Undiagnosed and bewildered

[RichardS]

I have been walking around the edge of your AN land for some time now, and your collective wisdom and courage has been of enormous assistance to me. Can you help me a bit more? I should say I am in the UK - as our health services are quite different, as will become clear.

I was referred to an ENT in September 2008 having experienced increasing difficulty in following conversations in noisy environments. I was given a hearing test, and the audiogram showed significant loss of hearing on the right side at high frequency. I was referred for an MRI (without contrast - didn't know enough to make a fuss at the time)

While waiting the 10 weeks to hear the results of the scan, I became convinced something was seriously wrong. By the end of that period I had accumulated the following symptoms (some of which may have predated the scan). On my right side only I have high frequency hearing loss, continuous high pitched ringing tinnitus, a tingling sensation in the cheek and eyelid twitches. I frequently catch my right cheek and lower lip between my teeth. My right ear feels different to the left, though I can't quite describe how, like it's a little more raised from the skull maybe.

On top of that I now get dizzy regularly, best described as a feeling that my brains are not attached to the skull anymore, and wobble around when I move my head or eyes and for a while afterwards. I used to walk in the hills at night; I now can't cross my bedroom in the dark without hanging onto the furniture.

I finally persuaded my GP to give me the results of the MRI just before Christmas - and it was clear - I don't have a CPA tumour. But I still have all the above symptoms, and if anything they are getting worse. I have a level headed approach to health problems and I am sure I am not making the symptoms up.

I don't see the ENT again until the end of February, and I am at a loss to understand what is going on. All the research I have done on these symptoms leads me back here, though, as I'm sure you understand, I don't want one of these things. Has anyone any ideas for what to do next? I am thinking I should ask for another scan with contrast. Has anyone had clear scan and then found they have an AN afterwards?

Thanks again

Richard

[suboo73]

Hi Richard!  I am sorry you are not getting the answers you are looking for (yet!)  My MRI was done with contrast. 
However, i have read about others here who have had MRIs without contrast and they could see the AN. 
You can go to the main page and search for the discussions.
Anyway, I think it is possible that it was missed if you didn't have contrast - just my opinion.
I am sure others will chime in later to give you their thoughts as the day goes on. 

On a recent visit to a neurosurgeon, I asked if my tumor could be something other than an AN.
The answer was yes, but with a very small probability.  I asked because i wanted to know if the treatment would be the same.

Hang in there!  Stay persistant and you will get your answers.
Good luck in your research and keep us posted.

Sue

PS  My daughter spent Spring semester 2006 in Plymouth at the University and loved it.  She just told me the other night that if it wasn't so far away, she would live in the UK.   

[jazzfunkanne]

hi richard am from the uk as well, i got my mri with contrast as my tumour was on the large side and showed up very clearly, i have heard of many people in the uk who have had scans and they missed it, why dont you go private and have a mri done with contrast too put your mind at rest.

[ppearl214]

Hi Richard and welcome. Married to a bloke from Darlington (in-laws now in Shaftesbury-Dorset) and have spent quite a bit of time with some AN'ers in the South..... have had my eyes opened to the NHS (first hand and through stories shared)... can you note exactly where in the UK you are so some of us can better assist?

Cheers!  And again, welcome!
Phyl

[RichardS]

Thanks for the responses.
Sue, I read your earlier posts, and I have a horrible feeling that I too am going to be told that it is just aging, and to learn to live with it. I think I will need to be more insistent with the medics. At least thanks to this forum I now have enough knowledge to make a case. I am glad your daughter enjoyed Plymouth - it's a good town, though I havent been there for years.
Jazzfunkanne, thanks for the advice - I might look at getting a private scan, though I have no insurance unfortunately. Was your scan with contrast on the NHS? I am really cross that I didn't research the issues before the MRI so I could ask the right questions
Phyl, I am in Manchester, though I know Dorset well and love it. The NHS is improving I think, but it still frequently seems rather haphazard. I used to have private insurance, which was much more reassuring to use - the consultants made you feel they had the time to listen, which is not always the case in the NHS.

Regards

Richard

[Esperanza]

Hello Richard, 
Sorry you are having a tough time.
As we have all discovered to some degree, there sometimes appears to be very little knowledge
when it comes to ear problems!  I know that Meniere's often mirrors AN symptoms as does some other
conditions.
They usually use a contrast MRI to discount AN's before exploring other diagnosis.  You have Prof. Ramsden who is an eminent
specialist in AN's and other ear problems on your doorstep so it may well be worth seeking a private consultation to set your mind
at rest and also find out what is causing your problem.  If he can help you would be able to switch back on the NHS for tests and treatment
if necessary.

[mk]

Hello,

just a quick point: you said that the MRI ruled out a tumor on the CPA (and these are large enough that can be clearly seen even without contrast). However what about the IAC (internal auditory canal). ANs that are confined in the IAC are much smaller and sometimes difficult to diagnose without contrast. Even though they are small, they can cause lots of symptoms. Just a thought.

Marianna

[Jim Scott]

Hello, Richard:

I extend a 'Yankee' welcome and my regrets regarding your confusion about whether or not you have an acoustic neuroma.  This is certainly motivation for frustration.  I'll save some time by simply echoing Marianna's ('mk') comments that raise the possibility of an acoustic neuroma growing within the IAC, being quite small yet causing numerous symptoms, which is not at all uncommon for small ANs.  The best suggestion I can offer is that you make an attempt to secure another MRI, taken with the gadolinium contrast, to better expose a small acoustic neuroma 'hiding' within the IAC.  I realize the NHS is sometimes difficult to navigate and definitely a time-consuming endeavor but in your case, it would be worth the time and effort necessary to secure a conclusive diagnosis.   I wish you all the best as you seek an answer.

Jim

[Keeping Up]

Hi Richard

I am Cdn so can grasp how the system can work slowly.  Can you get a second read of the MRI by another radiologist or maybe get a copy of it for yourself? 

I have a small IAC AN - 5mm x 8mm and it was easily caught by a MRI without gadolinium so it is plausible (but I think the machine must have been a new version as I seem to be an unusual one around here with no enhancements).  After I found out the gadolinium is so common, I did find research that show it is pretty common to miss these things on the MRI (mine was unmistakeable) when no enhancement is used - but perhaps if you get another read, a different set of eyes will see if any shadows even warrant another MRI.  (I know MRIs are expensive so I wouldn't want to trot down the path of paying for one myself if the first was perfectly fine, and pretty much indisputable that there was/wasn't an AN).  With that decision, you can figure out the next steps.

Good luck - 10 weeks for a wait, I thought 2 weeks just about killed me.

Ann

[RichardS]

I am coming to the comlusion that another scan is going to be essential even if I have to pay for it. The first scan I had was of the IAM (internal auditory meatus). Does that include the IAC? I hate acronyms. I looked up Prof Ramsden, and he is the guy to see in around here - I will see if I can get a referral. I really hope it does not turn out to be Meniere's - in the UK that means an automatic driving ban until you have been symptom free for a year!
Thanks again for your support - it really helps. Waiting for the NHS really is a killer.

Richard

[jazzfunkanne]

hi richard , yes mine was on the nhs in glasgow, but i think because the tumour was so large they had to insert dye to have a better look, maybe a private scan would be worth it too put your mind at rest.

[Tumbleweed]

Hi, Richard:

You almost certainly do not have Meniere's. Meniere's presents, in part, with low-frequency hearing loss. Since you are experiencing high-frequency loss, this pretty much rules out Meniere's. Also, Meniere's patients experience disabling bouts of vertigo, and not just the disequilibrium you seem to be describing.

Not to minimize your symptoms; we here all know what you're going through and can empathize. But you should put your mind at ease that it's not Meniere's that you've got.

If it were me, I'd get a gadolinium-enhanced MRI at a facility that specializes in brain tumors. You don't want some radiologist whose specialty is the lungs, for example, trying to interpret what might be a small AN or simply the cross-section of an artery or nerve (which can be the same size and shape; i.e., the location of an enhanced object can determine if it's something that should be there or not).

Oh, and if I remember correctly, the internal auditory meatus is the hole the hearing, vestibular and facial nerves pass through as they exit the internal auditory canal (IAC) to enter the CPA. The internal auditory fundus, on the other hand, is the lateral extent of the IAC (that which is closest to the labyrinth). The IAC is roughly only 1 cm in length (0.7 to about 1.2 cm, depending on a person's individual anatomy), so if your radiologist was looking at the meatus, it's not likely they'd overlook an AN in the IAC itself, due to its close proximity. But stranger oversights have happened.

Best wishes,
Tumbleweed

[RichardS]

Thanks for that - it would be a major problem for me not to drive. I am seeing the ENT in a fortnight, and I will try to persuade him to get me a contrasted MRI on the NHS, failing that I will look at the costs of a private scan. Thanks to everyone for your advice, I can see my way more clearly now.

Richard

[RichardS]

I got to see the ENT guy yesterday, four months after my MRI scan. He was upbeat - "Your scan is clear! That is very good news!" Then I start to discuss the symptoms that have arrived/increased since the scan and he became a bit puzzled. "Have you been looking this up on the Internet" he says. What are you supposed to do when you have to wait four months from an MRI until you get to speak to the consultant? I would have gone quietly mad without information!
What depressed me is that he did not come up with an alternative diagnosis. He mentioned infections, but didn't follow it up. I really think he thought I was making most of it up. Even if you wanted to how could you make up tinnitus?
He ended up saying that I should come and see him again in 6 weeks, and if my symptoms persisted, he would authorise a second MRI scan. So I got a result from the consultation, but another long wait. At the end of that I still have to persuade him to write up use of contrast (which I don't know about of course, because I am not allowed on the Internet).
I think you could assign me to "wait and no watch" status!
Best wishes
Richard

[Jim Scott]

Richard:

Although a 'clear' MRI scan is always welcome news, the inconclusiveness that you came away with after the consultation with the ENT is definitely frustrating.  I suppose you have little choice but to be satisfied with a six-week interval that will very likely end with a 'fresh' MRI scan, and, one hopes, with the Gadolinium contrast to better determine the possible presence of a tumor.  I would have to consider your being placed in this state of uncertainty to be maddening enough to drive you to looking things up on the internet. 

Jim