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Thread: Hearing Problems, Update 1

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    Default Hearing Problems, Update 1

    In case anyone is interested in the least...

    Previously:
    Stated I had hearing problems on both ears (lost about 50% hearing), stuffed up nose with blood in mucous. Had for about 3 months. That's the quick and simple explanation.

    Now: Previously called my Pulmonologist and spoke to a nurse about setting up an appointment due to the symptoms I was having. She said they likely wouldn't be able to help me because their expertise is in lung issues. I will probably still visit them in the near future though because I am doing a lot of coughing... feels like I'm coughing my lungs out... and it it feels like I may be coughing up fluid.

    Visited an ENT about a week ago... geez was that expensive without health insurance.... medication wasn't all that cheap either for generic drugs. After having my ears and nose visually inspected, and after a hearing test (was that really necessary?? I already told you I couldn't hear crap!), I was diagnosed as having moderate deafness due to fluid buildup in my ears, that was keeping my ear drums expanded and not allowing them to expand and contract as they should. I was told that if I took some medication for a week my ears would return to normal.

    I've taken the medication for about a week now and just finished it up. My left ear has improved a bit and I can hear people well enough on it that I don't need to constantly tell them "What did you say? Can you say that again" repeatedly after they say something at normal speaking volume. Still feel some discomfort in it. Ringing in ears hasn't gone away. The left side of my nose still gets stuffed a lot and there is still always blood in the mucous when I blow it. My right ear doesn't seem to have improved at all. Still better than permanent deafness.

    I have a follow-up to see the ENT in about a week. I'm a bit dejected that I need to pay an additional $80 for something that will probably just amount to basically saying "Hi" and being prescribed the same drugs again.....

    Edit, 12-05-14, 5:19 EST:
    Link to first thread that disscussed the problems I started with: http://www.wegeners-granulomatosis.c...-problems.html
    Last edited by B_in_Florida; 12-05-2014 at 10:22 PM. Reason: Added link to first thread
    Just call me "B".
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    Hey B,

    You may want to try a saline nasal rinse to clear the crusties, etc. out of your nose. You can get a neti pot and saline rinse tablets at your local drugstore. Shouldn't cost you more than $15.

    I'm a little surprised the ENT didn't lance your eardrums and insert drainage tubes. Perhaps the drugs will clear the fluid out. Hope you don't get to the point where you need hearing aids. Then, you're talking serious money - $3-$6k each.

    Good luck.
    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

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    B in Florida
    I had a similar problem. I went to three different ENT'S and finally found the right one! I had to get my ears drained and tubes put in my ears. Some Wegeners patients have problems with their ears (the natural tubes in your ears close due to the inflammation, so they can't drain!) If I were you I would get this checked out, it worked for me. Good luck to you!😊

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    Well, I'm hoping it doesn't go that far. I plan to go step by step as with as non-invasive solutions as possible if I can.

    Pete, I've thought about a nasal drain. Don't like the idea of shoving or spraying something into my nose though. I read you can make your own solution with salt, water, and something else. I might post the link to that later if I can find it.
    Just call me "B".
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    Hi B and welcome.

    A sinus rinse is basically a day to day routine for most weggies - it helps us breathe a bit better I would suggest that you get used to the idea of spraying water solutions in your nose - it does help.

    My right ear was totally deaf until I started taking prednisone and also using a steroid nasal spray and doing the rinses.
    I have the hearing back, but not 100%. I have a hearing test this Friday to see what the level is at.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Ok, I said I might post this link, so here it is. You could actually find it yourself pretty quick. Might save you the $15 by doing it yourself, only takes some salt and baking soda, plus maybe a syringe.

    Saltwater Washes (Nasal Saline Lavage or Irrigation) for Sinusitis-Topic Overview

    Edit: Slide 11 of the following link says not to do a nasal rinse if you have an ear infection, so I think I'm going to hold off for now. I have a doctor's appointment shortly anyway, so I'll just wait to ask him if it's OK.
    http://www.webmd.com/allergies/ss/sl...sal-irrigation
    Last edited by B_in_Florida; 11-19-2014 at 11:22 PM.
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    oh, yeah: I previously said that I didn't know why they needed me to take a hearing test. Of course they needed to be able to measure how effective the treatment is or how much my hearing improved, why else.
    Just call me "B".
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    Ok, I was just to the doctor, so I thought I'd post an update. I wonder, should I continue this thread, or should I post a "Hearing Problems, Update 2" thread? That's what I was originally going to do. I thought it might make it easier so people didn't need to read through all the comments, but thought maybe that would actually make it harder for people to keep track of them. Leave your opinion/s.
    Last edited by B_in_Florida; 11-21-2014 at 12:52 PM.
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    Quote Originally Posted by B_in_Florida View Post
    Ok, I was just to the doctor, so I thought I'd post an update. I wonder, should I continue this thread, or should I post a "Hearing Problems, Update 2" thread? That's what I was originally going to do. I thought it might make it easier so people didn't need to read through all the comments, but thought maybe that would actually make it harder for people to keep track of them. Leave your opinion/s.
    My opinion is that it is fine to continue in this thread. You said you were going to see the ENT again in about a week, which I guess you just did, and I'd like to hear what he said. By staying here, there will be some continuity. My two cents worth.
    Anne, dx'ed April 2011

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    Ok. so yeah, I though this would be better for continuity too, but I thought my profile would show the threads I created to make it easier to find - then you'd kinda be able to read them like a book (ie. Chapter 1,2, etc.)

    So: Yesterday I was to the ENT, had a hearing test done, then was told by the technician that my hearing hadn't really changed. It had become a bit better with the medication (one side) but my ears gradually filled up with fluid again and were back to the way they were before by the time I visited the doctor.

    My doc. told me that the one ear that improved didn't seem as cloudy anymore. I was told that these problems are very likely WG related and given the option to: A) Continue on Sudafed only and see how that works out, B) have an incision made in my eardrums and have the fluid suctioned out, and B) have the ears suctioned out and small drainage tubes inserted that should last 6-12 months. I was told that there was a small chance that the incisions didn't heal up completely, and if I had tubes inserted that water could run into my ears during swimming or bathing and cause an infection, so I was very reluctant about both options (don't know why small tubes that only allow fluid to drain outward don't exist for ears, they exist for other things).

    So because I was really reluctant about the incision options and worried about how they would turn out, I decided to continue on the medication and have just one ear suctioned out to see how that works out. I chose to have the incision and suctioning done on the one side that was worse and was used mainly for phone conversations, and my hearing became significantly better on that side. Was a bit uncomfortable having it done, but it only took about 5-10 minutes, and he did it for free (very thankful about that! I just don't have the money for any expensive procedures, and I know he could have charged me).

    I forgot to bring up my nose problems again: still stuffed, bleeds when blown (usually only 1 side), sometimes bleeds on its own - I feel like such a putz for not mentioning it to the doc. I also have pain on my nose sometimes just from the glasses resting on the bridge of my nose. I'm told (by people in general) that the ears and nose are somehow connected, so I'm worried that the nose congestion is somehow responsible for fluid not draining properly (don't know if that's a stupid theory).

    Today, the ear that was suctioned out seems to have a bit of fluid buildup again. I noticed it when I lean forwards. When I lean forwards, it feels a little "stuffed up" again, like fluid ran into it. I still hear a ton better, but I predict it will be worse again by the end of next week big bummer.

    I was told that I can put wax earplugs* in my ears when I swim/bathe if I chose to put in tubes, but I always submerge my head up to my nose/mouth when I take a bath, so having to put in those earplugs every time seems like a HUGE inconvenience to me, even if it does help my hearing a lot.



    *I wasn't told they needed to be wax, but those are the ones I was given to block out water.
    Last edited by B_in_Florida; 11-22-2014 at 07:13 AM. Reason: for grammar, spelling, and ease of reading.
    Just call me "B".
    ---
    "How's it going?"
    "Like crap."

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