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Cholesteatoa

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genuineKim
(@genuinekim)
Active Member
Joined: 2 years ago
Posts: 6
Topic starter  

Hello everyone,

I did a quick search on the forums and did not find any posts on or about cholesteatoma. I know it is on the rare side but the symptoms after can be simular to many of the others on here. Dizziness, Vertigo, Migranes and many others. 

I thought I would reach out and see if there were anyother Ctoma people here 🙂

This topic was modified 2 years ago by Ms. Cynthia Ryan MBA

   
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Renee
(@rbward88gmail-com)
New Member
Joined: 2 years ago
Posts: 3
 

Hello.   I’m actually on here due to my Covid induced vestibular neuritis.  But my daughter had a cholesteatoma as a teenager 5 years ago (when it was finally discovered)  My battle to get her appropriate medical care was a tough one. I’m sorry you’re in that spot now too.  She had the dizziness vertigo and migraines.  Such a struggle to get anyone to believe they were present and that the surgery made them worse,  in the short term at least.  

This post was modified 2 years ago by Renee

   
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Scooter
(@satcoop3903)
Active Member
Joined: 2 years ago
Posts: 15
 

oh yeah I had it 35 yrs ago and its back it sucks


   
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Runner
(@sarahryan)
New Member
Joined: 12 months ago
Posts: 2
 

I hope you can spare a minute to read my son’s story and support as much as you can.

My son was diagnosed with Cholesteatoma in April 21. He had mastoid surgery in Oct 21. Due to its severity, his hearing bones were removed as it had eaten into them and the mastoid bone surrounding his ear. He is now permanently deaf in one ear. He will at some stage require a further operation to check that the cholesteatoma has all gone. Not many people even know what cholesteatoma is. It is often misdiagnosed as an ear infection.

The only way to treat cholesteatoma is through surgery, and there are very few surgeons that specialise in this area. The sheer size of the cyst can impact the nerves in your face, leading to facial weakness, paralysis, brain abscesses, and meningitis.

I have created a UK Government and Parliament petition which has been approved.

The petition I have created is to ask the Government the following:

Review and fund improvements in diagnosis and treatment of cholesteatoma

The Government should:

- Review how cholesteatoma is diagnosed and treated on the NHS

- Increase funding to help improve treatment

- Run a campaign to raise public awareness of the condition

A petition such as this has never been created before and has never gone to Government. I want to ensure it does and therefore, below is a link to the petition.

https://petition.parliament.uk/petitions/599266

I would be so grateful if you would sign the petition and also share the link with your friends, family and colleagues as much as you can so it goes far and wide!

At 10,000 signatures, government will respond to this petition

At 100,000 signatures, this petition will be considered for debate in Parliament

This isn’t so much about my son. This is about creating an awareness of the disease and the affect it can have on peoples lives. I have read so many stories of what children and parents are going through, so the more signatures we can get the more people we can help who have this horrible disease.

Thank you everyone 🙏


   
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