I found a group on Facebook comprised of others who are affected.
Advocate for your child.
Netti pot with saline solution
Having my first surgery to remove the disease
TMJ mouthguard. I developed TMJ from tube down throat after 1st 5 hr.surgery. The guard stops muscle tightening over ear/eases head pain, esp. when stressed!
Joining Facebook groups helped me to cope
After going through something as painful as a cholesteatoma, you can get through any pain
I am loved and the people in my life will be there for me
Waiting on 1 more operation to completely remove disease
being able to relax after surgery
My friends who help me laugh every day- help to distract from surgeries!
I developed a relationship with somebody that actually wants to learn what I'm experiencing and how to help
Work. Keeping my mind busy
Learning more about the condition
I have facial neuropathy following the operations and so I use a bone conducting hearing aid (its like a tiny ipod)
My mom who takes me to every appointment and surgery!
I'm still able to do what I want to do in life
Motrin for pain and swelling
Met Mijn nieuw dieet heeft mijn veranderd sinds de cholesteatoom operatie
Support from facebook pages of people with the same disease I have meant I could get information, support and advice from people who understand
Listening to music helps me
Function as normal as possible
Hearing aids seem to help some but still concerned that I waited too long not getting the help I needed.
Faith or religion
Faith or religion
I keep up to date and read about the disease
Belonging to a WhatsApp group to share experiences
Music and books always makes things better.