Newbie - starting the diagnosis journey to who knows where

[Glasgowguy]

Hi I'm new to this having stumbled upon this great forum when looking for information on AN's. Its a great resource and support for everyone - what would we do without the internet?
I feel a bit of a fraud at this point because i havent been diagnosed but having read the posts i thought it might be worthwhile for me to chart my journey to diagnosis or non diagnosis and help others who may be in the same situation.

My journey began with a company voluntary medical with a private screening firm in december and after going through all the usual checks and recieving a clean bill of health i was put in the audiogram booth and had my hearing tested. After a short while the nurse came into the booth to check the connections as she said she thought there might be something wrong with it. We started again and on my left ear test i could see her pressing a button and wanted to respond but couldnt hear anything until much later when she was changing the levels.

After it i saw the doctor who advised that the hearing loss in my left ear was excessive for my age and comapred to my right which was fine. We discussed other symptoms re - dizziness and balance problems and in truth its something i have suffered with since about 2002 and was diagnosed as having labrynthitis and given what amounted to travel sickness tablets so whenever it occurs i dont go to the doctor I just learned to live with it. Its not like vertigo where it floors me so never thought it was a big issue.
The next issue was my tinnutus in my left ear, i have had it on and off for about a year but since about September its been a constant tone and very frustrating when there is no background noise to block it out. When we went through all this he recomended i make an appointment with my GP within the week but before i could my GP called me after getting a letter from the screening company.

I had my appointment just before xmas and reviewed the results of the test and background info he checked my ears and found nothing obvious. He has recomended i visit an ENT consultant and has made an appointment for that which i await. He said they will want to test my hearing again and may recomend a scan to check for possible reasons for nerve damage.

The inquisitive side of me led me to hear firstly because of the symptoms and route the doctor is going down and secondly because it was only later i realised that my mum had an AN removed when i was a teenager, it was successful but she lost all hearing in the ear but i remember at the time the worry about affecting the facial nerve.

I havent read anywhere that this is something commonly passed on so it may just be another coincidence. Anyway I feel i have rambled on and written too much but i think i will update it after the next step whether it is a positive or negative diagnosis.

[Jim Scott]

Glasgowguy ~

Hello and welcome to the ANA Discussion forums.  No need to apologize for posting without an acoustic neuroma diagnosis.  You're seeking information and your symptoms are similar to AN patient's pre-diagnosis symptoms so your joining is perfectly understandable.  I trust we can be of some help.

I'm not a doctor but I agree that your symptoms mimic those that acoustic neuroma patients experience, although there could be other causes.  Your one-sided hearing loss is suspicious considering no problems were found during an ear examination.  I would advise you to urge the ENT physician to order an MRI scan to determine if you have an acoustic neuroma.  Frankly, an MRI scan is the only definitive test to discover an acoustic neuroma although some have been discovered with a CT scan.  However, small tumors are best found via the MRI but the 'contrast' dye should be employed during the test for the most accurate result. 

Hereditary ANs are relatively rare but that is a different subject for another post that will be of greater value if you are found to have developed an acoustic neuroma.   One step at a time.

Thanks for your kind words regarding this website and I wish you success in discovering the cause of your unilateral hearing loss and other symptoms.

Jim

[TheSlimCognito]

I am in the same boat as Glasgowguy, I am new here, and I have not officially been diagnosed. But I have been putting up with related symptoms for years. I unfortunately do not know exact times or days these started, as for a long time i did not think they where related, and just assumed it was by chance these happened.  I do not know when the lack of balance started as i used to sleep with my bedroom light on, that was until my eyes started getting hypersensitive. That is when i noticed i could not balance in the dark. My light switch is 6 feet away and i cannot make it without a flashlight. Any time a car drives past i get blinded and get dizzy. I have tinnitus for sure, and have for a long time. I have a hard time hearing higher frequencies, and a noticeable hearing loss on my left ear. I never imagined all of these could be connected. The main reasons why i started looking into it is because my doctor has no clue about AN and my symptoms have gotten worse, I am having minor headaches all day now, and now it  feels like someone is trying to blow my head up like a balloon.  I even lose train of thought more often.  I do know that i have been suffering with these symptoms for 8+ years now that I can recall.  Is memory effected by AN too? like does it cause you to lose train of though just randomly or just not remember things? I have an appointment in 2 months for a complete scan. I will set a calendar entry to remind me to post results.

[Nuttyneddy]

I'm glad to hear that it's OK to post here without a firm diagnosis, I have been avidly reading everything but not sure whether I should say much.  I am in the same boat, awaiting an ENT and MRI appointment currently due to unilateral hearing loss and distortion, balance issues and raging tinnitus which my doctor believes are to do with the nerve.  Glasgowguy I'm guessing you are in the UK too?  I hope you get your appointments through quickly (I am learning that "as soon as possible" actually means several weeks!)

SlimCognito I know I am having extreme trouble concentrating on anything - any time I have to concentrate the tinnitus gets even worse, and my head constantly feels like it's full of cotton wool (loud cotton wool!)  I think worrying about it doesn't help either, as it takes up brain power we should be using for other things.  I hope that your results will be good ones, and help you get to the bottom of your symptoms.

[kcarloy]

I think the difficulty thinking and concentrating is more related to your stress and worry over maybe having an AN? Once you have an MRI, you will know. Its stressful not knowing! Good luck!

[Alison]

Hi everyone,
Glasgowguy, and Nuttyneddy are you both living in Scotland, or the UK ? I'm in the UK, so can give you the present nhs Uk experience if you are. I'm afraid to say its a convoluted path to diagnosis and treatment.

I too lingered on here before diagnosis and was pretty sure from the reading I did, that I had an AN, but it was still a shock to get the MRI results confirming it as ANs are 1 in 100,000 or 10 in a million.

But as other things can mimic the symptoms you may not have an AN. Many people have understandably appeared on here and then found through MRI that they do not have an AN. But the MRI is the definitive test. I did not have contrast with the MRI that picked mine up by the way.

Please post again with any questions you may have. I'd be glad to help.

Alison

[Nuttyneddy]

Alison I am in Wales.  Any information you can give would be fantastic, thanks 

The biggest worry I have at the moment is not knowing what is happening!  I was expecting to have to wait for an appointment for the MRI, NHS waiting lists being what they are, but I had it in my head that they'd write and say "come in 8 weeks" or something, not that I just wouldn't hear anything at all.  I don't want to look like I'm nagging, but equally I don't just want to sit here for months if I've fallen through the cracks, or the letter has gone astray or something.  I heard my doctor dictating the letter to the hospital and he said I should have it as soon as possible, but it will be four weeks next week and I've heard nothing.  My husband wants me to ring the surgery on Monday (I think he's getting tired of me stressing about it) which I might do - at least it will put my mind at rest.  Sod's law will say that the letter will then arrive on Tuesday (here's hoping!)

I do have one question - when you have the MRI, will the person doing the scan be able to tell you what they see?  Or do you have to wait for the doctor to tell you the results?  I think Islandgirl said she had to wait nine weeks for her results, I think I will be out of my mind by then!

Thanks for your help 

[Glasgowguy]

just an update i have my appointment through for the end of february but its in the first instance to get another hearing test prior to seeing an ENt consultant so that appointment may be some way off. I will see how it goes with the appointment as I have private medical cover that i might just use if the waiting time is too long. Some days are better than others today my hearing went completly  in my ear for a minute then returned, not sure what caused it.

[Alison]

Hi glasgowguy,

I had hearing that went and then came back then nothing for 3 years till the vertigo hit. but yours may be unrelated to ANs so don't worry. The MRI will rule it out or in.

Not too long to wait till end of Feb, is that for your MRI? there is more UK chat about MRIs with nuttyneddy and me on the inquiries post if you are interest in UK stuff. Hope you get a happy result. If it is an AN I know Scottish patients I can put you in touch with.

Alison x

[Glasgowguy]

thanks alison, no thats just for another hearing test ! before I then get an appointment with the ENT. Perhaps they need to verify my results with their own tests first which is understandable.

[jesday]

Hi all, looks like I found the right topic to join. I too have not been officially diagnosed with AN. I found out about AN inadvertently while looking into causes of unilateral hearing loss in my left ear. The ENT I recently went to discovered it and scared the heck out of me by saying it could relate to many things, MS for one. The ENT was one of the last visits I've made over a year to various doctors and specialists trying to discover the cause of all my symptoms.

In my research checking to see the relevance of unilateral hearing loss in connection with MS (which didn't really show any connection by the way) I stumbled across references to AN. Oh my gosh, everything I was reading about AN fit my symptoms perfectly. The only thing that didn't was facial paralysis.  But 24/7 tinnitus, unilateral hearing loss, constant headache, dizziness, sinus or head pressure, and many times my internal ears felt so hot it would actually wake me up.

I went back to my GP who ordered an MRI which I will be getting tomorrow. I am feeling kind of weird at the moment though because part of me feels like I will finally figure out what's wrong with me. But how can one really be happy about the prospect of a brain tumor, benign or not? And the other part is scared it won't be AN because that puts me back at the drawing board with options running out as to what is going on and I'll feel this way forever. Not that I'm dramatic or anything.

One symptom I have that I haven't heard or read anyone else talk about is what I call the squeezing turtle neck. It literally feels like something is choking my neck right up under my jawbone. I don't have difficulty swallowing or breathing and nothing is swollen. It's just a horrible sensation where I want to rip away any collar on my clothing, unzip my coat or whip off a scarf.  Has anyone else experienced this sensation or something similar?

I'm not sure where I'm going with this post. I guess I just needed a place to say I strongly feel I have AN without feeling too stupid or upsetting family members. Hopefully the MRI will be conclusive. If my feelings and instincts are correct I will definitely be a regular member here. Thanks for listening (reading).   

[ampeep]

Am surprised there are quite a few folks here that haven't been officially diagnosed with AN.

I had no idea of what it was until I was diagnosed.