Starting to feel worried here!

[Tinks]

Hi all I am new here, sorry if this is long but need to tell you all as I need reassurance lol!!

For the past year and a half I have been having problems related to my ears and other issues. I haven't felt myself for a few years and feel easily tired too.It started off with a thumping noise in my left ear to sounds.  I used to plug the ear up but the thumping strangely continued to sounds. I then noticed that I found conversations hard to understand but only certain environments. I had trouble on the phone when using my right ear as the sound would cause my left ear to thump and found it hard to understand again. If I listened through the left there was no problem.

I then started to get vertigo attacks - the first one lasted for three weeks and was awful - I was told I had labrynthitis. Since then I get mild vertigo every now and then but I get a lot of unsteadiness and have had a few scary episodes where I could be walking the dog or just getting on with my business and I feel I lose co-ordination esp my legs and it is hard to coordinate to walk - I feel pretty bad with it  and need to rest. Last year when I had this, I was at a friends and had to get home to bed. My son was talking to me and I could hear the words but they made no sense.

When I get a cold, I have blown my nose and my cheek goes tingly and then I get vertigo or I just get vertigo. The vertigo seems to come in small episodes that may be intermittent and last a couple days or so. It is not as bad as it first was with the three week episode I had in the beginning (thankfully!). I have been have erratic facial twitches too. I have been getting an awfully loud whooshing which my neuro said is vascular tinnitus. I have been having autonomic testing due to problems with my heart rate and BP.

I began to realise that it was when people sitting on my right side were talking, my left ear would thump to every syllabul. Then one night I listened to my iphone through headphones and my left ear thumped like crazy - took out the left earphone and the ear carried on thumping - took out the right one and it stopped. Weird! I then noticed at other times that my left cheek would twitch to noises coming into the right ear too.How can noises from my right affect my left ear/cheek I thought. I had been seeing a neuro due to headaches and my ears so the next time I saw him, he referred me to an ENT. My headaches are one sided above my left ear to the back and at the base of my skull into my neck. I also get orthostatic headaches,  pain in outer ear canal and eye socket, teeth pain etc

I saw this new ENT last Friday and they did the usual tone hearing test - I can hear a pin drop. The test came back normal range with right ear slightly lower than the left. No problem.

Tuning fork completely lateralised to the left, so they did a tymp which was fine, my ears look completely normal too. They did a bone conduction hearing test but I do not know how that came back. He asked me a lot of detail about if there was autonomic dysfunction in the family - I said no and asked if it were related - he said no.

I got the guts to tell him about the right ear hearing making the left ear thump and he explained this is possible as there is a cross reflex in the brain and something is awry. He is ordering an MRI (2nd Jan) and is sending me to an audiological scientist for more testing.

He wrote on the form for MRI, acoustic neuroma. So being inquisitive came home and looked this up. The more I have read about it the more I am worried. I have even read that this can cause problems with heart rate and BP. But I had a brain MRI WO/C about a year ago and keep telling myself that this would have shown anything going on but the ENT said he needed an MRI of the IAM and CPA which will show more detail.

What could all this be....could this be due to an AN - I am starting to wonder.

[CHD63]

Hi Tinks .....

Thank you for describing your symptoms so well.  It helps those of us on the forum to have a better idea of what you are experiencing.

Try to stay calm until you have that MRI on January 2nd.  Make sure it is with contrast this time, unless you have medical issues related to the Gadolinium dye they use.

Remember too, that all symptoms become worse when one is stressed so do deep-breathing, yoga, or whatever works for you to stay as calm as possible.  Drastically cutting down on caffeine helps too.

That being said, keep in mind that your doctor is ordering the MRI to rule out an AN, not to confirm it.  There are several other medical conditions that can mimic an AN, such as Meniere's Disease, for one.  Try to keep an open mind until you know whether it is an AN or not.

I, personally, have not ever experienced the thumping you are describing.  It's possible it is a type of tinnitus that is triggered by loud noises.  My tinnitus really screams when I am in a loud environment or a sudden loud noise ..... but no thumping.

Many thoughts and prayers and do let us know how you are doing or what you find out.

Clarice

[Tinks]

Hi CHD and thanks for your reply.

Trying not to think too much but the more I read the more I am thinking 'hmmmm this sounds familiar!'.

The ENT did say that the thumping is a tinnitus as well as the whooshing (vascular tinnitus) and the high pitched ringing I get too. I have noticed that in my right ear I have also been getting a different ringing - very loud like a school dinner bell or the like with a second of deafness before it starts in that ear.

With the thumping, I am sure I can feel movement of my ear drum and at times it can feel rather uncomfortable when it is particularly strong. I can set it off myself by listening through a headphone in my right ear - the left ear will gradually start thumping quietly then get louder and louder the more I listen.

I have checked out about the cross reflex and sounds go in a figure of 8 around the brain from left to right but for some reason mine seems to get stuck at my left ear causing thumping. This is why I am having further testing I expect.

You mentioned menieres and my neuro had previously said I had menieres type sx's as I was having ear pressure and vertigo at that time but the more I explained my symptoms he said it seemed more to be of cochlear pathology.

Have you an AN CHD? If so what were your early symptoms (if that's ok to ask?)

[PaulW]

There are lots of things that can cause AN like symptoms. Most people wont have one.
You said you had an MRI without contrast. If there was a medium to big AN it would have been easily detected, even without contrast.
The contrast is needed to catch the small AN's

[Tinks]

Hi Paul

 I would have thought so too after seeing some of the pics on this and they look pretty large, so would think the last mri would have definitely picked anything up. I am just hoping it is not this and there is another reason for my symptoms.

[CHD63]

Yes, Tinks, I was first diagnosed with a 2.0cm AN in January, 2008 via an MRI with contrast.  (See my signature at the bottom for the rest of my history.)  The vast majority of the relatively rare acoustic neuromas are slow growing.

That being said, I had an MRI without contrast 14 months earlier (November, 2006) that was perfectly clear of any tumor.  Paul is right, though, that a tumor the size of mine would normally have been detectable on an MRI without contrast.  My neurosurgeon thoroughly examined the CD of my November, 2006 MRI and compared it with the January, 2008 MRI and could find absolutely no sign of it on the 2006 scan.  Therefore, he felt I had a rare, rapidly growing AN.  Indeed, it grew from 2.0 cm on the MRI to 2.6 cm at surgery three weeks later.

Not telling you this to scare you, but it can happen.  Paul is right that most people do not have one, but there are rare instances where a subsequent MRI will show an AN.

Thoughts and prayers for an accurate diagnosis and successful treatment.

Clarice

[leapyrtwins]

Sounds like your doc is simply trying to rule out - or confirm - an AN.

Some of your symptoms might indicate one, but then again they might not.

Only way to tell for sure is with an MRI w/gadolinium contrast.

Good luck,

Jan

[It is what it is]

So, please let us know what you find out in January.

 Karen

[Tinks]

I will get back on here once I have the results of the test. Have appointment through for audiological scientist that I have had to rebook for February unfortunately but will maybe give me an answer to these problems too.

I keep thinking positive as I really do feel if it was a neuroma causing my symptoms that woul have shown on the MRI last year. Thanks for all your replies