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Author Topic: Australian Experience 2011  (Read 14949 times)
Royt777
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« on: February 13, 2011, 06:21:56 PM »

Age: late 40's
Location: Melbourne

Symptoms: right ear always a bit deafer about 75% of normal.
                Popping my ears would temporarily relieve pressure and improve hearing (usually just for 2-5 secs)
                In 2009 had perforated ear on a few occasions
               Long term incidence of tinnitus.

Diagnosis:  my GP thought everything was normal
                He didn't think the ear drum was perforated.
                Referred me to ENT after I insisted
                 That ENT didn't think there was any perforation either (yet I could blow air
                thru my ear!)

                I went to a different GP and got referred to a local ENT specialist practice
                that I requested.
                I'd visited years earlier.
                Met with a younger Doc. He listened, understood and did an examination.
                 Identified it right off. Got a CT Scan done which showed the evidence.
                My original GP later said he'd only known of one C 'toma in 37 Years. The
                ENT Specialist said it is unusual for a GP to pick it up.

Surgery:     Last week. 2 hours and overnight hospital stay. I had a worse than
                 usual reaction to the anaesthetic (lots of vomiting). So I also took
                Longer in recovery.      
                 He Removed middle bone, and half the outer bone. I think he did some
                 reconstruction at same time.
                 My right ear is currently sticking out more than the left.


Recovery:   One week off work.
     I can hear about 10% in right ear at the moment. I met the surgeon today to checkup. All OK. He removed some of the external packing, but says the rest should dissolve  or fall out in next couple of weeks, and another appointment in 3 weeks will ensure it is all removed (external packing) and everything OK. The internal 'gel' packing should dissolve over a couple of months. Then he thinks I’ll get about 50% of full hearing back.
                I hope that is right.

Next steps:  he said it was worse than initially thought.
                 I need to get the surgery done again in about 9-12 months to check for
                  c'toma recurrence and to more fully reconstruct. That should provide
                  about full return of previous hearing.
                 He also says the right ear should settle back in the next couple of weeks to
                a more normal position – not sticking out.

Cost:        In Australia this surgery cost:
                Surgeon and Theatre: $3600
                Anaesthetist: $1440
                Private hospital bed: $480
                Government benefits (Medicare) and private Heath insurance will cover
              just over half.

Update:     4Weeks after 1st surgery
                      All good. Doc very pleased with surgery and healing.
                      Hearing is recovered to about 50% I think.
                      Next appointment in June.

Question to the readers:
            Was this useful for you?
« Last Edit: March 08, 2011, 05:55:48 AM by Royt777 » Logged
jgoodhue
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« Reply #1 on: March 25, 2011, 07:37:13 PM »

Hi,
Thanks for your post.  I appreciate your up-beat approach, and will try to emulate it.
My surgery was 3 days ago, and
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jgoodhue
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« Reply #2 on: March 25, 2011, 07:58:52 PM »

(continued from above...)

My surgery was 3 days ago, and I am feeling well, but am concerned about whether I'll be able to hear as well as before; I had a small bone replaced with titanium.   Time will tell. 

Also, I found that my taste was affected.  My doctor told me that the "taste nerve" could not be saved, and that for most people this does not cause problems after about 4 months, because the other side takes over.  Orange juice and tomato soup, water and coke, taste okay, but everything else so far tastes very bad.   

At least we all still have life -- that is how I am trying to talk to myself about these changes.   

Hope you are doing well, and your hearing is improving. I wish you luck, and thanks for your positive, factual post.
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Royt777
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« Reply #3 on: March 29, 2011, 04:57:51 AM »

I Hope your recovery is going well.

It is now about 2 months and my hearing is OK and I am pretty much recovered.
I got a statement from the hospital that showed there was an extra $2500 for the Theatre costs I wasn't aware of. fortunately the Health Insurance already cvovered that.

You make an interesting point about taste. My taste buds nerve was NOT cut, but the doctor had to clean around it. I have weird taste. I think the nerve is supposed to recover in about 4 months (from the operation). The things that I don't like to eat are soft foods that have a smooth texture (for some reason). Salty foods and rough texture foods are best. It only affects the the side of my tongue that was operated on.

Another thing I have noticed is that my ear surface skin is strangely sensitive. Any time I touch the skin I get a strange sensation - something like my skin crawling. Only lasts a second. I hope it is related to the nerve damage that will rectify over  the next couple of months.
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Royt777
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« Reply #4 on: August 06, 2011, 11:28:14 PM »

An Update
Its now August and 6+ months since the operation.
Generally, everything is going well.
I have more sensisitivity to noise than I had prior to the operation.
I actually think I can hear better than I could for several years.
But my taste on the operated side still is funny. Sometimes it seems almost mnormal, and other times very little taste.

The Doc will see me in October to plan the second surgery - a check for disease and reconstructive - since I have a temporary incus( I think).
The operation will be in December or January.

So over all - all looking pretty fine.
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helgaursula
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« Reply #5 on: September 17, 2011, 11:27:35 PM »

For Royt777 - It would help me to know, how you managed to get about half of your costs refunded.  I just had surgery done last week and I found out from Medicare Melbourne Australia, that I only get about one third back.  I believe there might be a mistake on the invoice, because they disallowed one item (because it was two procedures at the same time).  As I also need a second surgery, I am very interested in this topic.  helgaursula P.S.  The surgery went well.
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Royt777
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« Reply #6 on: September 18, 2011, 06:46:06 AM »

Did you have private Insurance? I did. Of course it is really disappointing that even with Private Health Insurance which costs $'000s per year, we still have a sizable gap! :'(
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Royt777
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« Reply #7 on: May 03, 2012, 04:57:07 AM »

Well. It's been 15 months since my 1st Op, and I'm gearing up for the 2nd - this is to check for regrowth and if OK then to do a reconstruction of the inner ear. I have had great hearing over this time despite only having a temporary prothesis inside. The next Op is late June 2012. I want to travel overseas but the Doc says no flying for 6 weeks so I'll have a little holiday before the Op.
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J
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« Reply #8 on: May 12, 2012, 07:48:15 AM »

Hi! Much interesting, especially as we are all in Australia...very useful to read about your post-op experiences!

Also interesting point you are making with the costs. I will be admitted as a public patient. I was considering choosing private, but then I got the letter regarding surgery so quick, that I stuck to public. It took 7 weeks from my very first appointment to my GP where I got the referral to ENT, to when I will have my surgery. And I won't be paying a cent for either surgery or follow-ups, as that will be covered by medicare. Of course I payed for my first and follow up specialist appointments, but the rest has gone and will go straight to medicare.

J
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chamaka
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« Reply #9 on: May 13, 2012, 07:06:09 AM »

Hi guys
i recently got my right ear operated in mid November, the operation was successful and they were able to remove all of the disease.
They placed a gromet inside my ear to help(cant remember exactly for what purpose , all i know is that i no longer have to rely on popping my ears to hear whenever i go to lecture).
After a couple of check ups, recently in February they said my hearing had improved in my right ear, which is great news. Which i have noticed a little bit.
Just recently , in the last few weeks or so my hearing in the right ear has started to decrease and im seeing a growth in ear wax. Im not sure if its just the cold weather causing this or its a sign of cholesteatoma coming back.
should i contact the hospital and notify them? or wait till my next appointment which is on the 7th of June
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Royt777
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« Reply #10 on: June 27, 2012, 05:58:52 PM »

Well, I'm going back in today for the second op. This is medically called 2nd look Tympanomastoidectomy. That means the doc is going to have a second look to confirm there is no recurrence. If all ok he will reconstruct the Hammer/stirrup bones stuff with a proper prosthesis. Should be all ok. I have elected to stay in overnight since last time I was very sick. The outcome including improved hearing should be well known in about 3 weeks.  Grin
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Royt777
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« Reply #11 on: July 03, 2012, 07:23:29 PM »

I had the Operation. All went well. Doc says there was no recurrance of the disease (thank God), so he did a bit of a clean up and then inserted the final ossical bones/protheses and I was done. Still recuperating, taking it easy. I'm taking longer off work this time since there is less pressure at work.
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Royt777
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« Reply #12 on: February 10, 2014, 04:16:28 AM »

2014 Feb. It's now been while since the operation. All going well. I do get wax build up but otherwise everything is good.

The root cause for my problem is Eustachian Tube Dysfunction. Unfortunately this is still there. I read recently that there are some experiments to use a blow up balloon to expand this, so perhaps in a couple of years I will be able to have that done. Them I am hopeful my hearing will be crystal clear.
But I remain very grateful for the operation and the success my surgeon achieved so far. 
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Jess
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« Reply #13 on: April 03, 2014, 02:17:57 AM »

I had my surgery about 6 months ago. I was also taken by surprise by the size of my "$$ gap" despite being a private patient. I ended up out of pocket approximately 7k. The other thing that I wasn't fully prepared for was the aesthetic change to my head. My left ear is no longer visable in front on profile and I now have a large hole where my ear canal was (I had a modified radical mastoidectomy) and I can feel where large pieces of bone were removed from the back of my ear. This is not a complaint, just an observation. My hearing also hasn't improved and I'll see the ENT at the nine month mark to gauge my suitability for hearing reconstruction. In my previous appointments I hadn't been able to "pop" my ears, which indicated a lack of airflow behind my ear drum meaning reconstruction wasn't an option. I'm pretty hopeful though, since then I have noticed they are starting to pop again.   
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Bilateral
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« Reply #14 on: April 03, 2014, 07:31:23 PM »

Have you checked into the possibility of a bone anchored implant. It is much less invasive than reconstruction. Plus I don't think one has ever failed. You can research on-line at Oticon Medical. I have had one for 7 months and would be deaf without it, I am amazed how well it works.
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