ETD update

Hello Anne,Just seen your response to Merlin,I hope you get more encouragement from your ENT advisors than I've had from mine.Please keep me advised of any progress you make.It would be most appreciated.

Michael

Saline Ear Wash....I thought you wanted Balloon Dilation Michael.  Never put water in your ears when they are blocked...or any other time come to that.  Saline water or the NeilMed NASAL RINSE is fine for the nose...not ears !!

To give you some relief ask for a 20 day reducing course of Prednisolone.  I finished my course recently and everything is wonderful.  Clear ears, sinus good, no headaches from sinus and all the inflammation has gone.....een smell and taste has returned.  However, I'm not holding my breath for this to be permanent, as I suffer allergies and sinus, so will probably all build back up again.  But to get a few months relief from this wretched ETD is just great.  A short course every other year (than I have) I don't think will have any long lasting affect.

Anne

Maybe something was lost in the communication Anne.Both saline wash & ballooon dilation were mentioned to me by my GP.The saline dilation is where you suck up the saline through your nose & then blow it out.The balloon dilation is where a balloon like  object is inserted somehow into the Eustacion Tube & then expanded to allow the tube to function.

Kind Regards

Michael

Ok, never heard of the first one, but Dilation is defo done here.

Anne

Would you care to share your knowledge of where I might go.Either NHS or privately.

What part of England do you live in  Michael ?

You could ask your GP for a referral letter to your local hospital to see a ENT consultant and discuss this option with him.  I'm lucky that my NHS hospital isn't too foar away and our private hospital is just up the road.  I see my NHS consultant privately too when things get really bad with my ears.  Happily, they are still good at the moment.  I will be disussing Balloon Dilation on my next NHS apptointment in October this year.

Anne

To Anne5078. I live in the largest city in Yorkshire & I've seen not only my GP,but 3 ENT specialist.

1.You have ETD.There is no treatment or cure.

2.There is no evidence of you having ETD.

3.A few incoherent mumbles & not really sure.

Perhaps you cvan see the problem/

Wow, absolutely.  It looks as though you need to go private.  I can't believe with constantly blocked ears that they haven't diagnosed ETD.  Mine told me I had it years ago.  Are you still suffering and what have you been prescribed so far ??

Anne

I've been NHS & privately & met with the same responses.So I guess I'm stuffed.That is unless some kind person here cam point me in another direction.

Michael, have you had a tympanogram test?  They can normally tell what is going on from that.  I would keep persevering, there are a few surgeons in UK who carry out balloon dilation for ETD but not everybody is suitable and it is not always successful.  Not sure who in your area but maybe the balloon manufacturers can put you in touch with one locally.  Rarely insurance companies cover it as it's not an approved procedure by NICE, they seem to want more evidence of its success before they give it a procedure code, so you would likely have to pay yourself. It does carry risks as you mention as it's done under general and the carotid artery is very close to the ET I believe and hence risk of stroke but you would need to discuss with the surgeon. If it is ETD maybe a tube would relieve your symptoms, apologies if I missed you had already tried those.

Dear Carol,How kind of you to make the comments you have done.I've had a CT scan & another scan (can't recall the name).I've also been tested by two audiologists.I'm quite happt to pay privately but  all of my enquitries have produced nothing.Eleven years ago I was treated with radiation & chemotherapy on my neck which thankfully worked.Now

 the medics are saying PERHAPS that's the reason that my eustacian tube doesn't function as it should.I'm eleven years older & they say that most my age have hearing problems.

Hi Michael, I imagine the other scan was an MRI.  If both scans didn't show anything then it may just be down to your treatment or even perhaps just 'bad luck' as I've been told. Did they say that you had negative pressure in your middle ear? If so a grommet should equalise the pressure and you wouldn't feel so bunged up. I only have a problem with one ear and it keeps filling with fluid, along with the clicking and tinnitus. A short term grommet gave some relief for about 8 months but after it came out it filled with fluid again.  I found somebody in Cambridge who does the balloon dilation but not sure if I'm allowed to mention the name on this site. Also my ENT has offered to refer me to somebody who does it in London but thinks there is only a slim chance it would work for me. I've decided to go with a long term grommet instead although it doesn't address the underlying cause and I may be back to square one after that comes out.

Morning Michael,  I just re-read you post and I think you meant Saline Nose wash and not Ear wash.  I use NeilMed Sinus Nasal Rinse every morning, just to wash out any potential allergens....not sure it does much for the ear though.  I'm still good after finishing the Prednisolone Steroid tablets and you really should try them just to get some relief from this awful problem.  It's absolutely wonderful to be able to smell and taste after all these years.  However, I imagine once the steroids are out of my system and inflammation starts all over again I will be back to sqare one.  But to have relief for how ever long it just great.  No ear blocked, no sinus issues and no headaches.  Would be great if this time things stayed as they are, but suffering allergies, sinusitis, Tinnitus and ETD I'll not be holding my breath.  As for taking holidays abroad again, not sure that will happen due to my ear problem and the flights.

Anne

Saline nose wash  I did but didn't like at all & found itto be no use to me at all.I've tried inhaling with Olbas oil which helps marginally for a short time.

Why don't you just get yourself put on some Prednisolone ?  they work wonders and I'm into my 4th week of feeling brilliant.  If you were to be prescribed them, as I've said so many times before it has to be a least a 20 day reducing course for them to work.

Anne

Can you tell me Anne what exactly Prednisilone is ?I think that I've discussed it with my GP some time ago & was advised it wasn't suitable for my condition.If I recall correctly she told me that it is a muscle relaxent.

anne have you experienced any side effects while taking prednisolone? Steroids are serious drugs and should not be taken lightly. They can really do a number on the adrenal glands, even a short course depending on how sensitive you are to the drug.

Hi Michael,  Firstly, it's the best tablet to get rid of eustachian tubes being stuck together.  I've used it on and off for years, but only quick short courses each time.  To use for years and years, like some peole have to (and I know two people that have been on them for  two years now) that's when you could run the risk of diabetes, brittle bones, but only very long courses.  Some people have no choice but to have to take them.  My sister in-law for example.  She suffers Rhumatoid Arthritis and is in a great deal of pai, as is my neighbour.  They dampen down all the inflammation, which has happened to me with my ETD.  They are not a muscle relaxant.  Google them if you're worried, but when my ears get bad that I cant stand it any longer I am prescribed them.  I'm still good a month on now.  Tell you doctor you can't stand it any longer and that you need them.  But remember if your ears have been blocked for a long time you will definitely need a 20 day course like I had.

Good luck

Anne

Forgot to menion.  the only side affect most people experience is insomnia and a little weight gain.  I put on 3lbs the 3 weeks I was taking them and really found it hard to drop off to sleep.  However, once they have finished everything resumes back to normal.  I think those two side affects is a small price to pay for clear ears.  I'm just hoping I stay this way and it doesn't all build up again from allergies and sinus problem.  I continued to use my Flixonase Aqueous Nasal spray while taking them and I think that helped too.  Many years ago when my asthma was bad I had to take them then too and within a day I'd stopped wheezing and could breath again and sleep.  Thankfully, my asthma is completely controlled these days.

Anne

DS123, can you see my reply to Michael.  He ask me the same question. No side affects for me except while on them I struggled to get to sleep and gained a little weight too.  However, now I finished them everything is back to normal.  Just reading leaflet that came with the tablets and there is nothing in it referring to the adrenal glands.  I really thinks you have to be taking them for very long periods for them to cause a problem.  They talk about mental health problems, but that only happens to 5 in every hundred people.  If you're not happy about taking them, don't.  But it's the only thing that will sort out ETD.  If you wait for it to go away on it's own, it can potentially take a very long time.

Anne

Hi again,  Tha Adrenal glands are small glands that are on top of each kidney. They produse hormones that we can't live without.  One of which is Cortisol, which  helps us respond to stress.  The gland can make too much or not enough.  Tests have proved, despie previous report of Prednisolone interferin in Mass Spectrometry assays for cortisol, this was found not to be the case in their assay.  This means mass spectronetry assay can give reliable results on people on prednisolone therapy.

Anne

Sorry I hit the wrong keys. The Adrenal glands and the word produce. and despite, all of which were typed incorrectly

Hello again Anne.I used to have a sleeping problem,but now I;ve been to meditation classes & it's helped a lot.Also I take half a Zopiclone tablet about 20 minutes before retiring .So between them I appear to have that problem under control.Two things to remember 1.Don't go to bed too early.2.Zopiclone is habit forming so don't use it for too long.It's prescription only,but works well & doesn't leave me with a hung over feeling.

Hi, so long as you don't suffer from depression, I think your GP will prescribe them if you tell him you can't stand the blocked ears anymore.  Don't know your age, but I've been having trouble sleeping for a few years now too and most people my age complain of the same.  If I take a Citrizine a couple of hours before I go to bed, I find they work well and make me sleep.  So I'm killing 2 birds with one stone.  they help with allergies and help me sleep too !!  Bad day for pollen in my area today.  Weather been so warm and sunny, so not complaining.

Anne