My first MRI this Saturday

[morrell]

Hello all,

I have been reading as a guest on here for a number of weeks and have now joined your community and am now ready to ask if there is anyone who has had a similar experience to myself with many years of ear problems.

I'm 69 years old and since the age of 8 have been under ENT with a perforated eardrum.  Then nearly 40 years ago I had an emergency mastoid operation on my left ear (this is a story on it's own, but suffice to say the doctors said I was imagining my symptoms).  The operation left me permanently giddy and progressively over the years my hearing in that ear has diminished to practically nothing.  About every 3 to 4 years I experience a fullness in my ear (I have 6 monthly outpatient appointments) and this fullness has always been alleviated by the removal of a hard plug of debris from the mastoid cavity and since my last clean out I have moved to a new area.  The system has changed in that I no longer see an ENT consultant, but a nurse who does the twice yearly cleaning procedure and about 18 months ago I started to experience fullness again, but she said there is no debris and I asked to see a Consultant to confirm this, but this was not possible and I have since been seen by two junior ENT doctors who both say there is no debris in the cavity.  On my last appointment I again asked to see a Consultant to confirm this as I'm still convinced I do have a plug of debris.  Even though there was a consultant in the next room who said he did not need to see me and his diagnosis from next door was that I was imagining the symptoms.  However, the junior doctor asked if I would agree to an MRI for AN as my symptoms of hearing loss and fullness and giddiness could fall into AN and so this Saturday I'm having the MRI.

I hope I have not bored you all with my tales of woe.

Keith

[arizonajack]

Welcome to the site. Lots of good people here who will be supportive.

Medical "professionals" can be real SOBs sometimes. You were right to push for a proper evalution and the MRI will determine if it's "all in your head" one way or the other. 

[Shirley48]

Hi Keith, Good luck with your MRI. Through the years I've had two different doctors tell me there was nothing wrong with me.  In 1994 I had a bunch of tests that showed nothing and the internist told me my next specialist should be a psychiatrist. Turned out I had Hodgkins lymphoma! Then, last spring before they found the AN, another doctor said I should just wait a bit and all my symptoms would go away on their own. So, I learned that nobody knows my body better than I do, and my advice is to persist in finding out what's causing your problems.

[Jim Scott]

Greetings, Morrell - and welcome to the ANA discussion forums. 

You've certainly had your share of medical issues to deal with.  I'm afraid the doctors dismissive attitude is all too common.  Apparently, when some doctors fail to understand a patients symptoms they are quick to dismiss them as psychosomatic, which is highly insulting and quite often wrong.  I trust your MRI will help determine the cause of your symptoms. Whether or not an acoustic neuroma is found, we'll be here to offer our support as you then take the next step.

Jim

[leapyrtwins]

You didn't bore me at all 

Welcome to the Forum and good luck with the MRI.

Keep us posted,

Jan

[morrell]

Thank you all for your kind comments and here is what happened yesterday at my MRI:

I had the needle thing inserted into my hand ready to receive the gadolinium dye and was told they would be doing the first part x-rays for a period of time without the gadolinium and then would inject the gadolinium for the second part.

Whilst they offered music for me to listen to, it was not my cup of tea and so I elected not to have any.  Whilst I knew there would be noise whilst the procedure took place, I did not realise it would be so deafeningly loud, but soon became accustomed to it.

After about 20 minutes I was slid out of the chamber and told everything was over and I would not be having the gadolinium injection.  I queried this saying I had read the gadolinium was the only way a very small neuroma could be detected.  To which I was told this is not so and only use the gadolinium if they could see a neuroma on the first x-rays and in my case no neuroma was detected.

They told me the MRI would be looked at again on Monday by another peson and whilst unlikely, if it was thought necessary I would need to go back and have an MRI with the gadolinium.

They gave me an appointment with the ENT team for the 26th November, which again does not mean seeing a Consultant for what I think the problem is.

[Jim Scott]

Morrell ~

A bit of an anti-climax to your MRI scanning session but perhaps the scan will not indicate an acoustic neuroma, after all.  You'll know soon enough.  Thanks for the update and please let us know how things go.

Jim

[It is what it is]

What a frustrating experience you are having.  Please keep us informed about your medical journey.  With caring,

Karen

[morrell]

I had my visit to ENT today and again was not seen by a Consultant.  When I eventually was seen by an SHO and asked "How was I"?  I said I thought you were going to tell me the result of my MRI, to which he replied there is no report in your notes and he would go and find the report.  In due course I was called back in and told the scan report said I was to be called back for a gadolinium dye MRI and unfortunately somehow that appointment was never made.  So I now await an appointment to come through, but with Christmas fast approaching it could well be January before I have it.

The discomfort has now got steadily worse in that when in a room with a number of people such as my family, when they are all talking the internal left side of my head sets up a very strong vibration and i feel really nauseous and I have to leave the room.

I'm still convinced I don't have AN and now wait to find out the result of the second MRI

[Jim Scott]

Hello again, Keith ~

I'm sorry to learn of your frustrating experience with the NHS.  Unfortunately, you don't have much control over the situation and so patience is called for.  The follow-up MRI should give the doctors a definite indication of whether or not you have an acoustic neuroma.  Should the MRI scan rule out an AN, I trust they'll be able to find the cause of your increasingly distressing symptoms.  Although the source of your symptoms remains obscure, we appreciate your taking the time to post an update.

Jim

[millie]

Morrell...just wanted to say that each one of us uses the best words he can find to describe what he/she is feeling, and the explanations are as unique as the symptoms....what I describe as "wonkiness" may not be another person's experience of wonkiness, but unless the person diagnosing me is me, they do not know what I am feeling.  If doctors had an's, and these conditions, they'd know what we mean.
Hopefully you will have some respite soon.
Hugs and prayers...Millie

[lrobie]

Keith,

I'm not a doctor, but what you are describing in your last post sounds like hyperacusis.  I believe I have this too (not officially diagnosed).  My AN ear is very sensitive to loud noises even with moderate hearing loss.   Thanksgiving was at my house this year.  Lots of laughing, talking loud and kids running around made my head feel like it was vibrating.  Sometimes I have to tell my 12 year old son to stop making loud noises as he's making my head vibrate.  Google it and see if it sounds like you might have this.

Lisa

[morrell]

Hi lrobie,

Thanks for linking my vibration symptoms to possible Hyperacusis and just like AN, it's a new research, read and digest route.  Before your information I was unable to even find anything about head vibration without tinnitus sound.

The wierd part for me, is I now get it when I'm speaking and so conversation with my dear wife is becoming difficult and I know she is worried sick, so just hate having to remind her to speak very quietly.  Yet I can watch the television and those speaking at normal to even quite loud causes no vibration at all.

Regards to everyone on here and sorry for being off topic.

[morrell]

I received my ENT appointment today for the 21st December and could not understand why I was having an appointment when I had not yet heard from the MRI dept.  So I contacted the ENT secretary who advised me the appointment was correct as my MRI scan is on Tuesday next week.  I double checked with the MRI appointments office and do indeed have an appointment.  So thank goodness I checked as I would have been castigated for not turning up for the MRI scan.

Will let you know how I get on as I'm now having vibrations in my head at very low volume voice levels and have had a tingling sensation in my lower lip for over four days now.

[It is what it is]

With your increased symptoms, it's a relief to hear the MRI is scheduled. 

Karen