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

Ears, nose and throat
1

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

2

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

3

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.

4

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. 

5

Hi Bethmariexx! I can't imagine what you are going through. I went through it myself but I was diagnosed with Cholesteatoma when I was a toddler. I remember as I gotten older, I had no care in the world. I was only fearful for the surgerys. I remember the time I had to go to surgery and I was laying on a table. I don't remember what age I was though. They put a breathing mask on me to make me fall asleep. They wanted me to count down from 10 to 1 but I was so scared I started to cry and thrash around. From then on, I would be cured from Cholesteatoma and then start having it back again. I remember my last surgery though. I remember I was put in for surgery for my ear. They gave me an option of either putting IV in before they knock me out or After. I chose after because I was afraid it would hurt. I remember laughing with my sister who was in the room with me and then I fell asleep. When I woke up, I had those ear muffs from after the surgery and my mom in the room with me. The nurse came in and took my IV out and then said we could leave that very night. I remember we were driving to Costco and we sat in the car. My mom asked me if I wanted to get something. I asked for Spy Kids 3 dvd. I think it might have been 2003 or 2004 when I was 9 or 10 years old. I wanted to go in but my mom said no. I begged and pleaded but she said no. I understand why now. I probably looked horrible after my surgery. 2 years later though, I was dignosed with a tumor in my gums. Thankfully, I only had to endure 1 surgury to get rid of the problem. It's been 11 years or so since I've had Cholesteatoma. I'm insanly grateful for my doctor. She saved my life. I remember one time before we found her, our current doctor back then recommended we go to Salt Lake City in Utah to seek out a doctor. We drove with family to Utah and when the doctor took a look at my ear hesaid he would do the surgery. But then came back to say to go to Boise, ID to seek a doctor there. We wasted so much time driving from Idaho to Utah only to be told to go back to see another doctor. It was frusterating. I can't believe there is a death rate. I'm glad I did not know that as a child. I'm glad your surgery was successful! smile

6

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

7

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

8

Hey

Wow seems like such a journey! I'm lucky to not have had a reaccurance but its only 5 months since surgery (nevertheless i'll think positively!) Is the tumour in your gums all sorted now? What caused that? 11 years since your surgery and are you feeling good?

Its so nice to be able to relate to people!

x

9

Hi Beth,

Thanks a lot for your encouragement. Hopefully i will healed too. I have been dying to be normal and act normal where I could sit or be in the middle of the.crowd or.group again. I have already wasted and lost a lot of opportunity because of the smell. I still can not understand why it still smells even though ENT's tell me it is dry. They dont believe me when i say it smells. I know it really is because my ex gf told me and my colleagues also act and. tell same thing. I get embarrassed when people laugh at me and dont sit beside me because of the smell. I wish I am a billionaire so I dnt need to work in the office anymore where i get embarassed and it makes me feel down morally and mentally. I pity my sit.ate because they too dont act normal when i am beside them because of the smell. I really hope my next surgery if need be will heal me and make me become normal and act normal without any pretentions.

Your story really uplift a lot of spirit and thank God you had successfully fought this painful disease.

10

Hey!

Im not great with the technical side of why youre ear is smelling but in regards to not feeling normal, I can certainly relate. When diagnosed I felt like i'd been put in a caterogy like 'ill' and I hated being labelled as having an issue.I felt abnormal and people in the year belows would whisper 'shes the one who has the tumour' and it was awful. I can't imagine the embarrasement you feel but I got something similar after my operation with people staring at me at school and everyone watched what they said around me and everything felt tense. Dont be down, like please. Im not religious but I do believe everything challenges us for a reason and nothing is temporary so keep thinkung positive as soon it will go. You're something special, like although cholesteatoma is awful it does make you different and although everyone wants to fit in I guess it'll benefit and make you stronger in some way. For I promise it'll be over soon. I know its probably feeling like you have a massive cloud over you but wahey it cant rain for ever. I know if I was you I would be self conscious too and how your colleagues are reacting mustnt be a confidence boost, but if you're constantly feel down then leave you dont need any negativity in your life like I view everything in the form of you only live once and having cholesteatoma made me realise how precious life was and how important it is to be happy. I'm not an adult, and I know changing jobs isnt easy but I hope as my life progresses I never loose this feeling I have that if somethings bad you leave. Im not saying run away from your problems but don't let them control you? Youre a fighter because you fought this disease and there is nothing you cant achieve. Dont doubt yourself or your strength and most importantly remember this wont last forver.

I admire your courage honestly and your honesty with me

Always here x

11

Hi BethMarie - What a wonderful attitude you have!  Thanks for being on here.  I have been putting my surgery off for a long while now due to being very scared - but it's scheduled for December 10th and it helps immensely readng your story and hearing that you can still smile, wink and most importantly think.  I have a genetic issue on top of c-toma which caused my mom after surgery to go from fully functional to not able to do anything similar to a brain injury so that weighs on me just in relation to surgery itself, as the same could happen to me. (My mom didn't have c-toma - it was a different type of surgery for her - just lucky me) :-)

Are you in the US? Did you have pain after your surgery - and if so what helped? Or any other symptoms?  I just want to get a good picture of what recovery will be like - assuming that I don't have other complications - which I can only keep hoping.  I know mine is on the tegmen/dura (brain covering) and also the facial nerve. The doctor said he will also have to "sacrifice" the taste nerve - so I've been trying to eat all of my favorite foods in these last days of taste. Did that happen to you?  I'm so scared. I feel like my life could be over after this.

Thanks again for helping others on here.  It truly does and you're making a difference. If I get through mine in one piece, I vow to do the same.

Take care...

J...

12

Hey J

I would start by saying 'im sorry you have to go through this' but I'm sure you've heard this numerous times. Seeing what your mums gone through has inevitably made you so worried and thats completely understandle. Although our diagnosis is the same category as you can see all are very different, however I guess the fear of how long you will still be 'normal' affects us all. But i've realised it inspires you to live your life to the fullest and you just adapt.

I live in england so i guess ine advantage you have is that everything is ever so slightly more developed where you are, my surgeon was amazing yet due to the low statistics of people who have Cholesteatoma, she was still considered 'inexperienced.'

I vowed when to do this to make sure i'm completely honest so I guess i will be...the pain after the surgery wasnt great. But it was bearable. When I woke up i felt high, morphine is amazing! However i remember the few days following that I felt awful, I wasnt able to move eat talk etc everything felt so sore and stiff but the thing I kept telling myself was that it was only temporary. I had the first 2 days where I felt bitter and worthless, I didnt feel human as I couldnt do anything but although it was painful it was more frustrating. I would say the biggest obstacle was staying motivated not the pain. Just please dont see this all as very final as although it is petrifying it will all be okay and even it seems niave just keep telling yourself that.

 I try to refrain from trying to be technical as honestly what would i know about the ear besides mine was messed up?! I know my cholesteatoma was very close to my facial nerve and the surgeon was very worried but I also realised that surgeons wont do anything that will harm you intentionally, like it may happen but in surgery if they know it is likely to happen theyre not likely to go ahead with it, I guess in relation to your mum that comment doesnt seem relatble however it is true for i'm still close with my surgeon. 

I couldnt taste for a few weeks so i just took advantage of that and ate fruit and that! But its back now thank god! It wasnt as bad as it seems for it doesnt go completely the taste just isnt as evident. The only way I can think to describe it is the taste when you lick a coin (weird ik). 

Recovery right now is bliss, I have GCSES and stuff but simple things remind me of how far i've come, my ear twitches a bit sometimes when i'm tired as naturally my nerves went through alot but its made me a better person and regardless of the outcome you develop from this. Im 15 years old and i love life, troubles with boys and exams etc doesnt affect me as much as I know the true values of life so its made me a happier person all round, and I know you can do this too. Physical obstacles dont create mental ones you can keep a part of you as you regardless just stay strong.

Youre scared? well ofc you are this is a big thing ofc it is! But you're life wont be over, I said to myself 'if half my face doesnt move thats it i wont come out the house' but for those few days when it didnt move i didnt care as i knew i could overcome this and i did and i know the doctors weren't sure if it would move again. But alot of it is in the mind. You will adapt to what comes your way and although its awful and god knows how bitter i felt but nevertheless at some point you're going to have to deal with it so stay strong

It may make changes but you'll be able to get through them

I dont know if what im typing is a load of rubbish but this is how I feel as I do really want to help as ive been there and although it was understandable, I wish I hadnt worried so much or spent nights crying and days feeling sick with fear for it was okay, it was manageable

Hopefully youll reply to me before the 10th but if not: all the best J I really mean that from the bottom of my heart

Beth x

13

Thank you so much, Beth for your extremely thoughtful and detailed reply. As I sit here crying and sick with fear your honest letter touched my heart. You are incredibly wise and insightful at the tender age of 15. I hope that after my surgery I will also wish I hadn't had to spend so much time fretting about it.

Thank you for being honest about what you experienced. Every single part helps. I'm glad you got your taste back and took advantage of the time without it. The pain subsided, the face movement returned and you remained positive throughout.

I appreciate what you said about physical obstacles not creating mental ones. That is how I normally live my life and I do believe that as long as my mind stays strong and clear I will be able to overcome anything. If I were to have a similar outcome as my mum my mind won't have that opportunity, so I can only stay positive and strong in my belief that my mind will prevail so that it can help whatever further physical obstacles arise. I will definitely keep in touch and hope you do the same. You have helped me immensely.

J...

14

Yes thankfully!! I only had one surgery and after it was gone. I don't know, I just know I remember going to surgery to get it removed. I'm feeling great. I do hate that I have to clean my ears out every 6 months. I have a small tube in my right ear because apparently the Cholesteatoma ate my ear tube so I had to get a small one placed in my ear. Anyways, ear wax builds up and I'm not allowed to use Q-tips because it will make it worse. But I'm grateful I don't have to use a hearing Aid. 

15

Hey J

I've private messaged you with all my details as I hardly check this. My brother told me before I signed up that most of the posts would be negative as if everythings fine people would just be getting on with their life and I guess thats true but I'm still adamant to try and help

Oh J hearing that youre upset it so upsetting but I remember being in that position too and its awful but there is really no way to get out of it.

This is a barbaric disease and the outcomes can be devestating, the fear you must be going through i'm trying to imagine especially because of how your mum is and I know I just know you're going to be fine I have every faith in you and it may seem immature to say that but I have a gut feeling as I really want you to be fine. Your mind is so powerful that Im sure it can overcome this and with the positivity you hold it looks like its going to be a big challenge to take away anything from you. Hold onto your drive and keep your head up right until the date.

Dont count down to it, I know right now when you see the date on your phone its killing you and you just want time to freeze (ive been there) but it wont, but thats not a bad thing, soon itll all be over and what will be will be

I know youve got this J just try and enjoy these next few days

Beth x

16

I have been looking for discussion on cholesteatoma. I had my first diagnose Sept 1983. The c-toma was so large invaded into my skull, my surgery was 15 hours long, my surgeon had to go through the back of my ear and remove my entire ear canal and portion of my skull to remove the c-toma. They had to take fat from my stomach to fill the whole back up. I recovered well and was told it should not return.

In October 2005 i started having headaches and black outs, went in for an MRI for my GP to tell me the monster is back and tripled in size my surgeon went in the same way. Surgery this time 10 hrs had some serious bleeding during surgery. I was told by my doctor he clean the area good and packed it back in from the fat from my stomach and it should not come back.

Here i am in 2015 i been feeling dizzy and bad headaches, went the doctor told him how im feeling. I been worried because i was diagnosed with stage 2 breast cancer in 2013 and SLE Lupus in 2014 i wasn't sure if cancer is returning or a bad lupus flare. Well we schedule an MRI and i got my results November 24 to tell me the cholesteatoma is back. I am so scared.

I keep asking myself can i just live with this and not have it removed. Keep wondering if i am going to be lucky again.

Thank God every day for what He has done in my life.

Reading all the posts have really hepled me.

Thanks

17

I have been looking for discussion on cholesteatoma. I had my first diagnose Sept 1983. The c-toma was so large invaded into my skull, my surgery was 15 hours long, my surgeon had to go through the back of my ear and remove my entire ear canal and portion of my skull to remove the c-toma. They had to take fat from my stomach to fill the whole back up. I recovered well and was told it should not return.

In October 2005 i started having headaches and black outs, went in for an MRI for my GP to tell me the monster is back and tripled in size my surgeon went in the same way. Surgery this time 10 hrs had some serious bleeding during surgery. I was told by my doctor he clean the area good and packed it back in from the fat from my stomach and it should not come back.

Here i am in 2015 i been feeling dizzy and bad headaches, went the doctor told him how im feeling. I been worried because i was diagnosed with stage 2 breast cancer in 2013 and SLE Lupus in 2014 i wasn't sure if cancer is returning or a bad lupus flare. Well we schedule an MRI and i got my results November 24 to tell me the cholesteatoma is back. I am so scared.

I keep asking myself can i just live with this and not have it removed. Keep wondering if i am going to be lucky again.

Thank God every day for what He has done in my life.

Reading all the posts have really hepled me.

Thanks

18

Hi okay so I had my 1st surgrey at age 12 and I've had 8 more since I went to the mayo clinic after I was on a piccline for 1 year it are my muscles away, I went to the mayo clinic in Minnesota and they obliterated my ear and now I have a huge growth under my ear lobe spreading down my neck since I've had so many surgeries I'm at either letting the cholest get into my brain and kill me or 99.9% chance my face will become paralyzed....I'm now trying to save money to go see a new ent at usc in California I'm desperate for answers in from America and I live in Nevada anyone have any help?

19

Hi Jenna - I've been to USC and also to UCSD (both in southern California) and for cholesteatoma you may want to see Dr. Jeffrey Harris at UCSD.  The doctors at USC are very good - but Dr Harris is very experienced and specializes in cholesteatoma and USC is  more focused on acoustic neuromas and cochlear implants. If you want to know more please send me a private message and I will let you know how to contact his assistant who can get you in to see him without the usual long wait. It's also a very good hospital - rated A and the best in the area.   I'm confident he can help you with the least chance that you will be paralyzed or that it will get to your brain, but of course you need to get there soon.  I've been there and I understand as I was sure that would happen to me as well, but now I'm on the other side and I'm fine!  It sounds like you've been through a lot - and you need this taken care of once and for all.  I wish I knew of a specialist in Nevada - as I certainly understand how expensive it is to travel to see someone, but the closest I know of is Dr Harris in San Diego.  Best of luck to you - and let me know if you would like more information. Please keep us informed of your progress.   

20

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.