Re: 5 year old with Congenital Cholesteatoma

[Guest guest]

Most of these questions you should really sit down with your doctor

to discuss.

1) You should get a definitive answer from your doctor on the

swimming. In my own case, and as someone who used to love swimming, I

have opted to no longer go swimming. The reason I chose to do this is

that water in the ear can lead to ear infections (especially if you

are prone), which can ultimately trigger a Cholesteatoma.

2) Not sure about the replacement of the Prosthesis, and I would be

interested in the response, since I have one. I have assumed the

answer is " not unless there is a problem with it " , but I will ask my

doctor the same question when I go for my surgery at the end of the

month.

3)If you're smart, you will schedule regular checkups with a neuro-

otologyst. In my opinion, the answer is yes, because if you don't,

and you're prone to this affliction, one could grow for a while, and

the removal process is more invasive than if you catch it sooner.

Again, just an opinion, get the real answer from your doctor please.

The rest of the questions are definitely doctor questions

I use Silicone earplugs when showering, and these are available from

most pharmacies.

>

> Hi

>

> I am actually about 1 hour into joining this group and sitting in

> patient waiting room while I type this. I just found out Jenna had

a

> congenital cholesteatoma (pheew!) and quite large and went into

her

> ear canal. She will have to have followup surgery in 6 months and

> have a titanium prosthesis. Her doctor is McElveen in Raleigh

> NC. Some questions for all of you...

>

> 1) after this first surgery, we were told she could swim this

summer -

> will she be able to still do so before the next surgery

> 2) will this prosthesis have to be replaced as she grows older

> 3) will this require lifelong monitoring

> 4)Does surgery have to be in 6 months?

> 5) should we get a hearing aid in the meantime. She goes to 1st

> grade, new students, classroom, etc. in September - should we do

> surgery before or after - if we get a choice

> 6)will this followup surgery to put in prosthesis also be a 6-8

week

> lay low type surgery?

> 7) more questions of its 'history' (read this as lon gstory and

> questionable previous doctors) later

>

>

>

> 8) re: eyepatches - no one can tell me where I can find a

waterproof

> ones

> 9) when they say no activity for 6-8 weeks what really does that

mean?

> what are some ideas you have to keep a 5 year old 'happy' and not

> depressed that she cannot run/play jump and be a 5 year old?

> 10) what other followup questions to ask the doctor

>

[Guest guest]

Hi Sally

Just a few responses to your questions

1) after this first surgery, we were told she could swim this summer -will she be able to still do so before the next surgery

If the ear is sealed up - meaning the eardrum and the canal wall are intact - the then swimming is viable. As an extra precaution you can always get some ear moulds made or you waterproof "ear putty" which can be kept in place with a headband.

2) will this prosthesis have to be replaced as she grows older

Quite possibly. The prosthesis needs exactly the right tension to work properly. The ear changes shape over time, moreso if i you are still growing, I should. think.So sometimes the they become loose and don't work as welll, and sometimes they can get knocked out of place. The prosthesis aren't really expected to last forever though for some people they work just fine for many years.

3) will this require lifelong monitoring

As a rule, yes. Once you have had ctoma there will always be the possibility of it returning. If there are no ongoing problems it should only require an ENT check up every year or so.

4)Does surgery have to be in 6 months?

You mean for the prosthetic reconstruction. 6 months to a year is just standard time but it's up to the doctor to evaluate.It's time enough to check that the ctoma hasn't returned and that the ear healed properly.

5) should we get a hearing aid in the meantime. She goes to 1st grade, new students, classroom, etc. in September - should we do surgery before or after - if we get a choice

I don't know but I think it's usual. Heairing can take a bit of getting used to and children may not be responive to wearing them. If it's only for a short time then it can be better to encourage her to maximize her good hearing. Sitting up at the front of the class, making sure that people face you when speaking etc. It's always better to get surgeries out of the way.

6)will this followup surgery to put in prosthesis also be a 6-8 week lay low type surgery?

The procedure for reconstruction isn't usually anything liike as severe as that removing the ctoma. The time thing is usually to do with healing and grafts which doesn't usually apply with reconstruction.

9) when they say no activity for 6-8 weeks what really does that mean?what are some ideas you have to keep a 5 year old 'happy' and not depressed that she cannot run/play jump and be a 5 year old?

It refers to heavy physical exertion or straining which could cause increased blood pressure to open healing wounds or recent grafts. It also includes flying where the change in barometric pressure could do the same. It really does't mean that you have stop a child from running around and playing. That would be diffiicult, wouldn't it? Children usually bounce back very quicklyy after these surgeries.

Phil

[Guest guest]

Sally, My niece (who I care for) is going to be 4 at the end of this month. She just had a large CONGENITAL C-toma removed on Dec. 10. We did stay overnight 1 night at the hospital. 2 of the hearing bones were removed. She was out of daycare for 12 days. It is nearly impossible to keep a young one restricted that much. You just have to keep reminding them that they shouldn't run, jump, climb, etc. Once she bumps her ear once she WILL think again about being so rambuncous. Also, being done in the winter helps---it is too cold and yucky outside. Now, for some of your other questions......because it is a CONGENITAL c-toma and NOT caused by damage to the eardrum. The likelyhood of a reoccurence is less than those of an adult who develops a c-toma. (This is per our 3 ENT's that are treating her). We have

not yet discussed swimming, but they have not said anything about bathing and showering etc. We have washed her hair since surgery without ear plugs. Make sure to ask your DR. about this. As far as school....contact the Special Education Dept. have a speech evaluation done. The hearing issues could have affected her speech, and allow her to receive speech therapy from the school. (IEP's can be very beneficial) Definitely talk to her teacher about her hearing and the surgeries. The teacher can make sure to sit her in the most advantagous location in the classroom. What might the need for a waterproof eyepatch before? I would contact an optomalogist or an optometrist who specializes in kids for where to get one. My niece also had to have her ear canal reconstructed as part of the surgery. She has been a real trooper. Please let me know if you have any other quesitions or concerns esp related to a young child going through this. Connie SAllyhackett <srhackett@...> wrote: Hi I am actually about 1 hour into joining this group and sitting in patient waiting room while I type this. I just found out Jenna had a congenital cholesteatoma (pheew!) and quite large and went into her ear canal. She will have to have followup surgery in 6 months and have a titanium prosthesis. Her

doctor is McElveen in Raleigh NC. Some questions for all of you...1) after this first surgery, we were told she could swim this summer -will she be able to still do so before the next surgery2) will this prosthesis have to be replaced as she grows older3) will this require lifelong monitoring4)Does surgery have to be in 6 months?5) should we get a hearing aid in the meantime. She goes to 1st grade, new students, classroom, etc. in September - should we do surgery before or after - if we get a choice6)will this followup surgery to put in prosthesis also be a 6-8 week lay low type surgery?7) more questions of its 'history' (read this as lon gstory and questionable previous doctors) later8) re: eyepatches - no one can tell me where I can find a waterproof ones9) when they say no activity for 6-8 weeks what really does that mean?what are some ideas you have to keep a 5 year old 'happy' and not

depressed that she cannot run/play jump and be a 5 year old?10) what other followup questions to ask the doctor

[Guest guest]

My son is 6 and in the first grade. His C-toma was also large and had grown into the ear canal. He had his surgery on Dec. 12. Within a week he was jumping on the bed and throwing football with his dad. Luckily his surgery fell in the Christmas holidays so he didn't have to go back to school until Jan. 3. However, he went back to school at full force. He has had no problems participating in PE or any other normal activities. Other than avoiding water and wind in his ear, you wouldn't know he had anything done. He is also scheduled for his prosthesis in 6-12 months. However, we were told no swimming until the next operation was complete and healed. My son didn't require a hearing aid because although he had lost his hearing in his left ear, his right ear is 100%. I would definitely try to get the surgery done before school starts. I am a teacher and it would probably be hard for her to catch up according to how long she

missed. After Carr's surgery I bought him board games and we also watched lots of movies, but he was pretty much back to normal after a week, just nothing really rough. One thing you probably will want to ask about is how much damage has actually been done, but they won't really know the full details until after the surgery. Don't be alarmed after the surgery about the incision, it looks really big and rough at first but within 3 or 4 weeks you can barely see it. I know this is probably really scary because I was terrified, but with the advances in the medical field today it is amazing what can be done. My thoughts and prayers. Athena Hubbertsallyhackett <srhackett@...> wrote: Hi I am actually about 1 hour into joining this group and sitting in patient waiting room while I type this. I just found out Jenna had a congenital cholesteatoma (pheew!) and quite large and went into her ear canal. She will have to have followup surgery in 6 months and have a titanium prosthesis. Her doctor is McElveen in Raleigh NC. Some questions for all of you...1) after this first surgery, we were told she could swim this summer -will she be able to still do so before the next surgery2) will this prosthesis have to be replaced as she grows older3) will this require lifelong monitoring4)Does surgery have to be in 6 months?5) should we get a hearing aid in the meantime. She goes to 1st grade,

new students, classroom, etc. in September - should we do surgery before or after - if we get a choice6)will this followup surgery to put in prosthesis also be a 6-8 week lay low type surgery?7) more questions of its 'history' (read this as lon gstory and questionable previous doctors) later8) re: eyepatches - no one can tell me where I can find a waterproof ones9) when they say no activity for 6-8 weeks what really does that mean?what are some ideas you have to keep a 5 year old 'happy' and not depressed that she cannot run/play jump and be a 5 year old?10) what other followup questions to ask the doctor

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