PDA

View Full Version : Ear Grommets and Drains.



Jack
06-23-2009, 11:16 PM
I've decided that it is time to do something about my hearing loss as it is becoming a problem with the rest of the family. I need the TV turned up loud and have to ask them to repeat everything they say.:(

I know from my symptoms and also a recent MRI scan that the problem is due to fluid or granuloma in my middle ear so I'm expecting the ENT consultant to recommend grommets (who knows? I may be wrong!). I'd be very interested to hear anyone's experience with these. How do they fit them? Do they work? Are there alternatives?

Thanks in advance. :)

Geoff
06-24-2009, 02:54 AM
Like you Jack... I am 'all ears' to hear of anyones experiences with regards to treatment with hearing. Reading this site I realise how lucky I am with regards to the effect of WG on me personally. The very first and continuing syptom has been my hearing which has just recently deteriorated. High pitch whistling and a built up of pressure within the ear has proved to be a bit of a nightmare.

pberggren1
06-24-2009, 07:50 AM
I've had 3 sets of tubes put in my ear drums Jack. They were all done in 2003, the year I was diagnosed with WG. None of them did any good. The first set the ENT put in he said the fluid in the ear was quite thick and the next 2 he said it was like concrete. My hearing loss is sensorineural and not conductive. It may have been conductive early on but the granulomas got to the nerves and damaged them. I have had hearing aids since June of 2005. They help alot. Hopefully you have a good ENT and he will order a complete audiometric work-up.

Jack
07-18-2009, 12:02 AM
It looks like I'm going to have to discover the answer to my own question.
I saw the ENT consultant today and he talked me into trying grommets before giving up and going for hearing aids. It will mean a short spell under general anesthetic which I'm not too pleased about, but he says that I can discuss my concerns with the anesthetist before hand.
Just waiting for the date now.

Sangye
07-18-2009, 12:25 AM
I hope it goes well for you, Jack. Let us know when it's scheduled.

Here in the US, we use the term "ear tubes" instead of "grommets." Whenever I see grommets, I think of boat sails. You thinking of taking those ears out on the high seas? :D

Jack
07-18-2009, 12:46 AM
The holes in boat sails are more often called eyelets over here.
I have perfectly formed ears and so don't have problems in high winds. :D

I'll let you know when I get my appointment. I doubt that I'll be a high priority case.

Doug
07-19-2009, 04:06 AM
Let me add my best wishes for you, too, Jack. As you may remember, I haven't much enthusiasm for ENTs, so I hope your experience with the implantation of grommets/tubes is beneficial, and it opens up some avenues of hope for those with hearing loss due to WG side effects, etc. :)

andrew
07-19-2009, 06:19 AM
Best wishes from me too. I hope you get a date that's not too far away and the operation is a complete success!

Jack
11-21-2009, 06:22 AM
I've been very much in two minds about having this op because the benefits seem uncertain while the risks are very real. I was due to have the op on Monday and went in today for a pre-operative assessment which has made my mind up for me. They don't think I'm fit enough to be operated on unless it was a life threatening situation!

I'm quite glad about this result in a way because it has confirmed my own suspicions while going against the opinion of the ENT surgeon who did not seem to want to discuss very much with me when I last saw him and said everything would be OK.

Looks like its a hearing aid for me instead. Much safer!

Sangye
11-21-2009, 06:37 AM
I think there's always a risk of surgery (any type) causing Wegs to flare, too. Anesthesia is very hard on the body.

It makes sense that hearing aids are a better way for you to go, Jack. Since your Wegs has been in remission for so long, does that mean your hearing loss is stable?

Jack
11-21-2009, 07:09 AM
Hearing loss is stable, but increased when I reduced the pred. The shame is that there does not seem to be much wrong with my ears, but my eustation tubes are acting up and not draining. Just occasionally they will clear and I can hear fine, but only for a few seconds.

I can get hearing aids free on the NHS but they are the very old fashioned, external, analogue ones. I might see how I get on with one of these and if it works well, I'll invest in something more sophisticated.

Doug
11-21-2009, 09:23 AM
I wonder how many weggies put as muich thought into their specific medical needs at a given time. You set a good standard for us all, sir!:)

Anyway, anyone considering surgery of any sort needs to involve the doctor(s) primarily involved in your WG care. I've noted before that getting their business cards and permission for them to discuss your medical status with non-WG treating doctors. Specifically, when you go to that ENT or whatever, note you are a weggie. Most ENTs I've had contact with will say they've dealt with lots of our kind (perhaps- I'm not an ENT doctor fan as you know!), but get a commitment to discuss what they want to do to you surgically with your WG doctors. Any good doctor will be happy to consult with your WG doctors, especially when you are able to provide all the information they need (Dr.'s name, telephone, place of business, etc.). Insist on it. Check up on what they've done the next consultation. If they've followed through, got the opinions of your WG doctors, and all feel you are a candidate for surgery, good. Establish further what the probability of success is for any procedure suggested and whether the one best suited to your needs is covered by your insurance (bastards that they are- ooops!). Or covered 80% with you picking up 20% of $125,000 or some outrage. You need to be your own advocate, to corral and put your brand on each and every doctor with whom you are dealing. It sounds excessive, yet you will find most doctors are cooperative, glad to help you by sharing their knowledge of your condition with other doctors. You'll also find most doctors appreciate it when you come with telephone numbers and names of doctors they need to contact on your behalf. Gad! These people have so much time tied up in paperwork and detail that they are genuinely appreciative when you save them time and effort!

Yes, another Doug rant! Yay! It feels so good!:):):)

jola57
11-22-2009, 05:51 PM
Jack I think I mentioned it once before that I tried small super duper hearing aids that cost over $2000 and they were great. My tinnitus almost vanished and the hearing was much better. The only drawbck was an echo but I was told that it would be adjusted to my hearing and it would be gone.

snooz23
11-23-2009, 01:31 PM
Hi Jola57,

I was wondering if you could let me know the kind, brand of hearing aid? Do you still use them? How long have you had them? I lost my hearing back in April and have getting by using a cheap amplifier device. I would like to get aids but they are not covered by insurance and really debating how much they will help.

However, I am very excited to hear it has helped w/ your tinnitus--that is definitely the most irritating.

Please give me more details if possible. Thanks!

jola57
11-23-2009, 05:07 PM
snooz23, sorry that I gave wrong impression but I don't wear a hearing aid, my loss is 75% in left and 35 in right ear and the tinnitus is in the left ear. I tried the hearing aids and they helped quite a bit but not enough for me to get one. I have adapted quite well and only have problem with ambient sound such as when I am in a crowded restaurant or at an airport. I will go back to the place and ask which one I tested and let you know. If you go to a hearing aid store they should have trial aids that you can take home with you. Take advantage of it and go thru a few before making a decision. What is good for one might not work for another person.

snooz23
11-24-2009, 01:09 PM
Thanks for the clarification and I will definitely try out a few options before jumping into anything. That's why I am kind of on the border...is it really going to be worth the hassle or should I just try to adapt and overcome? I still hope for some good changes w/ remission, etc. Anyway, thanks for the input. Have you had some relief from the ringing, etc.?

Doug
11-25-2009, 03:05 PM
Many times, I think, it comes down to quality of life, snooz23, and how you define it. I still can enjoy music with one good ear because I found I can adjust speakers and my position relative to them so that I get a faux-stereo effect because of sound waves bouncing around the room being reflected back at different speeds depending on what they hit. (What the heck is he talking about!- seriously, I swear I can get a stereo effect hearing music with one ear!) Music is a big thing in my life, so having a near-normal hearing experience with this trick I can't properly describe means I am unlikely to have surgery on my deaf ear when the ENT doctor gives me a 30% chance of success.

I hate fireworks, just the noisy bombs really. Because of post-herpetic neuralgia on the right side of my face (the ear infection was my bonus infection when I had shingles two years ago....), I sleep on my left side, ear in the pillow: I can't hear fireworks around Independence Day! Or dogs barking. Or alarm clocks- I'm retired now anyway, plus my cat tells me when it's time to feed him, i.e. get up- NOW!

I think you are doing the right thing to consider all the options you can. Only you can determine what you want in terms of hearing, what you have to go through to get it, and how much or little success you are willing to risk. Good luck!:)