chronic ear fluid

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hey all. I am pleased to join this group. Best wishes to all who are healing through their ailments. Mine is very minor compared to some i know but i have been recently down played by an ENT. He didn't see any  ear fluid in my right ear which has been plaguing me for months on end. My GP saw it, and even the ENT's own audiologist saw it! I was left feeling embarrassed and furious. Is this normal to have a continuous swelling in the ear every morning since March when you get up? I don't think it is. I know fluid can be in the ear for some time, but he said my ear drums were fine. It's that weird squishy swimming pool feeling i get and the fact that my ear drum finally let the fluid out on its own but keeps coming back. This morning it has come back with a vengeance, and there has been some mild facial numbing.  It seems to be getting worse in filling up in there.  He didn't order (After sleuthing around the internet i found out about some of these tests) EcochG or ABR  or MRI or CT Scan to determine if there was ear fluid, because my eardrums are screwed from surgery with scarring. He claimed it was jaw issues and just walked away.  Nor did he offer to knock back the ear tissue which he claimed were SOOO thick to give any relief. Am i just imagining things or did i get brushed aside like i wasn't worth his time? My left ear is perfectly fine. Claimed my dizzy spells due to a previous ear infection in March were migranes. I knew someone who suffered terrible migranes and those weren't it.   I now have a lump behind my right ear where all the issues are, about the size of a blue berry, or as the GP nurse's said bigger. It is hard and won't move. It is not a pimple because it has been there since  July  20th and would've popped by now. You have to lift the ear bowl to feel it as it is just underneath there.  My hair dresser touched it as i warned her that it was there because sometimes she pokes me. I have no idea what to do now. Sorry to vent on here, i am just mad that there wasn't anything wrong when there was.  We're waiting on another ENT. Has anyone on here had thick eardrums and stlll have ear tubes placed in? Sorry to ask, just curious,

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  • Posted

    I would definately get another opinion.  If your ear is draining, you have an infection or your eustation tube is closed.  If your eardrum is messed up then its more than likely not going to straighten up.  You could have  what they call cholesteatoma which is an abnormal skin growth in the middle ear behind the eardrum and you will continue to have constant trouble.  I have an ear disease and have had all of your symptoms.  You say that you are having facial numbness and that points to infection on the facial nerve that is within your ear.  You will have to go to a NEUROTOLOGIST.  I dont know where you live but they are very hard to find.  The normal ENTs dont know how to deal with these kinds of conditions.  I go to Dr. George Wanna at Vanderbilt in the Bill Wilkerson Clinic in Nashville.  Definately get one of these drs.  If you live in a big city you should be able to find one.  Make sure that you ask them specifically for a neurotologist because they misrepresent their medical practices as I have found out around here.  This can be more serious than you think especially with the dizziness, numbness, lump, drainage and reoccurance.  Infection is able to eat away at the mastoid bone and everything else in there.  Does your drainage smell bad?  If it does then its infection.  If it is like water, then you have a more serious problem and it would be a csf leak.  I had a csf leak, which is cerebral fluid leaking out which my ENT didnt believe, he did a  mastoidectomy, took out too much bone and It all collapsed and I ended up having brain surgery and ear surgery.  You dont want this to happen so find a NEUROTOLOGIST.
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    • Posted

      Thank you for your reply. I am sorry to hear of your misforutne with your issues! sad The drainage is not smelly but i am going to an audiology clinic next thursday that can help make referals to see if they can help my GP find someone.  I was not too sure what to think was going on in there  any more but the  symptoms you posted with the cholesteatomah match up to mine. I will mention the possibility  of one when i am there.  I was ferociously dizzy to the point where i couldn't stand and my Dad thought i was a hypochondriac until he saw the fluid which was reddish/yellow on my pillow. The leakage happened a week ago..My doctor pulled me out of work at the height of the ear  infection while i was ill or i would have kept working and become a safety hazard. I also had ringing and couldn't hear hardly at all. I had also been on IV antibiotics but I'm more worried about the lump than anything.The other ear is perfectly fine. The lump causes me to feel very full in the ear as well.  I am in Canada but we will try our hardest to find somebody suitable. Just out of curiosity, how does a csf leak happen?
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    • Posted

      When a person has infections that are so bad that the eardrum perferates, Its all in the middle ear section.  Infection eats away at the mastoid bone which surrounds everything in your ear.  The mastoid is a honey cone type of bone and continuous off and on infections erode it.  I have had my eardrum reconstructed completely 3 times and have had 2 patches put on that never held.  I am 48 and in feb. I almost died from a csf leak.  My mastoid bone had been worked on 2 times and the second time it was worked on the dr took out too much cus he didnt get or read my prior file.  the mastoid bone caved in and created a 2 to 3" hole that my brain fell into.  If you do not have a smell in your drainage and its just like water than its likely the same thing but just a leak at this time that would need to be fixed.  I had all of the symptoms of a CSF leak.  Its rare for this to happen.  I looked it up and there had only been 20 people reported that this happened to since 2007. 
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    • Posted

      I have also had those lumps behind the ear and in my temple area.  I see you are in Canada.  thats gonna be agrivating just cus of their health system.  I know of several people who have come here from there.  If you have had chronic ear problems then you also could have an ear disease.  I have chronic middle ear disease and its autoimmune.  Here in the US, they only put out 10 Neurotologist a yr.  They dont teach ear diseases to ENTs anymore.  That is how I ended up with brain surgery along with a complete reconstructed bones, the stapes bones have been reconstructed also.  I had 2 stapes implants.  The stapes that is in there now was reconstructed out of the cartlidge on the outside of my ear. 

      Write down all of the symptoms that you are having and give that to your next dr.  and your neurologist.  Make sure you tell them in person along with your list because they usually dont even look at those papers that you fill out in the waiting room.  I found this out from my Neurotologist.  Look on line for a Neurotologist your self and call them to make sure thatis what they are and try to get your referral to one of them.  You will have better luck with this kind of dr.

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    • Posted

      go online in your area and find a Neurotologist.  Call them and make sure that is what they are.  When you get a referral, get referred to a NEUROTOLOGIST.  ENTs will keep trying to treat you for an infection.  There is a test they can do to tell whether its an infection or Cerebral leak.  its not a CT scan nor an MRI.  they take a sample and run it thru a test.
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    • Posted

      Thank you again or your reply. Yup, the Canadian Health Care system is just so slow it's worse than what my internet signal was this morning.  It usually winds up in a really big fight with the GP and the ENT just to get into see one of those specialists, the ENT and i know i already said this but he 'claimed' there was nothing wrong.  Today the symptoms seem to be worse than ever, feeling full, along with my lump, itchiness (that's a new one) and the numbness in my face. It doen't stop me from talking however, it just feels strange. I can pinch myself with the nails and not feel a thing. On my left side i certainly felt it. My left ear has no issues at all. To be honest i wouldn't actually mind someone else doing that to really verify that.   It feels like someone gave me a shot of novicane at the dentist. That's how the nurse at the GP office described it to me before i even said it.  My face on the right side doesn't droop, it just feels numb. From your point of view a neurologist certainly wouldn't hurt either. When i was describing the symptoms briefly  on the phone with the audiologist he actually politely interrupted me and said he wanted me to come in for a direct test to see what was going on in there because they can help make referals. I certainly don't want there to be something wrong, but if i don't find out it could be worse. The strangest thing is i can feel like something is in there when i swallow. i used to get chronic ear infections as a kid as well. I will make sure to write down all the symptoms that i have been having for hte visit thursday and for another time as well. Just out of curiosity how bad were your dizzy spells when you had them? Mine were so bad that i got asked at work if i had any idea which way i was going.  It is going to be a busy few days for me so i will post on Thursday or after on how everything went. Thanks again, i really appreciate your kindness and your suggestions.
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    • Posted

      I had a walker if that tells you anything.  I would even fall over with it.  Almost turned over a grocery cart full one time trying to stay up.  I didnt realize how bad it was until I couldnt walk to my neighbors house without falling off of the road.  I was used to touching walls.  Vertigo isnt like just being dizzy.  Its like a real bad drunk when the bed is spinning but its not.  I would also loose control of my eyes, they called that nystigma.  I have learned not to go into stores unless they have direct lighting instead of florescent.  A florescent bulb has a gas in it that goes back and forth real fast and the normal persons brain doesnt pick it up but mine does.  I cant actually see it moving back and forth but I fall to my right.  My left ear is the one that has been messed up.  I was told by a police man that if I ever get pulled over to tell them I cant pass their test.  I couldnt walk a straight line for nothing.  I no longer drive.  I worked as long as I could but had some episodes where I would have to have someone to come and pick me up.  The last time I drove, I bout hit a guard rail on the bypass.  I cannot drive now until I am free of seizures for 3 to 6 months, depending what state Im in.  Some of the require 1 full yr.  I have only had 2 bad times since feb. when I had my surgery , that full vertigo has happened.  Both episodes of that lasted for a week or two.  I had to have my walker in the shower with me also for a long time.  I had vertigo like this for around 2 1/2 yrs.  before I could get anyone to listen to me.  I went to 16 different drs. here and they found out that I was right about the csf leak while trying to prove me wrong.  I had this diagnosis with the csf leak since june of 2012.  My regular ENT which is world known, Dr. Jugo, is the one that diagnosed me with it in the first place but was too old to do my surgery so he sent me to what he thought was a neurotologist ENT.  But the guy was just an ENT and never listened to what my dr office said to them when he called for me.  I have had a very misserable past 3 yrs with this.
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    • Posted

      your dizziness must've been terrible D= t must be frustrating not being able to drive. I hope that clears for you soon.  About ten years ago i suffered a bout of vertigo where i could barely stand. It was pretty much how you described. When i had the ear infections it was like that falling feeling. Like you're going to go down but you can't or you lose control and just grab onto something. The odd part was ten years ago there was no ear infections or anything when i had the nasty vertigo. I also should correct myself with my current health that i meant to say on my right side i could not feel a thing on my right side i sure can on the left.  It almost feels like somebody is consistently pinching the nerve off in that area. From my  mouth to the ear. There is no dizziness this time and i do recall something that an ER nurse when i was taken in for a concussion in November asked me the strangest question 'have you ever been diagnosed with a cholosteatoma?'  same as what you suggested. At the time i was dismissive of the idea because i felt fine.  Other than the knock to the head.  I got bonked only mildly which sent me to my knees on the floor in the matter of a half an hour. She looked at my ears and saw the mass of scarring tissue. The reason for her question was because my reaction to just a simple tap was so severe. My Mom had said i was off my balance and close to throwing up. After what you've told me and what she said, is now starting to make me really think about it. There could very well be nothing wrong and perhaps it is just ear fluid, but if there is someting way more than that it is better i get through with it and get it taken care of.  I also ride horses and every time i wear a hellmet and i only ride quiet horses.  I think between the audiologist, my doctor and whoever helps me be it a neurologist or an ENT, hopefully your suggestion. We can all get through with this. I really appreciate talking to you about this because it really helps me feel better having someone listen to me about this. Thank you.
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  • Posted

    My neurologist , that I also have to go to now is treating me for Migraines which cause dizziness, blurred vision and eventually goes into a seizure, grand Maul.  I cant feel a migraine.  I also cannot go int florescent lighting without going into a seizure now which they also say is from a migraine.  Its confusing to me.  They say I have had both epileptic and nonepileptic seizures.  This all happened after the screwed up ear surgery. 

     

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    • Posted

      Hi, my situation has been described so well here. I'm sorry it's from others having problems though. I get fluid in my ear, for the past, maybe 2 or 3 years. It's since I had a small cyst removed from the front of my outer ear, where my "sideburns" are, if I can use that term for a female. I can "pop" it in this same area and the fluid drains. I went to a ENT about 3 years ago and he said there's no problem in my ear. I looked up my symptoms last night, though, because my right ear (with "no" problem) has been very itchy lately. So I itch it with my finger until it gets swollen and painful. The discharge is smelly. I have tinnitus. I don't usually get dizzy but I bump into things. I think I always have though. I saw an internist a month ago and he said there's was a pimple or something like it inside my ear. I will look for a neurologist in my area. They require a referral in Utah.

      Thanks!

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    • Posted

      sorry for your misfortune about the fluid and such. I hope you feel better and find relief soon.  The cyst removal sounded like it was painful.( I'm a huge phobic when it comes to medical procedures. They have to whack me up at the dentist or they don't get a cavity filled) I'm no ENT but from your description the fact that you say it's smelly could mean an ear infection. Are you suspecting a cholesteatomah as well? It is now been 3 months since my passenger, i shall call him 'Bob' has been here.  I'd most certainly get it checked out and mine is directly behind the ear, but my  issue is my ear drums are so thick no ear fluid nor infection can move out. One also has to let me move the ear bowl so that they can touch it if i let them poke it. Sometimes people ask me if they can and i say it's okay as long as they don't do it too hard.   I know the fact that i have something in there could be trouble, especially with the lump present.  I have never had an ear infection with a lump before behind my ear. Inside swells with gunk to the point where it feels like popping and last night was the worst pain in my inner ear with the burning. My Dad i think is starting to suspect another ear infection, he asked me if i was sea sick yet. I said not as bad as the last time, just off. You'll know it when i get bad.  I can relate to the itching. Some days i feel like a dog would and i want to take my back leg and just scratch it wildly. Have you had numbness in your face? I have had it but with no facial features sagging or anything. It feels like how my right face might feel at the dentist.All the way from the ear to the mouth. Funny how it never stops me from talking.  It's weird how every medical person has their own view on something, even though we know what is going wrong isn't it? The ENT i saw was so dismissive it was embarassing. My GP is especially annoyed with him.  My left ear feels perfectly fine. I haven't had an ear issue since 2008. The bronchitis this year as i described in my first post was what started the whole mess over again.  I think my Dad feels bad that tubes can't be placed.I am curious to know what the term internist means? If i am right does it mean someone who is a resident with the ENT?  I am going to mention a neurologist to the audiologist as well if indeed we do and i'm hoping not but there are some things out our control if we do find a cholesteatoma.  A really weird issue i have is sounds sometimes being so loud it hurts. Sorry for the rather long reply but i can relate to your issues as well.
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  • Posted

    Omg Martin, you have just described what has happened to me ref docs ents etc, I have exactly same issues as you, including the hard lump behind the ear, it's like a small boney lump.

    My ear fluid keeps reoccurring too, docs and nurses note bubbles behind my ear drum the right one ( the odd couple of times it has been slightly on the left too),retracted eardrum etc

    Mine has been going on 4 years, long story short it started one morning dizzy spells then vertigo then vomiting, weird fuzzy headache, jaw pain below ear only, Upper teeth ache slightly more so the gums, blurry vision, post nasal drip now... I've been back and forth to docs and dentists.. Been to 3 ents, 2 of them seen the fluid etc and prescribed various meds and sprays ( didn't work) the 3rd one exactly same as you and dismissed it as a jaw problem (tmj) dentist said I don't have tmj! I had an mri which they said showed " change on brain relating to a form of migraine ", follow up with my doc and she said they lost my scan and the letter didn't make sense coz migraines aren't diagnosed by mri, ( what was the "change " then) ..ct scan showed deviated septum, narrow nasal passages and inflamed turbinates,all these ear and balance issues and they still say migraines, I'm seeing a neurologist in the new year , which I believe will be a waste of time.

    I just seen another doc last week, and he said the fluid was back again in both ears, no other cold symptoms either by the way, slight ache over cheek bone and pressure behind my eyes, gave me antibiotics to be on safe side, he wants to see me again on the 19th Jan, he 100% believes this is an ear issue and I'm to see the neurologist and if they agree I'm seeing another ent.

    Hope you are OK

    Merry Christmas x

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