I had a successful mastoid surgery, can I help anyone?

Posted , 11 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

In March I made a post on this talking of how fearful I was for I had been diagnosed with Cholesteatoma, reading over it brought back alot of memories of how scared I really was and how at the age of 14 I was left uneducated on my diagnosis dismissed as being merely a kid who was likely to not understand. Consequently I took it upon myself to reseach and find out what was happening to my body, finally finding this website. I had my surgery on June the 24th and I write this with a fully fuctioning face and many brilliant memories since the surgery. I wish to reach out to anyone who has been affected by Cholesteatoma as I couldn't be more grateful that my surgery was a success. I'm 15 years old yet what I went through made me grow up. Googling what Cholesteatoma was and seeinf 'death rate' come up as one of the suggested options I don't think I'd ever been so afraid in my life. I was diagnosed on January the 24th and 5 months later I had the surgery. Those 5 months were the worst months of my life as I had the word Cholesteatoma on my mind 24/7. Finding this website helped me immensely as I began to not feel quite so alone and I would love to give back. I may not have all the scientific information on the surgery but I'd love to share my experience in hope it can help people the way I myself was helped. 

Always here

Beth x

3 likes, 37 replies

Report

37 Replies

Next
  • Posted

    Dear bethmariexx, What a wonderfully sensible and mature young person you are!  You display more commonsense and kindness than I've seen in a long time.  The fact that you want to help others cope is inspiring.  You've chosen the best way to deal with this problem.

    When I was diagnosed with Cholesteatoma, I didn't have the courage to ask.  "Do you mean Cancer?"  I heard 'Cholestea' and 'Toma' and I translated that to 'Fatty Tumour' and thought my last days were due.

    I had 11 minutes to catch my bus home.  I raced into our local Club, ordered a Scotch and Coke, swallowed it as fast as I could and stalked off to the Bus Stop in a fighting mood.  [Obviously, I'm much older than 14!]

    We live on a Peninsula, and the local bus goes clockwise on one trip, anti-clockwise on the other.  I was lucky that I had the anti-clockwise and a good 25 mins to put my thoughts 'in order' before breaking the news to my Husband.

    I have a friend who's been battling Breast Cancer, and she is an inspiration.  "If my friend can cope, then so can I!  I'll fight this thing with all the serenity and grace that she does.  Oh yeah!"

    When I arrived home I was in full fighting mode.  Broke the news to my bewildered Husband, and sat down at the Computer to consult 'Dr Google'.

    That was something like 9 months ago.

    In the meantime, my GP consulted 3 ENT Surgeons, none of whom is prepared to take on an uninsured Pensioner Patient.  

    After 6 months of waiting [I'd been told I had to wait at least 12 months to even get onto a waiting list!] my GP then declared 'You need to know what we're dealing with, are you prepared to pay a 'Gap Fee' to get a consultation?'  I guess so was my reply.

    It's now close to a year and nothing has happened.  I'm 78 years old.

    So why should I spend my days fretting about something that's not likely to occur in MY lifetime.

    I've got other challenges to meet now, which are much more pressing.  A couple of Melanomas found during a check-up.

    Cholesteatoma ... Get Thee Behind Me Satan!

    [Weak laughter]

    God Bless You bethmariexx

    Court Jester

    Report
    • Posted

      hey

      I can honestly say I admire your spirit! I hope im just like you at your age! It must so aggravating having your surgery prolongued as you'll have to endure the crazy thoughts that youre undoubtably thinking! I thought juggling GCSES and a tumour was hard! Honestly I agree with you and your attitude to the situation as even I know Cholesteatoma is slow growing so if I were you I'd want to focus more on the now. I think you'll be able to relate to how much having something like this puts your life into perspective. I know I'm only 15 but I feel so much older because of it (do not fear Im still the typical teenager and am enjoying the immense parties). In a way its sort of a very weird nice slap in the face, a sort of reminder to be grateful of what you have. It helped me realise how amazing life is as I realised how much I took for granted from brushing my teeth to being able to wink. 

      I hope you're doing well I honestly do and its been lovely to read this as I don't know about you but it makes me feel less alone

      All the best 

      Beth x

      Report
  • Posted

    Dear bearmariexx,

    I had already two surgeries (latest walldown canal)  regarding cholesteatoma and they were successful, my right ear is already dry and no more discharge. The only problem that I had is it still smells. It is hard to explain because EENT's cant find anything that makes it smells as it is dry and clean. I can tell that my ear smells because most of the people near me always sneeze and they always close their nose and people beside only communicate using their eyes and sometimes I can see their reaction that i smell. You know people's reaction when they smell something in your ear. i had been researching for months what is the possibble cause of the smell and it p*sses me off because I can no longer get seated in big groups or cant seat in between people anymore and it affects my job which I already quit. 

    My ear smells specially when it is directly hit by air or in cool places (inside a room with cool AC). 

    I hope I can find eardrops or know the cause of the bad smell still.

    Report
    • Posted

      I had the same problem as a child, my mother counldn't figure it out. Unfortunatly my mother took me to an ear doctor and he confirmed I still had Cholesteatoma. I don't think it's the cause so don't freak out but the smell eventually went away. 
      Report
    • Posted

      Hey 

      God that must be so annoying! I used to have a disgustingly foul smell after my operation but it went when my ear dried up, Normally its due to infection I think but if the ENT havent found anything I wouldn't worry. Theres sooo many products now adays Im sure you can find ear drops very soon. I just googled it and apparently its normal to experience a smell  but I guess you're more worried about it being embarrasing! All I can say is that if it was me I'd just use perfume and keep my hair down agh sorry not much help!

      Let me know if you find anything!

      All the best x

      Report
    • Posted

      I signed up to this site just to reply to you. I had two surgeries, one at 10 years old, and one at 12 because they c-toma wasn't fully removed. After the second I still had a stinky discharge. My Dr. May he RIP, was the head of ENT and teacher for NYU, Colombia University, and Winthrop University in NY. He was the pioneer of cochlear implants and needless to say, a brilliant man. He was stumped about the discharge and smell considering that my surgeries were a success.  He contacted his mentor, and they came up with the solution. My ears stay moist due to a post nasal drip that I never knew I had. The answer to not having a smelly ear anymore, 70% rubbing alcohol and a tea spoon of boric acid mixed in the bottle. Both are extreme drying agents, and will combat the smell.  Every night I put three drops in my ear, place a small cotton ball in there and go to sleep. That keeps the smell contained all day. If you feel wary about using the boric acid, you can just use the alcohol. I'm 35 now, and unfortunately I still do it every night, but it's a part of me now. And that's ok. I still have my hearing so things can be worse. Hope this helped. 
      Report
    • Posted

      Hi rob thank you for your reply. How is the mixture of the solution you used? Is it a -50% alcohol and 50% boric acid.

      I guess i have the same problem as yours and i had been to a lot of eents already and they kunds tell me the same that there is nothing wrong. What i always complain is the smell especially when i am in cool rooms and people really smell it and always react by saying something and i know it is me and get embarrased always. My doctors said it is already normal for me to have that kind of smell because it is no longer that normal ear. I noticed even my doctors clean my ear it still smells especially when it is directly hit or exposed to open air or if i am in cool places.

      Hopefully your advice and solution put an end to my dark days and act as normal again where i can sit in the middle of a crowd or can stand and sit next to anybody without worrying any foul smell to my ear... i will definitely try this solution and hopefully it works as well for me...thanks a lot really.

      Report
    • Posted

      Use one teaspoon of boric acid in a full bottle of 70% isopropyl alcohol. Use three to five drops a night in your ear. Good luck. I hope it works for you too. I have to do it everyday, for the rest of my life, but it does beat that smell.
      Report
    • Posted

      Hi rob thanks to your response.

      Just curiousity though do you experience the same as mine where it smells especially when you are in places where it is cold and in open air places even though there is no infection, ear is dry and clean?

      Do you wash it after you wake up in the morning? Will it smell like alcohol? after?

      I remember putting a mixture of betadine and vinegar before but it doesnot work coz it smells like betadine afterwards.

      I have a job now and my job really requires me to sit down wiith clients and always get embarrassed because of the bad smell and in a way affects my confidence and morale.

      Report
    • Posted

      Yes same thing pretty much. The alcohol kills everything that smells in your inner ear. But you have to do it every night. I'm a teacher, so I know how you feel having a career. And I always found it worse when the air condition hit my ear. Same when you wear headphones or whatever. I've found the only thing that works is this solution. But you have to do it every night. Good luck. I hope this works for you as well, and it will help you gain your confidence back!
      Report
    • Posted

      Hi rob, thanks a lot for your advice imma try it and will do it religously as per your advice. Looking forward to have my confidence back and to act normally under any circumstance.

      I will let you know if it worked for me.

      i am hoping really this solution end all my lifelong struggle with this devil in me and i will do everything to end this devil's invasion of my beautiful life.

      I cant you enough for your help and advice.

      I feel a little bit rejuvenated right now knowing we have the same situation and the solution worked for you.

      Thanks really rob. Have a good day and continue helping people with similar problems. GodBless you always and your family.

      Report
    • Posted

      Thanks. It will work out. And if it doesn't, then just find solace in that there are plenty of people with the same problem, and there are people working on those problems. The vinegar solution that you spoke of never worked for me, this was the only one that worked.
      Report
    • Posted

      Hi rob just wanna ask coz i cant find any boric acid in my place and so far have only used alcohol and i am using a syringe to have it dropped in my ear and put it till it is really full until on the outside.

      i have it there for 10-15 minutes then have it out. Is that the way you do it and did it take long for the smell to go away coz for me i am still getging the same reactions from people and colleagues and i am feeling like i have poo all over me coz they dnt want to sit beside and they always cough and sneeze and close their nose everytime they sit beside me.

      Sorry to bother you with a lot of questions.

      Report
    • Posted

      No problems with questions. Boric acid can be bought at any home improvement store. I usually put 5 drops in my ear, place a cotton ball in the ear. And then go to sleep, leaving it all night. When I wake up I wipe my ear with a baby wipe. Also when you have the operation, you tend to get severe post nasal drip. If you have allergies or sinuses, it will stay trapped in the ear. You may not realize you have allergies, but with the growing state of pollution, and climate instability, the majority of us will get horrendous allergies and sinus infections. I would recommend taking a Claritin D, as well. Regular Claritin does not work, it has to have the decongestant. Try a week with putting the drops in at night, and going to sleep with a cotton ball. This is the only thing that works for me. Good luck!
      Report
    • Posted

      So it took like a week for you to notice that it is not smelly anymore and that you were able to sit and socialize with others again?

      Are you located in the US?

      Report
    • Posted

      Well I can't recall exactly how long it took. I've been doing it for over 15 years though. And if I miss a day or two, the smell comes back. If I recall it took a week or two to go back to not smelling. I am located in New York.
      Report
    • Posted

      Hi rob it is me again. Just wanna know what type of boric acid arw you using? I have tried to look for it but to no avail though i saw some online and i have different types one is hydrogen borate and the other is orthoboric acid and it comes in powder. i Am not giving up on this even thiugh again i have been embarrassed everyday in the office because of my smell but i am faithful this will end my misery.

      By the way i saw online that it can also be mixed using a vinegar and then mixed with water.

      Hope to hear from you again. Thanks in advance.

      Report
    • Posted

      Hi rob thanks for the link.

      I have made a mixture of 1 tablespoon of boric acid powder i bought from store which labeled for cockroach and other pest. I assume that is applicable as i have read it online to a 250 ml of 70% rubbing alcohol. I have let my siblings see my ear after a day found out that there are white particles settled inside my ear. I am using a syringe to put the mixture and let it in there for 10-15 minutes and making sure there are no small particles which means what i placed inside my ear is a mixture with no stains of any borric acid particles. Is that the case for u as well?

      So far i noticed it made my ear really dry though i still get same reactions from my peers but i dont quit as i have noticed significant change in the odor.

      They can laugh and talk about me everyday butthat wont make me stop from trying your solutiin until i get rid of the smell totally.

      Just really curious and bothered that some boric acid particles settled inside. Is it not dangerous?

      Thanks in advance for the advice rob. Hope you dont irritated by me asking lots of questions. I just really want to get rid of the bad smell and act normal again.

      Report
    • Posted

      No worries about the questions. That's the boric acid I use. I have never really noticed the white particles, but I've never had anyone look in my ear for them. They might be there. But boric acid is virtually non toxic to humans and pets, even though it kills roaches. I'm sure if you ingest the whole bottle it will poison you, but then again, if you take too much Advil it will poison you too.

      I feel that the 10-15 minutes might not be enough. I usually leave it in over night.

      Good luck!

      Report
    • Posted

      Hello christ2fear,

      I have exactly same problem like you.

      I have undergone an otitis media surgery ,my ear is dry now but the smell is still coming from my ear.i don't know what should i do. Iam 16year old and still studying in school and my friends notices the smell and close their nose i can't concrntrate on my study i refuse to go to school beacause of this smell i don't know what gonna happen next. Pls..god help me..😢

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums 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 forums 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.

newnav-down newnav-up