I have been diagnosed(?) with a cholesteatoma. Any advice for a first timer?
Posted , 6 users are following.
I just had sinus surgery for a deviated septum back in March. As the anesthesia was wearing off i vaguely remember the doctor telling me i had an abnormal amount of skin growth, the cholesteatoma behind my ear along my mastoid bone. As it became clearer knowing what this was my first thought was despite the fact I was out of it, I wanted to find out the phone number to the first doctor, (so called ENT who got his license out of a cereal box and practices on human subjects) i saw who was quick to dismiss my symptoms of a full feeling ear, blocked and give him a piece of my mind!!! There is also muffled hearing, A TON OF PAIN that only Tylenol 2 seems to be able to cure, especially at night, dizzy spells, and numbness on the right side of my face. I have had ear infections right up from the time i could walk, until now. They were/are always fierce and antibiotic resistant. I had to go on IV for the last go round. (This has been going on fora a year and 2 months now.)He saw this condition when he was going to put tubes in my ears to relieve the amount of pressure i had been having in my face and ears. I had also been told there was a bone spur that needed removal. My Dad told me the word, 'cholesteatoma'. I was shocked. We (The family doctor and i) are also very suspecting that i have mastoiditis because there is a never ending sea of ear infections that don't or WON'T clear up with antibiotics and they are all targeting the middle ear. There is also a tell tale lump behind the ear that is on my right side. It is next to the lower part of the bowl. It could be anything, but it's been there since the first sign of the mastoiditis with uncontrolable pain. When he (The surgeon) was about to do the ear tube surgery, after the first incision in my eardrum, that's when he spotted it. He decided to do an operative examination he called it. He told me he would have to send me to someone who specializes in middle ear surgery. Then the weird part, (AGAIN!!) happens. Upon viewing my CT Scan which at my local hospital found something behind the mastoid bone, he claimed there wasn't. Regarding the cholesteatoma my ear feels like it's wet all the time. Is he second guessing himself or am i getting roll balled? I know these things are difficult to spot and judge, but I also know CT scans aren't the same as going into the body and studying the actual place. My Dad and I both want a second opinion and we believe we are both doing the right thing because there is just too much pain going on for there to NOT be anything wrong. It's not a thing nobody wants or needs, but it would be an answer to all this rediculous amount of ear pain which has me going to distractions at some point because it is so frustrating, but it would lead to answers so i could get the help i need and to at last, finally feel better.
If anyone has any advice for a person who has just received their first (?)cholesteatoma diagnosis, any help would be extremely appreciated!
0 likes, 14 replies
karenskip martin18173
Posted
I had cholesteatoma surgery in 2013. I had a ct scan beforehand and was told my scutum bone was eroded. I think this 100% confirms the diagnosis. Also with a ct they can pre plan their surgery. I had infections that would not clear, face numbness, bleeding, all the typical signs. The ear pain was more annoying than excruciating I would say. Still painful but not where I actually cried out. I had fullness feeling and still do now. I can't seem to regulate the pressure feeling. I was told mine was in the canal and they said it was rare and they would probably be able to get away with just going through the canal but they were very wrong. (I think they told me that to make me less afraid).
I had my ear canal reconstructed, eardrum repair and my cholesteatoma had near enough hit my brain he told me. It was very extensive but they cannot tell until they get in there.
I wish you well.
martin18173 karenskip
Posted
I am also sorry to read you had such extensive ear surgery. I too feel the same way. With my Dad,he didn't tell me quite how they were going to do it and I believe the reason is he doesn't want me to panic.
That was like when my surgeon during my sinus surgery looked in there. He saw something and described it as resting on the mastoid bone area. I had no idea they can do all these surgeries, I knew of the ear drum repair but wow! You went through a lot! D=!!
I return your kind wishes on wishing me well for my health so I wish you good health as well.
nick23731 martin18173
Posted
martin18173 nick23731
Posted
Thank you for your support in this ordeal, it is appreciated. I will certainly consider it as i was always told before as a child not to get my ear wet. I am highly thinking after reading your post getting some custom ear plugs made for swimming. Thanks again. I have one appointment this coming week on a Friday and a follow up Monday for my sinuses.
shelley78406 martin18173
Posted
Sorry to hear whats going on. Last year I was diagnosed with a very large cholesteatoma which was found during a mastiodectomy operation. I had been in severe pain with my ear. The diagnosise for something severe going on was only found after an MRI scan. Although the cholesteatoma wasn`t recognised from this it did lead to an emergency operation as a far bit of the bone of my skull had been eroded. Once they found the cause (the cholesteatoma) the surgeons were relieved. I then waited 6months for the op to remove it. I was off work for the whole of this time, in pain, on continuous strong antibiotics as it was infected badly. I had alot of discharge from the ear. The hospital saw me in ENT every 2weeks until the operation. It was a difficult, major operation as the cholesteatoma was very extensive, running along my dura but the op was completely succesful & I am now 6 months down the line and still tired, but 100percent better than I was.
My advice to you is - dont let anyone fob you off. Get a second opinion. Ask for MRI scan. I had to have another 1 before the cholesteatoma op because this was what they worked from during the op.
I now have the occasional neuralgia pain but that is all. I was lucky that mine hadnt damaged any of my inner ear so no balance issues.
Make sure you see the top ENT consultant at your hospital. We were under the top 1 in Bath for the inital operation, then Bristol for the biggy.
It can all seem pretty scary initally but there is light at the end of the tunnel.
There are also some pretty scary stories out there but that doesnt need to be yours. It isnt mine. Just keep pushing to see the top consultant.
martin18173 shelley78406
Posted
I will look into that keen suggestion you gave me of an MRI and i am going to ask for a sedative as me and tight spaces do not mix but i am getting to the point where last night was the pain was so much i cried because the pain was just so bad. My supervisors at work knows of my condition and from what I gather mine is quite minor. I feel absoultely terrible you went through that.
but am looking forward to the same as getting my issues resolved as well. I'm also scheduled for my first auditory brainstem response test for the balance issues I am having. I often feel like I'm going on a cruise ship at times. Feeling of swaying up and down when there is no movement at all. I will be sure to see if we can get to the top consultant where we go. This seems to be a bit more of a serious issue than what my Dad let on. I don't think he wanted to scare me. I have also been off my
food from time to time and on occasion run a slight fever when the ears errupt in their full fury madness. Someone at work asked me how it feels and i said when the pain sky rockets 'like something shoving against my ear that wants out and can't get out or it feels wet and weird. When there is a dull ache, i certainly know its there.'
Thank you very much for your encouraging words Shelly78406 as it does seem a bit daunting and a bit scary but i will continue to look for answers as it can only get worse if not looked after.
terry3207 martin18173
Posted
Your story sounds very similar to mine.
Same thing of the full feeling in my ear for "years" but no one ever saw anything they just kept treating me with antibiotcs until I finally insisted on seeing the ENT after the pain started and would not leave. My ENT was going to put tubes in as well and when he pulled the skin back all the debris from the CToma came out.
He sent me to my Surgeon at University Hospital. I had my 1st surgery December 1st, 2015. I am doing much better but I will probably have to be seen every 6 months for life. My CToma was in there growing for so long that it had grown upwards toward my skull and started to grow into the skull and put me at risk for Menengitis. I would still be waiting to see the ENT if not for the dizziness, pain and crickets in my ear which started about 1 year and a half ago.
I went on a trip and took a plane and it was the worst pain I have ever felt. My ear would not pop because the CToma had grown to the ear drum and sucked it in.
I just thought I had another ear infection and when I got back I went to the Doc and got more antibiotics.
I can only describe the pain that I was experiencing as a brain freeze in the back of my head that would never go away with any kind of pain meds.
The crickets are still with me and I have accepted that they "may" be with me for life.
I'm told that they might still leave one day but as long as I do not have that pain anymore I'm good.
I just went in for my follow-up and my hearing is a slight bit worse than it was and I only have 20% movement in the ear. I don't feel dizzy but if I move too quickly I notice it a little. My Surgeon does not want to do anything about the hearing loss or the movement in the ear just yet. I have to go back to see him in October and we will go from there.
All I can tell you is that the surgery is nothing to feel scared about. It's over and done before you know it and I really didn't have a whole lot of pain (but the Docs gave me stuff for it) but even after a week I was able to take Tylenol as needed and it wasnt that bad. It's much less pain than what I was experiencing prior to the surgery.
The one thing I can tell you that helped me after surgery, (especially at night) was wearing a head band around my head. Sometimes your pillows/sheets/blankets get caught on your ear and pull it so the head band helped me with that.
If you have any questions/concerns, I would be happy to answer anything that I can for you. While each individual and circumstance is different with this condition, you are better to get it taken care of as quickly as possible.
The CT scan does show the Doc how to prepare for the surgery and how far and exactly where it has grown to.
I wish you all the best and DON'T be afraid...this is an Amazing group of people on here that will be here to help support you.
karenskip terry3207
Posted
I also wore a headband for a long time and kept a padded piece of gauze inside it. In fact I wore a bob hat too at first. I got a v pillow also which was a godsend. Good advice.
martin18173 terry3207
Posted
Thank you, yes also for my story i went for years undiagnosed. The ENT i saw for my sinuses today looked in my ear but didn't see anything in there. It just feels too weird and there is also a lot of pain going on. I am wondering it could be in another place bearing down on my ear. Did your ear feel wet at all during the time of your cholosteatoma? I do apologize for asking, i am curious because you mention my story sounds a lot like yours. I also have bad hearing loss on the one side of my ear, the right. The one with all the problems. I get the ringing too now along with the dizzy spells and on Friday i am scheduled for an ABR to assess my dizziness and what it is all about.
I can relate to the pain with meds and that sometimes it just doesn't go away. Mine though is more like jabbing than a brain freeze. To quote you though each person is different with types of pain. Did you also feel quite cruddy during the time when you had a cholesteatoma? There are days when i feel quite ill but don't look it. I also asked the ENT how thick my ear drum was today and he said fairly thick. He gave me a visual. I can outline it on here: ( ) about that thick. Thank you for the advice on the head band, i will for sure keep that in mind. I am terribly sorry for your hearing loss as i know what that is like and i swear as of recently my hearing has gotten quite worse. So your tinnitus is more of a cricket noise? Mine is a persistent ringing that does not stop and seems to cloud my whole head x.X Annoying this noise is isn't it?
Thank you again Terry for your amazing help and yes, i am finding you and everyone on here to be really excellent and understanding.
^
terry3207 karenskip
Posted
I like that Bob hat idea 😊
I will have to keep that in mind if I ever have to go thru this again.
I have been told that sometimes they grow back, but I had a GREAT Surgeon so hopefully that won't happen ; o )
I like those rice packs too...it was a Huge help for the pain that I had prior to the surgery and a little afterward too.
Its great being able to share with others on here and hopefully help to make their recovery a bit better.
Thanks for sharing 😊
terry3207 martin18173
Posted
I did have a wet feeling all the time in my ear and the draining had a bad odor to it too.
Along with the brain freezes in the back of my head I also had sharp pains that I would describe to my Doctors as a Thunderstorm that moved in and lightning strikes would pierce my ear and those were very painful. They would last for long periods at a time.
What helped me the most with those was a rice pack that I would heat in the microwave and hold over my ear. I had forgot about those, sorry.
The crickets are steady ringing but I call them crickets because...did you ever have your window opened on a warm summer night and hear that chirping outside? That's what it reminds me of but I guess they are really a Locus bug making that noise LOL
Anyway, them little buggers are still with me. I told my Doc that I'm just going to give them names ; o )
If they get too loud some nights I just put my ear buds in my ears n listen to some music.
Hang in there Martin, it will get better.
I sure hope they investigate it further because what you have described sounds so very familiar.
If you are not comfortable with the Doctors diagnosis I encourage you to seek a second opinion.
Everything you have described is worthy of getting all the necessary tests to find and locate the problem. It's a very rare condition but can be serious if it's not taken care of.
I believe we all know our own bodies and we know when something is just not normal so insist if you need to but definitely keep after it until they find and locate it.
I will keep you in my thoughts n Prayers and I will answer what ever questions I can to help you 😊
martin18173 terry3207
Posted
My Dad uses the rice bags a lot for his knees. He had double knee replacements. He too is getting quite concerned for my ears as he has never seen me in this much pain. He recalls that there were a lot of nasty ear infections and they were horrible to get rid of. (I was in the middle of typing a response to you but my windows 10, i hit the wrong button and it deleted my post. I swear Windows10 was invented to drive us madt) I too feel the wet and it is not a nice feeling. It feels like my eardrum is soupy or squishy almost. I do not get the discharge but i do have that very troubling CTScan and a lot of the symptoms my GP also says add up. We are working to get a second opinion as i agree with you whole heartly that sometimes we just know.
Ah yes, i have heard the crickets before in the summer. My ringing is not like a cricket, mine is just like hhhhhhhhnnnnnnnnnnnnn with the n getting longer and longer. It happens to the point where it goes right up into my head which just doesn't feel right. Even for ringing. I am right there with you on that. I am pushing to get it investigated. Too much adds up from what my GP said to what i learned on line from people who have had experience with it and to what i feel with it. Are there any other diagnostic tests out there that they are probably going to do? I also told my Dad of the unfortunate run in you've had with one of these things and he was relieved to hear you were able to get help. I tell my Dad everyone i speak with on line. It was his idea to join a group forum of people who have had cholesteatomas before. I would also like to know, if one has a cholesteatoma removal are hearing aids always a good idea after if not before? I have such trouble now with the hearing that it is strange i can feel it getting worse by the month. I will also keep you up to date on how the ABR goes (After my sedation has worn off of course, i am not a teen/child, i just have trouble coping with loud noises) I do hope you are having a great day
terry3207 martin18173
Posted
I am doing well today, Thank You for asking.
I hope you are having a better day. I feel so bad that this is taking so long for you to get the answers you deserve and need to hear.
Sometimes the process can take a little while.
After being treated for the ear infections for so long by my GP and then having to insist on going to see the ENT I had to follow procedures with the ENT before he found the CToma. They did ear testing at the ENT and discovered I had some "slight" hearing loss. I first had to take a round of Steroid meds to see if it would stop the pain. I could not handle the Steroids...they made me hallucinate towards the end of the pack. I had to call the ENT back and tell him the pain was not getting any better and on my second visit to see him he suggested the tubes in my ears...he decided to go in and do the tubes in the office and that is when he pulled the skin back and found it. Then I had to wait for them to set up the appointment with the Surgeon at the University Hospital in Cleveland. After going to see my Surgeon, he agreed with the ENT's diagnosis but when he heard of all of my issues with the dizziness and pain, he said he didn't usually order a CT scan but with my case he wanted one done so he could see what he was dealing with. He was very glad he did when he saw how it had grown up to my skull.
He told his assitants to set my surgery up for the first available Friday on his schedule at the Westlake University hospital. (My insurance company would only pay for the Westlake facility). My Surgeon had just started performing the surgerys at the Westlake facility a couple months prior to my seeing him on Fridays.
He normally only did surgeries at the main Hospital. (I am "very lucky" to have the Best Surgeon in this field) He teaches the surgeons this procedure world wide. His name is Dr. Cliff Megerian.
My surgery was postponed "3" times because of the insurance coverage issue. (He is a Very Busy Doctor) He finally made an exception to his schedule and went to the Westlake facility on a Tuesday so that he could get my surgery done. He was as concerned as I was. I am So Blessed to have him as my Surgeon. He made me feel so at ease and he was so Positive that he could get it all. His exact words to me were "Sometimes I can knock these things out of the park and get it all and that is what I am going to try to do with you". He did say that sometimes they miss a few skin cells and then it starts to grow back but he really gives me a thorough check-up when he sees me.
But anyway...just Hang in there...and Be Persistant with All of your Doctors. Keep insisting that it is not getting any better and you Need to have some answers.
As far as the hearing aids go...Sometimes the Surgery corrects all of the hearing. My Surgeon told me that he had restored my hearing and I believe he is still waiting to see if it improves as it has only been since December. I just went 2 weeks ago for my follow up hearing test and the hearing Doctor that did the test said that my Surgeon might want to discuss some hearing aids to help improve my hearing but my Surgeon did not want to do anything just yet. I told him I have 1 really good ear and it makes up for the minimal loss I feel I have in the other ear.
I read articles that they can replace a lot of the bones in your ear to improve your hearing so I believe that once they are able to get in there and do your surgery and know exactly what they are dealing with, they might be able to improve your hearing without you needing any hearing aids. So, don't jump the gun on the hearing aids just yet.
Hopefully that is some hopefull news for you ; o )
I am vey glad your Dad encouraged you to talk to us on line.
When I was going thru this it helped me enormously and that is why I try to pay it forward.
I will keep checking with you and sharing what I can to help you thru.
rachelle60721 martin18173
Posted
Matin18173
?i have just been diagnosed with ctoma, had my CT today. Go back to doctor on the 22nd. I am so nervous, don't know anything yet. Just wanted to talk to someone who is going through the same thing.