Hi,
Have just been to the ENT and have to have a CT scan of my head to check for any abnormalities. I was offered an MRI but don't like the idea of that! The consultant said he was quite sure there was nothing there but it was for my 'peace of mind'.

I have had this for 3 years now and still suffer most days with dizziness. My balance is not too bad, though I have suffered badly with that at times.

Once we get the results of my scan and it is ok, he is talking about me having grommets and then having steroids injected into my inner ear. I have just done a quick research on the internet and see that this is usaually for people with menieres which I do not have. I do not have any deafness and don't suffer severe vertigo attacks.

Has anyone had this procedure done or in fact know anything about it. Mostly, does it actually work? Any advice would be appreciated. Thank you.

Mac2

Hi Mac, do you know that it is definately that its your inner ear causing your dizziness? Have you had any vestibular testing?

Cathy

Hi Cathy

I was kind of a textbook case in the early days, got upper respiratory tract infection, and vertigo, dizziness and imbalance afterwards which resulted in me being off for 5 months from work. Docs at first said labyrinthitis then when I went through the ENT about 8 months into the illness (back to work by then but still suffering on a smaller scale), they said VN. I know they are very similar. The only tests I had were - hearing which was ok - air pressure which was fine and the goggles test which I assume was ok. I wouldn't have the caloric test at that time because I was suffering terrible anxiety and could not go through with it.

I had a few other simple tests like walking in a straight line and heel to toe and closing my eyes with arms forward and marching on the spot. He did this again tonight and I still couldn't do them successfully which is 'normal' for someone like me apparently. He also said that it was possible that I would never compensate fully because I had gone so long. Not what I wanted to hear!

Anyway that's about it. My balance is pretty good most days and the dizziness occurs mostly if I am bending my head forward i.e. to do the ironing or read a newspaper stuff like that. I also have moments where I think the world has been pulled from under me and I think I am going to fall, but I don't. Waiting in queues also starts me off. What is so frustrating is that I have been back to nigh on 100% a few times but can't understand why it keeps coming back.

Mac2

Hi Mac, have you done any vestibular therapy? I've written on a separate occasion listed as "BPPV again and again". It sounds like you might be having similar problems as I am, where it seems to be getting better but something will set it off, you're dizzy all over again and the process just continues.

You might want consider the coloric test. Really bad spinning, but the ENT can get a better idea of what's going on if you can get through the test. If you have BPPV (Benign Positional Vertigo), the spin during the test won't last even as long as a minute. If you can have someone talk you through it, the spinning is only temporary. I would recommend a sedative afterward, like Valium. It might be worth doing.

You could have BPPV. If you haven't read about it, it's dizziness brought on by particular head movement. Crystals in your inner ear are released and knock around in the inner ear.

When you turn your head, the crystals move in that direction, and you'll have a spinning feeling. What maneuvers in PT will do is manually move the crystals through the canals and drop them into a place where they can settle, which is usually when you sit up. If they're not moved out of the canal, they'll continue to disrupt your balance.

If your dizziness isn't correlated with the left or right side, but up or down, the problem could be in the posterior canal, which I've been told is easier to clear. Mine is in the horizontal canal and for some reason my trouble is mostly with my left side and it's not clearing.

I'd be interested to hear more about how the steroids might help your situation.

You probably feel 100% the longer it is after having an episode of spinning. I've had that too and it's frusterating. You seem to be getting better than it's set off again and you're back to square one.

You might have some success with vestibular PT. I've been going to someone who has a neuro background as well and I have relief after a few days, which continues until it's disrupted again with another spell.

Good luck! Hang in there. Try the Valium. I've used it when dizziness is out of control and it does help.

Before having anything done to your ear, I would look into migraine. You dont need pain to experience migraine. Many people on here have MAV. I would look into that because once you have an injection in the inner ear, which can cause more damage there is no going back.

Keep your options open!

Cathy

Hi Mac.

We're in very similar situations, both in time and symptoms.

My last take is on BPPV, as told by my doctors, but I can't tell for sure since it has been kind of atypical, as not even once the Dix-Hallpike tested 100% positive...

That's why instead of an Epley docs suggested me the more "general" Brandt Darhoff exercises, but I still in the blue, cause I feel like my recovery and new bouts feel almost spontaneous, maybe MAV, I don't know.

I got a second VNG with caloric test included and that showed actual improvement, don't know how, even as I still feel almost the same than two years ago when I took my first test.

So they blame BPPV for my bouts, and I'm just beginning my sets to see what happens, still today I feel foggy unsteady and dizzy again, and much like you, bending seems my favorite dizzy trigger...

Anyway, in your case, I would take all set of tests again,including caloric this time, BPPV exercises and even MAV drugs(if prescribed) before I'd even think on having an injection into the ear.

Search for alternatives, since as you've mentioned, there's no hearing loss, and even with problems, like me, you're still able to go on with your life, so unless there's a clear and proven reason for that procedure, I'd stay away from it.

Hi Mac
I would really urge you to get the caloric test done, if you do have a vestibular injury I think it is one of the tests that tells them which side is damaged, whether it is unilateral (most common) or bilateral (rare). Of course, no test is perfect but if this is well done by someone who is experienced at doing it I think it gives the specialist good clues to what might be going on.

Hi,

Thanks everyone for your replies.

I think that the reason why I didn't ask so many of the questions I wanted to ask was because I got such a shock at what he was suggesting! Once he mentioned the CAT scan my mind went a little blank as I have never been offered one in the three year period since this all started, and my mind went into overdrive. And, then when he started saying he was going to inject my ears, well, that was enough for me!

Anyone know what they will be able to pick up on a cat scan. I know an MRI is much better but there is no way I could bear to be in that tube!!!!

Does anyone also know what the purpose of injecting steroids into your ear might be, is it because it is an anti inflammotary? I am thinking of steroids used to treat asthma because it stops the inflammation of the airways. Honestly I could have kicked myself when I came out because I just sat there like a dummy and really wasted my time, my fault of course. I think that might have been because he didn't really ask me anything either. All he asked was whether my dizziness was like the world was spinning or inside my head dizziness. Didn't give any advice or anything.

I will of course have the CAT scan but I really don't think this is a route I will take with the injections. Jaxzilla - you are so right in that there is no going back and I could end up worse than I am now. Stargrave, you are also right in that I do have a good quality of life. At times it is awful when you have to put up with this nonsense on a daily basis but I am still able to function and do most of the stuff I did before.

Dollydd and snh39 - there is no chance of me having this caloric test done and I wasn't offered any further testing like that anyway. I am such a chicken! I had three kids by natural childbirth but anything like this and I run a mile!!!

Stargrave - doesn't BPPV happen when you are turning over in bed? Whilst I often wake up through the night feeling slightly dizzy it is not because I have turned over and doesn't happen if I do turn over.

MAV could be a possiblity because I also get weird feelings in my head, though again not constantly. All in all it makes you wonder why all these reasons why this could be happening are not even mentioned at the ENT - maybe they just don't have the time for you.

Take care

Mac2

Mac2--

It can be hard to go through testing, especially when one feels weird anyway, but in case you pursue some of the tests...

I recently had an MRI and unfortunately they sent me to a closed MRI place, which did involve a tube. However, you can--and should!--request an open MRI, which is not so tube-like and is much better for those with claustrophobia. I persevered through the test, although I was quite nervous about it. It was fine...just weird noises. I kept my eyes closed throughout.

I was also afraid of the caloric test, but I did it anyway b/c I was desperate to know what was wrong with me. It involves only 30 seconds of intense dizziness on each side. The dizzy time is very short and stops quickly.

--Violet

Oops...forgot to add that the CAT/CT scans and MRIs can pick up things like multiple sclerosis and stroke; I think CT scans are better for stroke, while MRIs are more sensitive and can better detect MS problems...this is just what I've picked up along the way; I haven't researched it a great deal.

--Violet

Hi Mac.

BPPV is tricky, because compensations happens so fast that it can mask it pretty well, and you don't need the "big" calcium rocks moving in the wrong place in there to feel ill, the sole debris from them can cause trouble, and because of the latency(how long does it takes from the moment you move your head to the moment that the dizzy consequence is felt), you might pass this as something else.

Nevertheless, if like in my case, BPPV tests are inconclusive, maybe MAV could be more the cause, read Violet's post and Charlottes answer on it, it sounds pretty much like us too.

But MAV is even trickier to diagnose, and your doctors have to think it of an option in the firs place, something that my docs didn't do.

I would suggest that you do take your CT scan won't hurt, and agree that you do take a new VNG with he caloric test included, if you're able to do so now, just to get more light on your case.

But stay away from that injections, cause nothing seems to support that in your case, I'd try everything, including vodoo first. ;)

I'm not against your doc or anything, as I'm not against mine even as they seem uninterested in my case... I just believe that, like many many medics out there, they are having trouble to pinpoint this junk correctly, much as we all have had in here.

Mac,
It sounds like the ENT you saw just wasn't very helpful. I've gone through 3. By the time they could fit me in their schedules, enough time would pass and things would settle and my dizziness wasn't as severe. So when I got to the office visit, they couldn't find anything.

It was only when I went to a vestibular PT that the PT found what the ENT was looking for. In PT, they bring it all out so to speak, when they have you move in certain positions. And unless you're at the ENT's right when you're having a spell of dizziness, they may not catch anything on tests or by seeing you. That's been my experience anyway.

Long story short, you might want another ENT. A second opinion. Ask them if they can see you for a little longer appointment.

You may not have nystagmus or BPPV. A caloric test will determine more about what you might have.

Another thing to try would be to get an ENT to suggest a vestibular PT. I've found that I get more answers from working with both. If the PT finds things like nystagmus, they can tell the ENT and you can re-test if needed.

It's very upsetting, I've been through it. If the specialists like ENT's or Neurologists don't have findings on their tests, they throw drugs at you, make wild suggestions like steroids or tell you they can't help you, tell you to wait it out and come back later.

If you can find an advocate of some kind, someone who will talk to the ENT's for you, like a PT, it can go a long way.

The MRI as far as I know is to determine only the more serious things like stroke, MS, blod clot, that type of thing. They use it to rule out more life-threatening issues. I don't know if they use MRI's or CAT scans for more benign things like seeing if you have crystals in your ear or other inner ear difficulties. ***Maybe someone could write in on what they know regarding uses of CT vs. MRI for benign findings.

If you haven't had an MRI it might be worth doing. It does help to have a sedative if you're claustrophobic, even if it's an open MRI.

The caloric, just a head's up....not fun. It's impossible not to freak out it seems. But just know the dizzy spell you have, however severe, will pass. I've been through one, and couldn't finish so they couldn't use the info. But I'm about to try another one in a few weeks and after all the dizzy spells they put me through in PT over the last few months, I'm better equipt to handle another test. I know now that they don't last, I'll get through it and I'm able to be calmer about it now.

Wow,,,it's amazing the universal experiences people are having that their doctors are not that helpful in diagnosing their problems or treating their symptoms.

Hang in there, Mac. Let us know how you're getting on.

Hi

Just to say thanks to you all for your input - everything has been taken onboard.

Mac2

Subs or Scott do you have any thoughts about this procedure?

Mac

Can I ask why you are seeing an ENT instead of a neurotologist? Are there none in your city?

Your ENT may not have even mentioned MAV because there's a widespread perception that ENTs don't want to acknowledge that the problem may not be something they can cut out, plug up, or inject you with something to fix it. I can't imagine what is going through their head suggesting this treatment when you haven't experienced rotational vertigo, and none of your symptoms are inconsistent with something as simple as migraine.

I would strongly advise against it, until you have at least seen a neurotologist (travel if you have to, to see one of the top shelf ones), especially considering that it doesn't sound like the dizziness is preventing you from living a normal life at the moment.

I know someone that had it done for Meneires, worked very well for them, but she was told the success rate was only about 70%

Hope that helps.

x

Sheriff

Yes that does help because I just don't know of anyone who has had this procedure done, and have not seen it mentioned on here.

Admw - you are right in that the dizziness does not totally effect my life but I have had three relapses over the last three years during which I am totally unable to work or live my life normally. Between these times I get on with things, some days are worse than others, but probably more good times than bad. You are also right about the ENT - my experience with them has been rubbish so far and I do not trust them. I too cannot understand why he was so quick to suggest this injection procedure without having fully discussed my symptoms with me. They rush you in and rush you out.

Also, I have never looked into seeing a neurotologist mainly because of the cost involved. The thought of that is enough to send anyone dizzy!!

Thanks.

Mac2

well all I can tell you further is that she had to give up working before and now works full time again, she is in the UK and had it done at a hospital in B'ham, the surgeon didnt want to do it because of risks but she persuaded him to do it and doesnt regret the decision at all but she was diagnosed with meneires and had suffered continually for 5 years with it.

xx

Also, I have never looked into seeing a neurotologist mainly because of the cost involved. The thought of that is enough to send anyone dizzy!!


Mac2
Hi Mac
ask your gp to refer you to a neuro-otologist on the NHS. I don't know what might be available in Newcastle but there is a whole department of neuro-otologists at The National Hospital for Neurology and Neurosurgery in London. I asked for the referral last November and I had the appointment less than 4 weeks later. They were fantastic. They also told me that apart from them there was a very good facility in Leicester but I guess it is probably easier for you to get to London.

Hi Mac,

I have had steroid injections into the inner ear, by a number of different methods. I have had injections directly into the inner ear, steroid perfusion of the inner ear, and also had a grommet inserted at one stage and I then put steroid drops in myself. I developed tinnitus and dizziness after a knock on the head a few years ago and tried lots of different things. The steroids did help initially, but later on they were no longer helpful. From what I have read, the benefits tend to be temporary. To have an ongoing effect in many cases you need to have repeated injections. I think this might be why your ENT suggested a grommet, to give easy access for further injections.

As far as I know, the research suggests that steroid injections into the inner ear are safe: they are not toxic to the ear. Sometimes other drugs, which are toxic to the ear and are designed to destroy part of the vestibular system, are used in conditions like Meniere's. I would definitely steer clear of those unless it is totally 100% clear that you have Meniere's and that nothing else has worked.

But I agree, before you do anything like this, you should get a second opinion. But be prepared, it is likely that everyone you see will have different advice for you.

Hi,


Sheriff56 - I am so glad your friend has had success with this procedure but the more I think about it the more I don't understand why my consultant wants me to go down this road. I certainly do not have menieres and I don't suffer from severe vertigo. I have been doing a little research and these seem to be the main reasons for having this done.

Dollydd - I shall keep that in mind about my gp referring me - isn't it a shame that you aren't automatically referred to a specialist when you go over a certain time limit of suffering?

Rob - are you still having these injections or have you given up? What are your symptoms now? Does the dizziness get worse when it returns?

Thanks.

Mac2

Hi Mac,

I have given up on the injections. When I first had them, they gave me three months with no symptoms. I know that sounds like a short time but it was a miracle. Then they eventually didn't help any more. The dizziness sometimes did get worse temporarily after the steroid injections wore off. It was like a rebound effect.

My symptoms are mainly visual. I am motion sensitive and tracking things with my eyes causes dizziness, nausea and eye soreness. I have trouble keeping my eyes fixed on something. I have difficulty keeping my balance in the dark. I have tinnitus mainly on the left side.

My neurologist thinks that initially I had some inflammatory vestibulitis triggered by the accident. But he feels that now my main problems are related to compensation.

Hi Rob

Thanks so much for your information. I have at this point pretty much decided not to have this procedure done, mainly because I don't want anything to make me worse. Going through what I and many others here have been through, you really don't want to set it all off again! Most of the time I suffer mild dizziness and slight balance problems but I definitely would not want to have this rebound effect every three months like you have experienced, it just doesn't seem worth it.

I am starting to think that my eyes are the problem at this moment in time as I am feeling as if sometimes they are jumping slightly when I am tracking something. Some of my worst dizzies at the moment are when I am in the car. I do not drive, but can feel really yukky and then get out of the car and feel fine! I also suffer slight nausea with my dizziness but have never actually been sick.

I think its maybe best to get on with life and try and ignore this dizzy monster, though it can be hellish tough at times!

Mac2

If you haven't already read it here is an article on the treatment, referred on the sticky

http://www.dizziness-and-balance.com/treatment/it-steroids.htm

thanks stargrave, have already had a look at this site and it is pretty good!