I have similar hearing problems. I haven't noticed any improvement by changing body positions, etc. I've just learned to live with it, as it occurs intermittently. It is annoying.
Likes: 0
Wannabe jet pilot
I have similar hearing problems. I haven't noticed any improvement by changing body positions, etc. I've just learned to live with it, as it occurs intermittently. It is annoying.
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
Phil Berggren, dx 2003
I would go see an ENT right away. You prob need tubes in your ears to let the fluid drain out.
Phil Berggren, dx 2003
addicted user ;-)
Hi Steph, welcome to the forum. great place with amazing people.
I thought that tubes are not alowed to weggies ?Originally Posted by pberggren1
the fluid in my ears drain out by elevating pred dosage.
Last edited by Alysia; 08-01-2013 at 04:16 AM.
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
Phil Berggren, dx 2003
Oh no, many Weggies get drainage grommets (tubes) in the ear drums to help the fluid drain out.
Phil Berggren, dx 2003
Registered Member
In some cases, the fluid is too solidified to drain, right? That's what they call glue ear. I think that is the case with me, as my ENT told me that ear tubes wouldn't work. I guess I didn't try hard enough at the time to get a distinct reason. There was a time earlier, prior to my WG dx, when he was considering ear tubes for me, but both ear drums had been perforated on their own due to infection, and he either wanted to give them time to heal properly before puncturing them again, or in the case of one ear, there was a lot of thick scar tissue from the healing and he wanted to see if it would break down and get thinner before attempting tubes. So there are a lot of considerations, and it is possible that I'm misunderstanding some of what my ENT said, or didn't say, since it was a long time ago.
Anne, dx'ed April 2011
Phil Berggren, dx 2003
That is correct Anne. That is what I had. Glue ear.
Phil Berggren, dx 2003
Registered Member
Phil, did the glue ear ever resolve itself? Or was anything able to be done about it?
Anne, dx'ed April 2011
Phil Berggren, dx 2003
No, it just got worse. Then I had severe nerve damage from the Wegs too. Then nerve damage from an antibiotic that left me 100% deaf. Then I got cochlear implants.
Phil Berggren, dx 2003
Registered Member
So is the "glue" still in there? I have some nerve damage in one ear from the big ear infection at start of Wegs. Hmm, I wonder if an antibiotic could have had caused that nerve damage. They tried 4 different ones, the third being Levaquin. Then there was a 5 day course of Rocephin (I think) by IV to prevent mastoiditis. I came out of all that with pretty bad hearing but could get by without aids. Hearing got better after that in both ears, since most of it was conductive loss. The glue ear, if I have it, came later, and hearing got worse. For awhile I could pop my ears and hear better. Now can't pop them, and hearing got a little worse after dx and then sort of leveled off after I got the aids. I can hear some without the aids, but it's pretty bad.
Anne, dx'ed April 2011
Registered Member
Hi Brendan, amazing about your grandfather coming from Kilmallock, what was his name and do you still have rellies living here? I'm interested in the why's and where's of why I've come down with this and would like to try to meet as many sufferers in Ireland as I can manage - starting in the south west if possible. Do you know of any others in Dublin? I was at the specialist clinic yesterday and I have to say that the results were very encouraging and my steroid dose was reduced but the methotrexate was increased. I'm not really happy about immune suppressants but will stick with them for the time being. The only thing that was different about 2013 from other years in my life up to being diagnosed was that I had far too many colds from Christmas to May and then had all the symptoms of hay fever which of course turned out to be GPA (as it's now called partly due I think to Dr. Wegner having too many Nazi connections!!!). apart from that I used roundup in my new poly tunnel there was no difference to previous years. How about you? Hearing: I'm getting more popping and relief from echo this morning and am attributing this to the lower dose of steroids but I could be wrong and am looking forward to attending the Ear clinic in a couple of weeks to see what they say and then the eye specialist on Aug 30th. I have to give fair credit to my medical team who yesterday did express their astonishment at the improvement in the sight of my right eye - which they had declared as unrecoverable - but also their genuine delight for me. Many thanks and looking forward to hearing more in the future
Posting Permissions
Reply With Quote
Bookmarks