5 year old with Congenital Cholesteatoma

[Guest guest]

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