clinic' which I thought was for help in coping with the vertigo....

I attended this appointment on the 1st September.  I saw another consultant, who moved my head around, got me marching on the spot with my eyes closed, and then announced I had Meniere's Disease, and he'd  treat it by putting in a grommet and steriod injections!

To say I was stunned was putting it mildly. I was aware of Menieres from what I had been reading on the internet, but nobody had previously mentioned this in connection with me.  All of a sudden I've got it, and he wants to operate on me !

I was sent away to read up as much as I could, and I'd see him again before any surgery.

Next day, I get a call - can I come in for my operation on 16th Sept.  Reluctantly I agreed, although this is all moving way to fast for me.

I've now got an appointment for Balance Function Tests on 9th Sept, and my next appointment to talk to the consultant is yet to be advised.

Since then I've been reading and researching.

It is clear that Meniere's can be very a very debilitating illness which can turn lives upside down.

At this point, I feel I'm not that badly affected.

I have no fullness in my ear, my tinnitus is now a low white noise hiss which I hardly notice and doesn't even keep me awake at night.  Most of the time the hearing loss isn't a problem, as my other ear (for now at least) is ok. 

I've had 5 vertigo attacks in all since April, the last being on 1st August.  They weren't pleasant, but didn't seem as bad as some that I've read about.

In short, my symptoms aren't impacting my life too much.

I've looked back on my vertigo attacks, and I can now link four out of the five to either stress or diet.  Two of the attacks were within a couple of days of eating in restuarants, so I probably had much more salt than normal and the others were at the time of my MRI scan, and the last one after a really bad day at work.

I'm now making lifestyle changes  to manage diet and stress.  I'm switching to a low salt diet and cutting caffeine.  I barely drink alcohol anyway.

I only work two days a week, and my manager has agreed to place me in roles which are looked on as less stressful and intense.  I'm also making the ultimate lifestyle change.  I'm taking early retirement in December.  An early retirement has been in my mind for some time, but it now seems to be the right time.

With these changes I think I can really help myself.

I'm also open to taking medication.

But I still can't feel happy about the insertion of a grommet at this stage, and steriod injections.  I understand there's a link to glaucoma and steriods.  My mum had glaucoma, and although I don't, my normal eye pressure is higher than average. 

Plus, as my tinnitus is at low levels, I don't really want someone rummaging around in my ear which might start it up again!

After all my reading and research, at this point I would be very happy to try lifestyle changes and medication, especially as the Meniere's is not having a very adverse impact on my life.  But the grommet seems too much too soon for me

Sorry this is a long post, but I would welcome thoughts and views from people who know more than me about this illness  - if you were in my situation, what would you do?

Thanks

2

Hi I read your post and I must admit it does seem as though the medical team are moving very fast!  It sounds as though your Meniere's is like mine at the moment.  My GP 'thinks' I have Meniere's but has not referred me to the hospital. I think I have had this condition for about 5 years on and off with only one attack which had me bed bound for 24 hours. I tend to get half a day of dizzyness and sickness.  The heavy feeling in my ear seems to be affected more with low noise hearing problems so when someone mumbles I can't hear them. I take an antihistamine which seems to help with the fullness in my ear ( probably psychological) Maybe the operation is what you need to help you,  I don't know.  I just know if it was me in your shoes I personally would ask them to wait to see how I go.  But talk to them again to put your mind at rest.  Whatever happens I wish you well and hope things turn out ok for you.

Best wishes Jackie x

3

Hi i would be asking for futher tests prior to grommet insertion - Overview

Background

Electronystagmography (ENG) is a study used to clinically evaluate patients with dizziness, vertigo, or balance dysfunction. ENG provides an objective assessment of the oculomotor and vestibular systems.

The vestibular system monitors the position and movements of the head to stabilize retinal images. This information is integrated with the visual system and spinal afferents in the brain stem to produce the vestibuloocular reflex.[1]

Essentially, the standard ENG test battery consists of the following 3 parts:

Oculomotor evaluation

Positioning/positional testing

Caloric stimulation of the vestibular system

Indications

Although ENG is the most widely used clinical laboratory test to assess vestibular function, normal ENG test results do not necessarily mean that a patient has typical vestibular function. ENG abnormalities can be useful in the diagnosis and localization of site of a lesion. However, many abnormalities are nonlocalizing; therefore, the clinical history and otologic examination of the patient are vital in formulating a diagnosis and treatment plan for a patient who presents with dizziness or vertigo.

Although ENG testing cannot be used to determine the specific site of lesion, the information acquired can be integrated with history, symptoms, and other test results to aid in diagnosis. Comparing results obtained from various subtests of an ENG evaluation assists in determining whether a disorder is central or peripheral. In peripheral vestibular disorders, the side of lesion can be inferred from the results of caloric stimulation and, to some degree, from positional findings. An ENG evaluation can also be useful in ruling out potential causes of dizziness.

In a large study of patients tested with ENG in a wide range of clinical settings, Stockwell[2] found abnormal test results in approximately 39% of patients tested, and only about 29% of test results revealed the site of lesion. Peripheral vestibular abnormalities were found in approximately 23%, whereas central abnormalities were found in only approximately 5% of patients tested.

Next Section: Periprocedural Care

 

 

READ MORE ABOUT ELECTRONYSTAGMOGRAPHY ON MEDSCAPE

RELATED REFERENCE TOPICS

Vestibular Rehabilitation 

4

I was diagnosed with menieres over 2 years ago. As much as possible i have cut salt from my diet, drink decaff tea and coffee, no coke and very little alcohol. I have the same symptoms as you. Hearing loss on one side, tinnitus, fullness, and periods of dizzy spells, some mild, but with others I am bedbound for several hours with vomiting and my vision is affected greatly. I take one water tablet each morning (it's supposed to help flush sodium from your system) and 3 x 16mg betahistine tablets a day. I have had an MRI scan and a balance test and now have hearing tests twice a year on follow up appointments at my local hospital.  I have never been offered any other alternative treatments. During a recent quite severe vertigo attack, I had to call out my GP and during his visit I mentioned I had read about grommet and steroid injection treatments but he assured me these were usually only used as a last resort and he classed them as extreme and only something to try when all else has failed. If you are feeling as well in yourself as you say, then I would seriously question either of these procedures until you have tried everything else. I can't believe they are willing to do this before you have even tried any medication

5

Just wanted to thank you for the replies which have confirmed my gut feeling that the proposed treatment is too much, too soon.

On 9th September I'll be undergoing a battery of tests which I believe are the tests that Abby described.

I will see the doctor again before any operation, but he'd have to put forward a VERY compelling case for having grommets and steriod injections for me to agree at this stage.

You have to trust that the doctors know what they are doing.... but I think you have to trust what you own body is saying too.

My body is telling me that I feel fit and well most of the time, and mentally I'm in a good place at the moment.  I'm looking forward to my early retirement and the freedom from stress that it'll bring, and the new opportunities.

I feel I want to use the positive feeling to at least try and deal with this with less drastic measures first.

I know a lot could change in the future, but I want to feel in control during the good times.

I must admit I'm nervious about saying 'no' to the doctor..... but I'm not going to have a surgical procedure if I don't think it's right for me.

I will update with what happens 

6

Reading your post was like reading my own experience, except over a much shorter time frame.

I have had it for 2 years but the attacks seem to be related to stress. My next appointment is Dec. And I have not been offered grommets yet. My sister had one with no ill effects.

7

Just thought I'd give an update to my situation.

I had tests on 9th September.  I was wired up and had to follow the dot with my eyes, which was fine, and the water in the ears test.  i had a bit of mild dizziness when they did this, which I understand is fairly normal.  I actually rather enjoyed the number and word exercises I had to do, but I rather like party games.

I have a 'pre-op' appointment on 22nd September, to see if I'm fit for an operation, and an operation date of 1st October.

However, I have decided not to proceed with an operation at this time.  I am still feeling very well, and have been free from verigo since 1st August, and I have no ear fullness and my tinnitus is still very low.

I intend to proceed for now on the basis of diet and litestyle changes.  I don't want to add medication to the mix at the moment, as I am currently so stable.

I've been told I see the doctor on 22nd Sept as part of the pre-op appointment.  Sp it seems I will have to be screened for an operation I'm not having.  But I can't see the doctor unless I attend this appointment.

It disappoints me that I will have to take an appointment that could be better used by someone desperate for an operation, but it seems as if it's the only way I can see the doctor!

I still feel as if I'm on a train, going to a destination I don't want to go to, with no way of getting off.

But it will be stopped on Monday.

8

This is.my first.post also, I was.so unaware.of.all the.people.that.also have Vertigo.I was diagnosed  2 yrs ago.It.started.with dizziness. Then a constant humming,.now.i have.lost.practically all my hearing in my left.ear.Tje Dr says its.Menieres, a fluid.build.up in my inner ear My dr put me on water pill.and Meclazine for.my bouts.of vertigo 6months.had gone by or.maybe more time.and my  symtoms.are.really bad almost every other day.I was.constantly having to call work.My boss.had to let me go.I am begging my dr todo surgery.He sending me for balance.tests.first. So is.that what happens first? I so need to return to work.I miss.working and temp diability is.exactly what it.says, temp.

9

I was diagnosed with menieres 2 years ago. I too suffer with dizzy spells, ringing in my right ear and hearing loss. I take a water tablet and betahistine daily. When first diagnosed I had an MRI scan and a balance test to confirm. I go for about 5 months maximum without dizzy spells, but can also have 2 or 3 a week during bad times. This is quite normal for menieres. I have days off work and although I've been told I won't lose my job I'm always worrying that eventually they'll get tired of me being off. 

10

Hello again, I had my appointment with the doctor this morning.

I think I confounded him a little, as the test results came back within the normal range!

In view of that, and my continuing lack of vertigo, my improved hearing and lack of ear fullness, he agreed with me that the best way forward was diet and lifestyle changes.

I asked for recommendations about how much salt is allowable, and he said 'no salt at all'.  I'm taking that with a pinch of salt, as no salt at all is impossible!  I'm aiming for 1g of sodium a day.

I will get another appointment in 4 months time, to see how I'm progressing.

I think he's quite interested in my case, as I'm different to what he expected.

I'm very pleased with this outcome. - now I've got to make it work for me.

Just wanted to thank everyone for their comments - it's been really helpful for me.

11

I try to stick to the no salt diet but find it really hard to do. Let me know what kinds of foods you eat as I struggle with what to have at mealtimes

12

I'm really new to this myself, but I've been having things like shredded wheat or shreddies ( with raisins or apriciots inside) for breakfast.  I'm striggling a bit for lunches.  If I'm home i tend to have a jacket potato topped ith a little bit of cole slaw.  I have a bread maker, and have been making my own bread since the start of the year.  I've switched to lo-salt, so that means I can make a lower salt bread, and take a sandwich to work.  Fillings are a problem as I always had ham or cheese previously!  i've been having chicken sandwiches mostly.

For dinner, I've been keeping it simple, with   meat, poultry or fish, with vegetables, all cooked without salt of course.

For desert I've been having yoghurt or fresh fruit

I got a yoghurt maker at the start of the year, so I'm also going to investigate doing yoghurt based dips and sauces.

I'm collecting suitable recipes from the internet, and stocking up on herbs and spices, so I can start doing some cooking from scratch.  I've also bought a book from Amazon called 'Meniere Man in the Kitchen', which gives some ideas.

I will miss things like a chunk of cheese or a bacon sandwich, but I hope, over time, I'll work out a varied diet that I enjoy.

But I think  it can be difficult to think up new meals.  On that note, I suppose I'd better put another jacket potato in the microwave for lunch!

13

Yes you're having the sorts of foods I try and stick with. I struggle for variety sometimes - but if there's a plus side to this, it's a great diet when you cut out all the bad foods. I was 62kg earlier this year. I'm now down to 56kg!! I have a relapse occasionally and eat one of the 'no no' foods, but on the whole I try and stick to it. I miss cheese, crisps and pizza terribly though!!! I just hope it's worth it in the long run. Fingers crossed it works for you too

14

Actually, I'm experimenting with a 'low salt' pizza.

As I've got a bread maker I can make my own pizza dough.  So I made the dough as normal, and used lo-salt instead of normal salt.  I used tinned chopped tomato for the base, pepped up with pepper and mixed herbs.  Then on my side of the pizza I used vegetables only (this time it was cherry tomatoes, pineapple chunks and chopped peppers) I added ham to  my husbands side, and sprinkled with grated mozzarella, but not much on my side.

A quarter of 'my' side was 0.34g sodium (about 0.85g salt), so it is ok for a treat from time to time.  It tasted ok too.