middle ear prosthesis outcome following an ossicular reconstruction and cholestatomeas

[Team_Edwards]

Let me give a bit of background first, and I'll put my actual question at the bottom.  I have had several (7) surgeries over the last 5 years due to reoccuring cholestatomeas (congenital) in my middle ear.  I've had a significant amount of ear damage due to the cysts, losing many bones of hearing as well as causing some dura sac exposure.  The last surgery, they discovered that they finally had not returned, so they did an ossicular reconstruction on my ear to resolve partial deafness caused by years of ear trauma.  They used a titanium middle ear prosthesis.  Recovery went normally.  I immediately noticed that my hearing was better than it'd ever been.  Sometimes, it'd come in and out, which my ENT said was normal.  Overall, things seemed good.  When I did follow up hearing tests, it showed that my hearing had improved from where it was before but was still not as good as they wanted it to be.  It was still below the line of "normal" hearing.  My ENT felt like my ear would only continue improving though and that more hearing would be restored within a few months.  I had no complaints as being below normal was still the best I'd ever heard!  lol.

Well, about 3 months after the surgery, I started having alot of ear pain and some bloody discharge from my ear.  I also noticed my hearing had went back down to what it was prior to surgery.  I saw my ENT, and he thought I had a light ear infection.  He gave me antibiotic ear drops.  Took a few weeks, but it cleared up and my hearing went back to a noticeable higher level.  About once every two weeks to a month since then, I notice ear pain and will have bleeding again.  Whenever my ear is starting to hurt, my hearing decreases drastically.  Blood always seems to accompany the pain and hearing issues.  Sometimes its mixed in with yellow pus-like drainage, other times its just bright red, straight up blood without any pus.  I still have some ear drops, so I've medicated myself and most of the time, it seems to resolve the issue.  

My question is though after 9 months following an ossicular reconstruction, is it normal for me to continue getting these problems?  Again, I'm in the boat where my ear is aching tremendously, I've noticed a decrease in hearing, and I'm bleeding from my ear.  Within the last 6 months -- this is probably the 7th or 8th time that this has resurfaced.  I've tried staying on the ear drops a full month and it'll get all the way better, but then seems to go right back into the same cycle again a month later. My husband thinks that the prosthesis itself could be causing the bleeding. Could that be the case?  Or could this be a sign of more cholestatomeas?  I've definitely had my share of them reoccurring.  However, the pain I've had hasn't been as severe as what I've experienced in relation to the cholestatomeas and I haven't had the foul smelling drainage also associated with previous bouts of them.  

I have made an appointment with my ENT, but he's the best in a small area and so the earliest I can see him is in two and a half weeks.  The fun thing is I'm 8 months pregnant and due in 4 1/2 weeks, so I'm anxious as the next few weeks will be unpredictable.  

Does anyone have any thoughts?  Thanks in advance.  I appreciate you reading through my lengthy explanation.

[kymber23]

Hi,
It looks like your original question was posted about 4 years ago. I had the same implant and recently experiences some of the same symptoms. I am wondering how you are doing? Did anything work to relieve your symptoms?

[Wear/a/Jimmy]

My thoughts....  I would strongly consider haveing the intire cavity cleaned out including the hardware. Heal up good and well, and then consider either a BAHA hearing aid or a air conductive (standard) type hearing aid.

The problem with a air conductive is that it would be inserted into your ear canal. People with your type of middle ear disorder usually have periodic discharge so sticking and ear mold in the ear becomes a problem. Also insurance rarely cover such heairng aids.

A BAHA comes with its own set of issues, but it is sometimes the best choice for people in your situation.

http://www.umm.edu/otolaryngology/baha.htm

To expect normal hearing ability from a reconstructed middle ear cavity is ubsurd, and your doctor really should have given you realistic expectations.