Please help cholsemetoma

Posted , 6 users are following.

I have a cholsemetoma, and have been putting off surgery for 5 years as I'm petrified of hospitals and going under. The last few days I have been getting the worst dizziness and I'm really worried sad

0 likes, 6 replies

6 Replies

  • Posted

    I put mine off for 3 years before getting surgery. The recovery isn't pleasant but I strongly encourage anyone who needs the surgery to get it without delay! Make an appointment for consultation ASAP. Best of luck.

  • Posted

    It is absolutely imperative that you get surgery asap.

    Cholesteotoma will eat bone tissue, so the longer it's present, the more bone will erode. Your three hearing bones are the least of the problem as (OK, you cannot hear when you don't have them), but if it starts affecting your cochlea and semi circular ducts you're in for way more trouble. In some people it's created a hole in one of the semi circular ducts and their balance gets affected.

    It'll eat away the cranical bone between you ear and brain and then cholesteotoma gets into your brain, possibly causing meningitis. If you're getting dizzy, the cholesteotoma might have reach your semi circular ducts and erosion might have started there .... There is no way to tell, but it's serious as you've delayed it for 5 years. The problems you'll get from not removing the cholesteotoma are way worse than the surgery itself. People grab all your courage together and seek help to get it removed.

  • Posted

    I hope you have made your appointment or already been.  My son is back in GOSH on Thursday for more surgery due to Cholesteatoma.  He is now 15 and was 11 when diagnosed.  He has never been in lots of pain after so everyone is different.  I feel for you with your fears but you must do it.  He is not worrying at all, probably did for first one at 11.  All the best.
  • Posted

    Hi Joanne, firstly, you must have this operation, I had mine 6 weeks ago, I was also very worried, the surgeon will be very good and you will improve quickly, untreated and it can be dangerous, 

    you will be out home after one day, it's all fresh in my memory, so if I can help please don't hesitate to contact, but get this done and get on with your life again, untreated is not an option, 

    best regards

     chris

  • Posted

    Just had the surgery 3 days ago . It all went very well . There is some mild pain but nothing to crazy . Being nervous was natural and expected but I did some meditation and mindfulness training . ( if you knew me you would have never guessed I do this sort of thing but It was a game changer ) . Made all the difference in the world . Best to get it done now . Use me as your guide . I was anticipating some crazy post op nightmares and experienced the exact opposite nothing but super positive results . This isn't 1997 the procedure was great with modern medicine . What to expect a little tightness , fullness around the ear . Swollen to be expected but all in all go for it . Remember I went in thrusday and was home the same day 

    • Posted

      Indeed, you can go home the same day. You can walk and talk. Pain will differ per person. Everyone is afraid of surgery. Even though I had two surgeries in 6 months on my left ear, no one will have a clue unless I tell them. I had trouble peeing after both surgeries and I needed a catheter. Next morning I took everything out. It'll be ok. Keep your calm. Take it very relaxed at least the week after. If you have someone living with you who can help you, great, if you don't, you're in the same boat as I am. No problem as well. Just make sure you've got enough food in the house for a week.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.