Advice needed

[butterflyhugzs]

Hello,
I hope you don’t mind me posting here, I just need to talk to someone.
My problem is that I have been unwell for quite a few years with fibromyalgia.
The Dr’s seem to think everything is fibromyalgia and don’t really take me serious so I don’t bother going unless I get really bad.
Recently I went back to the Dr’s as my tinnitus is getting much worse and seems to be affecting my hearing in one ear and the tinnitus has got louder in one ear.
I had a hearing test and they said that I will need a MRI scan as I also get dizzy and occasionally vertigo. But the waiting list is approx 6 months in my area in the UK.
Anyway I looked on the internet (not always a good idea) and put into google tinnitus worse in one ear.
The word acoustic neuroma kept coming up so I investigated some more.
I thought all the symptoms I was getting were due to my fibromyalgia but now I am not so sure, but I have had SOME of the symptoms for a long time, about 18 years
I did have facial pain as one of my first symptoms 18 years ago and had an MRI scan then. But recently my symptoms have got a lot worse.
The tinnitus in really loud in one ear, I get lots of headaches and migraines and often wake with a headache which can last for days going from headache back to migraine.
The hearing loss in one ear is quite recent, I always feel dizzy or light headed but I have had to learn to live with constant drunk unbalanced feeling.
The facial pain I have everyday and have been told its atypical facial pain and TMJ and to live with it.
The new thing that has happened is that I have a feeling like I have had ear drops put in my ear that are running out and my ear goes all cold, but no liquid comes out.
I am just concerned and have to wait a long time for MRI, can anyone relate to anything?
Would love some feedback.
Thank you.
 

[ppearl214]

Hi Butterfly... welcome!  You are no bother. I am also a sufferer of FMS (fibromyalgia syndrome) but I understand your concern.

the true/only way to determine if you have an AN is through the MRI. Now, I have had some dealings with the NHS in the UK (my beau lives in SW London/Herne Hill and have had to first hand experience A&E and NHS) but Tony, on this site, is from the UK, rather versed and may be a best supply of reference in dealing with the NHS to help get you an MRI sooner than later. I also know the British Acoustic Neuroma site is not as active as this one but may have some info there as well.  I have had some of my English friends weed their way through the NHS recently and have gotten into dr appts and tests much earlier than originally booked.  I'm not sure if you are currently working with an ENT (ears/nose/throat) dr or a neurosurgeon, but like you, many brushed off my situation due to my FMS... I was the persistant one and hoping that your persistance, a little guidance (from Tony?), etc, will get you the MRI sooner.

Before you start to worry, let's see if we can get you that MRI first. No need to worry until the test is done and unless it comes back showing an AN. There could be many reasons for your symptoms, but we are good ears here as well and a good start to gaining your diagnosis.... (we give huggles too!).

Hang in there....
Phyllis

[Windsong]

HI Butterfly,

I can relate to all you have said here.
I have fibro also . I was almost blown away when i heard one of my specialists tell me that he thought my symptoms  were due to fibro when it turned out to be from an An.  That was a shock as i never brought up fibro in any conversations with him except once to say i had been diagnosed with that. For me, it was a non issue as i had other health issues which demanded more of my attention. After years of doing what it sounds like you have been, that is learning to "live" with all the nuisance symptoms and "shutting" up about why have i lost my hearing? why am i dizzy, why why why , and getting no answers, I finally  got an appointment in another city with a new doc who "listened" and ordered the mri which found my acoustic neuroma. Imagine everyone's surpise when i went back to the docs who had been following me for years to say, hey look at this....it was particularly poignant as i had asked a number of times, "you are sure i don't have a brain tumour?"

I do hope that you do not have an acoustic neuroma.
I do wish you could get an mri sooner than six months though. Is there any way you can stress to your doc that your symptoms are bad enough to warrant faster action, if only for peace of mind?
For a number of people, their ans were found after some other incident brought them to hospital for investigation. Certainly your symptoms of tinnitus headache and dizziness etc seem to warrant a faster investigation, at least to me.

Wishing you all the best,
Windsong

[amymeri]

Butterfly

Welcome!  My first and only symptom was facial numbness, and I had a large neuroma.  My neurologists had a lot of theories about my symptoms but a tumor wasn't one of them!  I think your symptoms could easily be a neuroma (hearing loss and tinnitus) or something unrelated.  You can only tell with the MRI.  Do you have an ENT to seek out for help? The more I hear about national health from the UK and Canada, the less irritated I feel about the US health system (of course I am on the good side of the inequities!)

Maybe another Brit could give you some tricks of the trade in navigating the NHS~

Good Luck!!

[Obita]

Welcome Butterflyhugzs -

So sorry you need to do this kind of investigating.  I also hope you do not have an AN but if you do, at least you will have some answers and be able to get treatment for it.

The first step as others have said is the MRI.  And I also wanted to mention that you need to have the contrast injected so the tumor (if there is one) will glow on the films.  Many people have said they were given the MRIs without contrast which will not show the tumor.

Heres hoping you can get in sooner rather than later for that MRI.

Best of luck, Kathy O'Brien

[Larry]

Butterfly,

Given the nature of your other symptoms and your quality of life seemingly getting worse. I suggest you go privately to have an MRI. That can depend on your financial position but the sooner you get disgnosed, the better. or put some pressure on the doctors you are seeing to see if you can't "push" your way forward on the list.


Laz

[Joef]

Yes, Get the MRI with contrast as soon as possible .. waiting another 6 months should not make any difference if its a tumor, because they are slow growing .. but you will have the symptoms for another 6 months!, and a MRI will answer a lot of questions ..

but be forewarned .. it might not be a tumor *AN* .. it could be lots of things, that could cause these symptoms , but the MRI with contrast will elimiate the tumor question ..

[butterflyhugzs]

Thank you Phyllis for your reply
It is good to talk to someone who also has fms, when you had MRI did you have the contrast? My first MRI  I did not have contrast but did have some of the symptoms but not as bad as they are now. That was 18 years ago. The NHS is a bit of a nightmare, I am not really under any health professional at the moment they just refer me from one dept to another, pass me around and ask me the same questions but don't do anything. I am amazed that they are actually going to do an MRI
Thanks again

 

Hi Butterfly... welcome!  You are no bother. I am also a sufferer of FMS (fibromyalgia syndrome) but I understand your concern.

the true/only way to determine if you have an AN is through the MRI. Now, I have had some dealings with the NHS in the UK (my beau lives in SW London/Herne Hill and have had to first hand experience A&E and NHS) but Tony, on this site, is from the UK, rather versed and may be a best supply of reference in dealing with the NHS to help get you an MRI sooner than later. I also know the British Acoustic Neuroma site is not as active as this one but may have some info there as well.  I have had some of my English friends weed their way through the NHS recently and have gotten into dr appts and tests much earlier than originally booked.  I'm not sure if you are currently working with an ENT (ears/nose/throat) dr or a neurosurgeon, but like you, many brushed off my situation due to my FMS... I was the persistant one and hoping that your persistance, a little guidance (from Tony?), etc, will get you the MRI sooner.

Before you start to worry, let's see if we can get you that MRI first. No need to worry until the test is done and unless it comes back showing an AN. There could be many reasons for your symptoms, but we are good ears here as well and a good start to gaining your diagnosis.... (we give huggles too!).

Hang in there....
Phyllis

[butterflyhugzs]

Thank you Windsong I can really relate to what you are saying seems we have similar experiences. I also have other health issues recently diagnosed with IC which is a bit of a pain. It is so difficult to get anyone to listen here. I will go back especially if my headaches continue the last one was over two weeks.
Thanks again

HI Butterfly,

I can relate to all you have said here.
I have fibro also . I was almost blown away when i heard one of my specialists tell me that he thought my symptoms  were due to fibro when it turned out to be from an An.  That was a shock as i never brought up fibro in any conversations with him except once to say i had been diagnosed with that. For me, it was a non issue as i had other health issues which demanded more of my attention. After years of doing what it sounds like you have been, that is learning to "live" with all the nuisance symptoms and "shutting" up about why have i lost my hearing? why am i dizzy, why why why , and getting no answers, I finally  got an appointment in another city with a new doc who "listened" and ordered the mri which found my acoustic neuroma. Imagine everyone's surpise when i went back to the docs who had been following me for years to say, hey look at this....it was particularly poignant as i had asked a number of times, "you are sure i don't have a brain tumour?"

I do hope that you do not have an acoustic neuroma.
I do wish you could get an mri sooner than six months though. Is there any way you can stress to your doc that your symptoms are bad enough to warrant faster action, if only for peace of mind?
For a number of people, their ans were found after some other incident brought them to hospital for investigation. Certainly your symptoms of tinnitus headache and dizziness etc seem to warrant a faster investigation, at least to me.

Wishing you all the best,
Windsong

[butterflyhugzs]

Hi amymeri
Thank you for your reply, Can I ask you how long you had your facial numbness before you got a diagnosis? 

Butterfly

Welcome!  My first and only symptom was facial numbness, and I had a large neuroma.  My neurologists had a lot of theories about my symptoms but a tumor wasn't one of them!  I think your symptoms could easily be a neuroma (hearing loss and tinnitus) or something unrelated.  You can only tell with the MRI.  Do you have an ENT to seek out for help? The more I hear about national health from the UK and Canada, the less irritated I feel about the US health system (of course I am on the good side of the inequities!)

Maybe another Brit could give you some tricks of the trade in navigating the NHS~

Good Luck!!

[butterflyhugzs]

Hi Kathy
Your information was very useful I have never heard of contrast injection before. When I had MRI about 18 years ago I did not have the contrast injection so I will ask if they are going to do it this time.
Do you know if it is expensive? Maybe that is why they did not do it before.
Thanks again

 

Welcome Butterflyhugzs -

So sorry you need to do this kind of investigating.  I also hope you do not have an AN but if you do, at least you will have some answers and be able to get treatment for it.

The first step as others have said is the MRI.  And I also wanted to mention that you need to have the contrast injected so the tumor (if there is one) will glow on the films.  Many people have said they were given the MRIs without contrast which will not show the tumor.

Heres hoping you can get in sooner rather than later for that MRI.

Best of luck, Kathy O'Brien

[butterflyhugzs]

Hi Laz Thanks for your reply, I will look into private but I think it will be out of our price range. But it’s worth looking into and would give me peace of mind if we could get it done sooner.
Thanks again

 

Butterfly,

Given the nature of your other symptoms and your quality of life seemingly getting worse. I suggest you go privately to have an MRI. That can depend on your financial position but the sooner you get disgnosed, the better. or put some pressure on the doctors you are seeing to see if you can't "push" your way forward on the list.


Laz

[butterflyhugzs]

Hi Joef 
I feel much better after everyone was kind enough to answer me and know that a MRI is the way forward. If it is a tumour I think I could have had it a long time as I have had the symptoms for a long time but this last year they have got a lot worse, the tinnitus has got much worse and even loud sounds don't seem to mask it. The headaches last for weeks now and the dizziness is always with me. But it could just be my fibromyalgia. Do you know of anyone who gets the fluid feeling in the affected ear?
Thank you so much for your help
 [iquote author=Joef link=topic=1571.msg16307#msg16307 date=1152485829]
Yes, Get the MRI with contrast as soon as possible .. waiting another 6 months should not make any difference if its a tumor, because they are slow growing .. but you will have the symptoms for another 6 months!, and a MRI will answer a lot of questions ..

but be forewarned .. it might not be a tumor *AN* .. it could be lots of things, that could cause these symptoms , but the MRI with contrast will elimiate the tumor question ..

[ppearl214]

Hiya hugzs!

Yes, all of my MRI have been with contrast (usually, the start the process without constrast to get a regular view... then come back into the scan room to inject the contrast... you don't feel the contrast at all as it's doing its thing).

Oh, many of my UK friends also share with me their being passed around in the NHS system. I have a dear friend with gyn issues... passed around, overlooked, gets appt, goes to dr office to find out they left the office without informing her, she goes home, blah blah blah.  I know many go to the UK for the NHS (free medical) but I have to say, for my friends that have been passed around, my heart goes out to you all. Hang tough, being a royal pain in the arse and be persisitant to get that MRI.  I have faith in you to stand your ground and get the medical attention you need.

Phyl

Thank you Phyllis for your reply
It is good to talk to someone who also has fms, when you had MRI did you have the contrast? My first MRI  I did not have contrast but did have some of the symptoms but not as bad as they are now. That was 18 years ago. The NHS is a bit of a nightmare, I am not really under any health professional at the moment they just refer me from one dept to another, pass me around and ask me the same questions but don't do anything. I am amazed that they are actually going to do an MRI
Thanks again

 

Hi Butterfly... welcome!  You are no bother. I am also a sufferer of FMS (fibromyalgia syndrome) but I understand your concern.

the true/only way to determine if you have an AN is through the MRI. Now, I have had some dealings with the NHS in the UK (my beau lives in SW London/Herne Hill and have had to first hand experience A&E and NHS) but Tony, on this site, is from the UK, rather versed and may be a best supply of reference in dealing with the NHS to help get you an MRI sooner than later. I also know the British Acoustic Neuroma site is not as active as this one but may have some info there as well.  I have had some of my English friends weed their way through the NHS recently and have gotten into dr appts and tests much earlier than originally booked.  I'm not sure if you are currently working with an ENT (ears/nose/throat) dr or a neurosurgeon, but like you, many brushed off my situation due to my FMS... I was the persistant one and hoping that your persistance, a little guidance (from Tony?), etc, will get you the MRI sooner.

Before you start to worry, let's see if we can get you that MRI first. No need to worry until the test is done and unless it comes back showing an AN. There could be many reasons for your symptoms, but we are good ears here as well and a good start to gaining your diagnosis.... (we give huggles too!).

Hang in there....
Phyllis

[Jim Scott]

Butterflyhugz:

My wife (age 53) has suffered with fibromyalgia for the past dozen years and so, I have some understanding of your problem.  The fibromyalgia is either ignored by some physicians or else it's used as a 'catch-all' diagnosis by others.  Maddening!  Frankly, she has never had most of the symptoms you mention, such as tinnitus.  Occasional (rare) facial pain, yes, but no dizzyness or ear problems.  However, as we are all individuals, it isn't wise to make direct comparisons to others, even other people with fibromyalgia...so I won't.    

It appears as if you have already decided to get the MRI scan, which it seems is the best course of action for you, now.  Too bad that you have to wait so long to get it.  Acoustic neuromas may grow slowly - but they can also have 'spurts' of growth - which may be what is happening in your case.  The MRI test will  solve the mystery. 

I have no idea how the U.K.'s National Health System bureaucracy 'works', (a relative term) but can you apply for a waiver of some sort to get 'moved up' on the MRI-candidate list?   If so, I would do it....or find a physician to recommend you receive an MRI scan, as soon as possible.   When it comes to diagnosing AN's, time is not necessarily on your side because removal (via radiation) is much easier when they are small.  I only wish I had responded to my symptoms and been checked out years earlier than I was. When I eventually developed symptoms severe enough to drive me into a doctor's office, the resulting MRI my doctor ordered (and the diagnosis of an acoustic neuroma it clearly showed) necessitated a surgical removal due to the size (4.5cc) of the tumor.  Fortunately, the surgery was extremely successful and I am well on the way to a complete recovery, sans AN, with the only permanent damage being a total loss of hearing in my left ear, which was expected - and manageable.  I suggest that you try to get the MRI as soon as possible.