Hi all

I know how much I was wondering myself about post op so I thought I'd share my experience.

My surgery finally happened after being postponed twice by the hospital due to some other emergency case. Anyhow, last Wednesday (5 days ago) was my turn. Surgery took 3 hours and they got rid of the c-toma and infected mastoid bone (modified radical mastoidechtomy). Two bones had eroded so they made me two new one's and put in. All c-toma was in my middle ear and stretching upwards, but none in my inner ear or around any of my nerves etc, so that was pretty good.

The first night (at hospital) I was in some pain and they gave me morphin which obviously did the trick! For the first night I also had to have two people with me going to the toilet because of dizziness. I then woke up at 6 am the day after and was alright to stand on my own legs. The doc came and removed the big bandage around my head and left me with the stitches which are covered with some bandage I guess and an ear full of packing.

Day 1, 2 and 3 I pretty much slept. General anastethic goes into your fat deposits in your body and are slowly released over the coming days after surgery, hence the tiredness. Sunday (day 4) I was up for a bit in the arvo and actually got dressed as well.

The pain isn't too bad. I had panadine forte (panadol with codeine) for the first few days but that was all. Not really any problems with dizziness either, but doc told me that would be worse when they remove the packing (can't wait for that one!! Feels like a blocked ear and all you want to do is slowly pull it out....)

Eating is a bit tricky both because of the infamous metallic taste (which in my case got better quite quick) but also because you can't chew as it will hurt. If you got surgery booked - count on eating yoghurt and soup for a week!

Overall just a bit stiff now. Some itchiness and a tiny bit numb. Glad it's over for now!

J

Highly recommend the Mayo Clinic in Jacksonville, Florida (4500 San Pablo Road, Jacksonville, Florida 32224).  They have doctors there that specialize in c'toma surgery.  Make your appointment on the phone through the appointment desk ( 904-953-2272). You will need to be seen by the ENT.   They take several insurance plans.  They also have a hotel attached to the Clinic/Hospital where you can stay (the Inn at the Mayo Clinic 904-992-9992) and one on the property near the clinic -a Marriott.  First class the whole way with awesome doctors. Worth the trip - even if its only for a second opinion. We went there for a second opinion and ended up selecting them to actually do the operation and follow-up care.  There are several other Mayo Clinics throughout the country not just in Florida --so, do your homework and get the right surgeon for the job!

Update 7 - Only 1 in 10,000 people get this. It is considered rare.  Our son is doing well, moving neck better each day.  The super glue where the Doc did the incision is healing well.  Swelling is 75 percent less. Remember, he had an aggressive c'toma that had done a lot of damage.  Many of you that are reading this will bounce back quicker and will have had a less invasive surgery!   Stay positive.  

Hi everyone!

I was diagnosed with a ctoma a little over a year ago.  I'm a teacher, and just couldn't take the time off from the classroom that I needed to recover.  I have been using antibiotic drops regularly, but I know I can't put this off anymore, so I have scheduled the surgery for next week.  In all honesty, I am completely freaking out.  I am 30 years old and have never had any kind of surgery or medical procedure before, so this whole thing has me coming completely unglued.  I am hoping that you guys can answer some of my questions:

1. Facial paralysis/palsy:  my biggest fear, by far.  What is the likelihood of this happening to me?  What are the odds?
2. Pain: how much can I expect to be in after the surgery?  I have a decent tolerance for pain, but again, I have never had any kind of surgical procedure, so I have nothing to compare it to.
3. Recovery:  what to expect, how to make this easier on me
4. Anything else you guys that have been through this think I should know

Thanks for any help/advice you can provide.  I'm so nervous! 

Hi Ash, My son just had a large c'toma removed, see Junior Tennis Player Discussion Board, he is 16.  I read your update.  I am worried about your ear that is bleeding and itching.   Have you had a CT scan done on that ear? My son's c'toma has been growing for years his doctor thinks.  No one ever did a CT scan before on him (until diagnosis)  and he has had trouble with his ear since he was two.  Can you get a CT scan ordered for your daughter? You are not alone. Sending prayers out to you and your family.

Well, I'm back. It's been nearly 3 years now since my last surgery. No signs of the c-toma coming back, not that I would be able to tell anyway with my ear closed over and internally fully removed. I still have issues with it, most nights I get headaches from sinus pain as I can feel fluid in there with no where to go.

I have 2 concerns now, this is why I jumped on line to have a read. First concern and the least of the 2, my good ear has been bleeding every so often. It gets itchy and uncomfortable. I don't know if a lot of this is in my head due to worrying about it. But the signs of blood aren't positive. Is there many here that have had severe cases in one ear to be followed later by a c-toma forming in the other ear?

2nd concern and the biggest one, is my 4 year old daughter is now showing signs of something seriously going on in her ears. Her hearing has dropped dramatically over the past few months and after seeing the local GP last week, he was unable to see an ear drum in one ear (no wax) and the other was completely blocked with wax. We're trying to find someone to see her but so far no one locally wishes to treat children. I'm very worried that she may be facing the same problems as I have. I wouldn't wish this upon anyone, I've been through a lot of pain, I still have trouble communicating and I would hate to see my little girl go through that too. It breaks my hear to think about it. Anyone else here had a c-toma then also their kids too?

I sent you a personal message. We have a great doctor in Jacksonville, Florida.

Hi, I live in Jacksonville, FL, and was diagnosed with a probable cholesteatoma in my left ear on July 11. The ENT saw a granular polyp in my left ear and said that, 9 times out of 10, a cholesteatoma is underneath the polyp. I haven't scheduled a CT scan yet. I'm very nervous about surgery and recovery. I do not have a history of ear infections or hearing loss, so this is a complete surprise. I'm glad I found this site. Can anyone recommend otologists in Jacksonville for a second opinion? I am seeing Dr. Green at Jacksonville Hearing Institute.

Karma,  Please don't lay awake at night worring about being a ticking time bomb.  Believe me, I've worried enough for all of us these posts. .  I have CT in both ears pretty extensively. A month ago I had my 1st surgery on the less invasive ear because of the pain I was having.  My doctor has reassured me the CT grows very slowly and that even if it does start to invade past the bone, they can take care of it.  My 1st surgery was in June and I have to wait till at least November  for the reconstructive surgery.  Then after The rt ear is healed next spring will be my first surgery in the left ear which seems like eternity, but hang in there, you're on the right track.

I had surgery 1 month ago where they removed 2 inner ear bones and only have the stapes bone left.  The ringing in my ear is driving me crazy!  I have NO hearing in the ear and will hopefully be a candidate for a hearing aide in about a month, but am curious if anyone else has the ringing and hissing?  Did yours subside, or did you have to wait for a hearing aide or reconstructive surgery?