cholesteatoma op & recovery

Ears, nose and throat
1

When my 14 year old son was diagnosed with cholesteatoma last year, I rushed home & searched the internet for information. I found a very good site that explained in more detail what I had been told by his consultant & this one giving people's experiences (perfectly understandably the majority weren't good - if you don't have any problems you don't tend to go looking for support). I was looking for information about what to expect after the op so I thought I would post this which I hope may be helpful to others in our situation.

As a brief background, when he was 4 the school nurse informed me he couldn't hear very well (terrible mother that I am, I hadn't noticed - his speech was a little delayed but nothing else out of the ordinary) Glue ear was diagnosed, one ear cleared itself & we waited for the other to do the same. During this time I only remember him having one ear infection & this caused the ear to bleed a little but cleared up with antibiotics. By the time he was 12 it was decided to try a grommet which had no effect & so last year he had a CT scan which revealed cholesteatoma. He had his operation - a radical mastoidectomy - on 17th March.

The operation took around 3 hours & the surgeon said the disease was extensive & in all probability, congenitive. One of his \"hearing bones\" had to be removed. Immediately after the op he was given anti-sickness drugs & painkillers & he slept for most of the day. Although he didn't ask for them, I made sure he was given regular painkillers & he left hospital after an overnight stay armed with antibiotics & copious amounts of co-codamol tablets.

Over the next few days he was never in any real pain, just a bit of an ache & the painkillers from the hospital & a top-up of nurofen before he went to bed (just in case) completely dealt with that. After 6 days he felt he didn't need them anymore. A week after the op we noticed a bit of blood-stained \"ooze\" coming from the dressing & called the hospital. The ENT doctor advised that this was normal & as long as it wasn't foul smelling & he was well in himself, was nothing to worry about (if you get this PLEASE, don't take my word for it - contact your hospital who will give advice on your particular situation)

Just over 2 weeks after his op, we have just seen the consultant & had the dressings removed. Everything seems to be healing well. He will need another op in 6 months time to make sure there is no more cholesteatoma & as there is now quite a cavity where the disease has been removed (& this is prone to infection), he is probably looking at filling it. He is also talking about reconstructing the bone which has been removed to hopefully improve his hearing. I can't say whether the op has affected what hearing he had in that ear because he says he can't remember what it was like before- honestly, memory of a goldfish! I guess his next hearing test will reveal that.

It is still very early days for my son & we don't yet know how this is going to pan out for him but so far, so good. He's not felt at all unwell so has been able to enjoy his fortnight off school & he's not a great fan of swimming so the worst thing for him is not being able to play football for another 4 weeks!

Like I said at the beginning, I hope this helps others who have just been diagnosed & my sympathy to those who have had a bad experience with this horrible disease

2

Hi

I am really interested to find out how your son has been since his operation.

I was told last week at a hospital appointment that my son had this condition and that he would need surgery. Was not expecting to hear something like this as I have never even heard of it before. I too looked it up on the internet and was left feeling awful. I presumed when the doctor told me that he needed surgery then that would be it, the end of it. But I have read so many horror stories that I haven't been able to even share with my husband. I am so devastated for my son.

Can you give me an update on how your son is doing. I would really like to find out. Your story gave me some hope about the actual operation itself and how well your son coped with it.

Thankyou for sharing this.

3

Thanks for posting, my mother is going to have a large cholesteatoma removed surgically tomorrow, and i've been worried sick. Like you said there's not much info about what to expect, just info telling you what it is.

Hope your son is recovering well.

4

hi, i am 24 now i had a cholesteatoma 3 times now. i first had it diagnosed at 14, then another at 19 and now one at 24, very unlucky. but however every op i have had has been well done. its absolutly nothing to worry about.

5

Hi

We are off to hosiptal today with my son (missing the England Match) they have done a CT scan a few weeks ago now and we are going for the results from what the consultant has said he thinks it may be a possiblity that my son has this. After having problems for the past 4 years and one operation where they said he had no problems with his ears but then he had ear infection after ear infection since. I am so nervous.

But I am glad that you son has so far receoving well, fingers crossed his hearing is not affected. As the last hearing test my son had he had lost some hearing in that ear.

Thanks for your sons experience

Sam

6

Hi I was diagnosed with cholesteatoma last week and the doctor said that I might have a surgery. The ent specialist will see me aug 8 but since then I have been nervous because I read that after surgery I can lose my hearing plus my face can be paralyzed. How is your son after surgery. Any changes on his facial and hearing? Please let me know,

7

How was your face.? Did you get facial paralyzed. Please let me know!

8

Hello my husband has dealt with choleteatoma in his right ear since he was a child. They finally got it all removed when he was 16. They had to construct a prosthetic hearing bone due to damage the choleteatoma caused. Through his many surgeries he retained about 40-50% hearing in his right ear and leads a very normal lifestyle. (He is very musically talented and loves A cappella singing and playing his guitar.) He has never dealt with facial paralysis after any surgery only extreme dizziness.

As is common, he  has recently developed choleteatoma in his left ear due to his improperly functioning eustacion tubes. So we will be looking at a surgery in about 6mo. Best wishes as you navigate the medical field!