Ear Fear. Scared I have a tumour.

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My problem is in my left ear only, It stared in January with a whoosing sound that came from nowhere but was really loud and scary. Nurse said it was ETD and it would go and it did. I tmight be worth mentioning that I slept with ear plugs for about 30 years, I've stopped now. Fast forward to March and I woke up one moning, took out the ear plug and had a dry itchy ear so I scratched it, must have been a bit over zealous cos it felt like my nail hit something and it hurt for a few minutes. From that day I have had dullness, fullness, and crackly noises in my ear. I have huge anxiety about health matters and I am terrifed of being ill but I forced myself to go to my GP. I have been 5 times now. Esch timea I have been told that it's ETD and it will go. I have had nasal sparys and antibiotics etc. Lat week the pulsating came backand I finally got an ENT referal.I saw the consultant yesterday and had a hearing test.My good ear was fine and my bad ear was slighty down but she said she would describe my hearing as normal. She looked in my ears by putting a camera in my nose and said all looked ok. I explained that it's driving me mad and the pulsating noise is so loud and the more worried I get the louder it gets and so on. She said that I should try CBT for the pulsating and perscribed a steroid nasal spart for three months. I was ok with all this, sort of, but then the killer. She said that it may be a tumour, acoustic neuroma and that she would send an appt for an MRI scan. I heard nothing past the word tumour although I have spent the last 24 on the internet and it seems pretty certain that's what it is and I am terrified. I have all of the symptoms and at 49 I am the right age. I also heard last night that my Uncle has a brain tumour so that didn't help.

?Does anyone have any experience of this tumour and treatment?

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  • Posted

    I have many ea issues too. So strange. Get a thud  sensation if i sleep on the ear late

    y.  Tinnitus is so common and frustratiing. pulsitile tinnitus is weird as you feel it too. Like a motorboat. Make sure bp is good. Low salt diet. And keep calm.  Too bad its hard to keep so calm with it. I have seen many drs. Heard all kimds of theories. From tmj to blood pressure. Many say diet plays a role. Magnessium foot soaks at night are helpful. Etd takes a long time to resolve and tmj can cause it as well as allergies. Good luck im still trying to figure this all out. Ents are not  very helpful. Tinnitus organization has good info. I am the same age as you..i wonder if hormones play a role too. Im three years post menapause though. I tried acuounture as well. Had too many weird side effects for me. But definetly see a maxillary surgeon for tmj. Its very rarely ever a tumor.

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    • Posted

      I did also see a rheumatoid Doctor and had a full evaluation. They screen for auto immune disorders like sjogrens, lupus and a bunch of others. They are very thorough. They took 20 viles of blood from me. Now a couple of things i have to follow up. 
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    • Posted

      Hi Lisa, I'm still on the pill but have been for years so not sure about the hormone thing, but it means I get my blood pressure checked every 6 months and it's ok. I eat well and watch my weight. I am really prone to stress and anxiety and that probably doesn't help. All I can think of is that I have a tumour and can't stop reading about it. The noise is awful and my husband is so worried. No idea when I will get an appointment for the MRI.

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    • Posted

      I get a thump a few times when i sleep. Wakes me. I wish i knew how to sleep with this. Get dizzy from not enough sleep. My ent appt isnt for two weeks. Although no ent has helped me yet. I too am awaiting a sinus scan. 
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  • Posted

    First you should know that acoustic neuromas are not common at all.  I have practiced ENT for 40 years, and although I've had many patients with a history and audiometric findings that pointed to acoustic neuroma, I have yet to make a new diagnosis of acoustic neuroma.  I, of course, have seen multiple patients who have been treated for them.  Mine is probably an unusual experience for ENT docs.

    Your symptoms are not really suggestive of acoustic neuroma.  Usually there is some hearing loss (sensory, not conductive), tinnitus (constant noise), and perhaps dizziness or vertigo.  Other tumors can present as numbness in any area that the trigeminal nerve innervates, since it is fairly close to site where acoustic neuromas develop.  

    Small acoustic neuromas are usually not treated, but are instead followed with serial MRI's.  Many do not grow.  The ones that do can be treated with cyberknife radiation, a very precise, finely focused radiation beam that has a small chance of complications.

    A few other things to know:

    You can't examine an ear through the nose; you can merely look at the opening of the eustachian tube where it joins the nasopharynx.  Incidentally, nasal endoscopy is often done for financial motives (about $200-250 a pop).

    Nasal sprays are going to do exactly NOTHING for your ears.  A popular fantasy, mostly among GP's and NP's.

    Cognitive behavioral therapy for ear symptoms is a waste of time and money, in my opinion.

    If the noise you have is concurrent with your pulse, it is probably merely transmission of the pulsation of the internal carotid artery, which lies very close to the eustachian tube.  Weight gain (or less commonly, weight loss) can cause it.  If you have gained weight recently, lose it.  Pulsatile tinnitus is NOT a symptom of acoustic neuroma.

    Patients with acoustic neuromas have sensory (inner ear) type hearing loss.  You didn't mention whether yours is sensory or conductive, or a combination of the two.  What doesn't make sense is if it is conductive, you don't need an MRI.  If it is sensory, you didn't need the nasal endoscopy.  Something is rotten in Denmark.  You may need a second ENT opinion.

    Bottom line:  The odds are extremely high that you are losing sleep for no good reason other than something you read on the internet that has a very low probability of applying to you.  

     

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    • Posted

      Hi, thank you so mu H for your reply. I'm in the UK so the NHS covers the cost of all the tests and treatment. The weight thing is interesting, I have lost about 20lbs over the last 18 months just by sensible eating and a,couple of exercise classes a week. Neither my GP or ENT has clarified if the hearing loss is sensory or conductive but the word conductive has been mentioned. My GP makes me feel a nuisance and the ENT doctor has terrified me. I just want to be rid of this noise. Can you advise anything?

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    • Posted

      Tell me  what the noise sounds like and whether it is constant or intermittent. Unilateral or bilateral? 
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    • Posted

      Hi, left ear only hence the acoustic neuroma theory from the consultant. It happened only once in January and then after I had the problem in March my ear just felt full and my hearing dull. It's worse outside on a windy day. To sort of correct that I pop my ear by blowing down my nose which corrects it till I swallow. I wonder if that has now become a habit but it seems to work. The pulsate noise came back a couple of weeks ago which prompted another visit to my GP who suggest that the constant blowing down my nose quite strongly may have caused it. It was really loud and woke me up. It seems by swallowing a lot I can make it stop. It has been coming and going at various degrees of loudness for a couple of weeks now. The more I think about it the worse is gets. I sometimes get a crackling noise too. I have concluded that I will never get back to normal cos other than the suggested tumour there doesn't seem to be an answer.

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    • Posted

      One key question is whether you have a sensory hearing loss. If not, then you don't need an MRI, and you don't have an acoustic neuroma. Even if you have a unilateral sensory hearing loss, only a very small fraction of 1% of such patients have acoustic neuromas, 1 in 2000 at the most. They are not common.

      Not to be rude, but you still haven't told me what your tinnitus sounds like. If it comes and goes, it is not a sign of acoustic neuroma. If it is a pulsation, that is not a sign of acoustic neuroma.

      I need to know exactly what you're hearing test showed.

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    • Posted

      Hi, sorry I'm still reeling with the shock of being told I may have a tumour when I have been constantly told by my GP I have ETD. The tinitus is def pulsate and follows my heartbeat. When there is background noise I can pretty much ignore it but when it's quite it's right there. The only kind of hearing loss that has been mentioned is conductive and reading about that it seems right. The hearing test is more difficult because they didn't let me have a copy of the results. The ENT compared the good and bad ear and said there was a slight dip in the bad one but very little. I will try and get a copy but they aren't keen are giving those things away. The tinnitus is intermittent but getting more frequent but I wonder if that's cos I am thinking about it all the time. Also you mention 1 in 2000, the ENT said something about 1in 200 so I wonder if I do have sensory hearing loss? Again I will try to get some more information. Thanks again for replying.

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  • Posted

    As I said before, pulsatile tinnitus is not a symptom of acoustic neuroma.  Nor is conductive hearing loss.  

    In the U.S., patients have a right to a copy of their medical records.  For you not to have that right would have to make me wonder what they're afraid of.  If there should be transparency in any area of life, it's in health care.  I read on the 'net that you do have the right to a copy of your audiogram (hearig test), but you may need to display some determination in order to get it.

    One question I didn't ask is whether you had a cold when your ear symptoms began.  The most common cause of conductive hearing loss is fluid in the middle ear space, which normally contains air.  Did your ENT doc use a binocular microscope to examine your ears?  That is the gold standard of otoscopy.  There are several good, years old studies that show that GP's are VERY poor diagnosticians when it comes to ear problems, largely because they don't know how to use a binocular microscope to examine ears because they were never taught.  They are right in their diagnoses and treatment plans  in less than half of all cases!  I would NEVER give credence to anything a GP tells me about my ears, or anyone else's ears.  

    I cannot emphasize enough the value of the hearing test results in formulating a differential diagnosis for you.  Let me know if you get those results.  Until then all I can do is speculate.  But the chance of you having an acoustic neuroma, based on what you've told me, is no greater than my chance of having one.

    It would be silly for you to lose sleep over this....

     

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    • Posted

      Hi, thanks again for taking the time to reply. I'm a little calmer today so I will pop into my GP and ask if they have a copy of the hearing test. Also I will ring the consulatan's office and ask when I am likely to have an MRI. I'll get back to you if I can get a copy of the hearing test.

      I am starting to understand that the possibilty of a tumour is tiny.

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    • Posted

      Hi, I called into my GP yesterday and when they have a copy of the hearing test from the consultant they will send it to me. I also spoke to the consultant's secretary who was lovely and confirmed that the MRI is routine for my symptoms and they are following procedure and it will be 6-8 weeks till I get an appointment. Feeling much calmer, so again thank you. Thing is I have now researched pulsate tinnitus and cartoid artery and am more freaked out than ever. Everything thing points to heart attack or stroke. Who'd have thought dull hearing could cause so much anxiety?? I'm exhausted.

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    • Posted

      Just as a very small percentage of patients with unilateral hearing loss have acoustic neuromas, the incidence of serious vascular problems in patients with pulsatile tinnitus (especially when intermittent) is extremely low. Maybe you can text me a copy of the hearing test when you get it.
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    • Posted

      Hi, I saw my GP yesterday, they don't have the hearing test yet bur will have it on Thursday so I will get a copy then. He gave me something else to worry about and tells me the pulsating tinnitus is probably cause by hardening of the arteries or a different kind of tumour I think he said is called a gloumus (?) he also said neither of those will show on an MRI scan and that he was surprised the ENT didn't order one. Again I am terrified. Should I ring the consultant and ask for a CT scan? So sorry to trouble you but the pulsate noise is there much more now and I am so stressed. I went out with friends last night and the noise woke me at 4am, can alcohol make it worse?

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    • Posted

      Sorry some of that didn't make sense. I meant that the GP said he was surprised that a CT hadn't been ordered.

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    • Posted

      I was reading your comments to Maria. I have had ear problems for few months now. I saw my gp he put me on meds with 0 helping. At first my hearing was completely gone. Now I can hear but I have like a fullness and humming like sound. Had hearing test done and ENT said I show some hearing loss. It’s like It’s there leaves then comes back. At first he thought it was some sudden sensor .... I am scheduled for a mri to check for tumor. Sometimes at night when I swallow my ear makes a noise like something fluttering. One night I drive down a hill yawned and something like popped and everything got really loud in that ear. Then I got stressed and it came back. 
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    • Posted

      I have decided to limit my responses to these discussion boards.  It is very time-consuming (and usually frustrating) to determine what's going on The histories are seldom complete, and that is an important part of medicine, a face-to-face encounter that allows for questions and answers in a time-efficient way, which combined with a physical exam almost always leads to a diagnosis by an experienced ENT doc.  It just takes too much time on these discussion boards, and the discussions are often just a lot of back and forth that leads nowhere in terms of solving the problem.  The last straw for me was when the moderators censored (didn't even post) my last comments to Maria.  Hers is a typical example of a lot of back and forth that leads nowhere.  I'd suggest you consult with an experienced ENT doc or otologist.  Good luck.

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