My symptoms don't match, maybe discovery of AN was just a coincidence?

[caseyflanagan]

Hi all,

Thank you for reading my first post.  I was diagnosed with a small AN (10x6mm) twelve days ago.  The physicians with whom I've consulted are mixed on whether my AN is the cause of many of my symptoms, so I am doing my own self-discovery to see what other things could be happening in this head. 

Symptoms:

Tinnitus:  Began November (whir paired with other high tones)
Dizzy:  Yes, but not sure how vertigo differs, but spinning isn't very common although it happens.
Fullness in ear: Yes
Hearing loss:  None.  When I first went to the ENT, my audiogram was "normal" for a male my age (6 weeks ago Dec 24).  This is a red flag for me that something else is happening in the IAC/IAM

My most bothersome symptoms are these:

I feel sick.  Like a fever with no temperature or flu with no sinus or stomach problems. 
I often feel like I might if I've depleted my blood pressure medicine and I've been without it for a few days.  I'm feeling it in the head and upper body.  My BP is always fine when tested.  With this, I have "stage fright throat" as the ENT decribed it. 
Atypical fibrillations:  Like the "holiday heart" I used to get when drinking heavily.  Not dangerous, but make me feel sick nonetheless (like I'm off BP meds)
Brain zaps:  This is the name we discovered for this symptom, it usually is associated with "antidepressant discontinuation syndrome" when people do not properly wean off of SSRI drugs.  The sensation is the same as you would feel with a fever when you dart your eyes left or right and feel the brain kinda "zapping."  I remember it from being sick as a child. 
Tiredness:  By 1pm daily I need to recline and shut my eyes for a nap or deep rest.  At 4pm, I feel very ill with the symptoms above and a nap will help alleviate the symptoms.  Hard to do at work. 

Anyone else have these?  Right now I'm exploring other intracanalicular growths that could appear as AN on MRI's.

Anyone got something?  Did  you have these symptoms?
   

[Troutbc]

Hi!

I was just diagnosed in February with a 2.8cm right side AN, and just like you, have hardly any of the typical AN symptoms. No hearing loss (audiogram was perfect), no tinnitus, but I do experience severe dizzy spells and occasionally feel a fullness in my right ear. My neurologist ordered an MRI because aside from the dizziness I had sensitivity to light, motion sickness, numb hands, and occasional muscle tremors, and pretty much constant fatigue. Some days like you say I would feel flu-ish but with no temperature! Just felt physically sick many days over the past few months. And voila... An acoustic neuroma! I also wondered if it was a coincidence. I suppose the way the tumor sits and if or how it touches the brain or nerves can throw your whole system out of whack. It is possible that if the flow of CSF around the brain is blocked or interrupted that can cause weird symptoms too.  But yes, I have experienced some of your symptoms and I started to worry that I have two things wrong with me!

I met with dr barker, possibly one of the best neurosurgeons for ANs in the country, and he didn't bat an eyelash when I mentioned these symptoms. He just told me I had a acoustic neuroma and it was better to remove it sooner rather than later but was by no means "urgent."

I would also be interested if anyone else experienced atypical AN symptoms. In particular sensitivity to light, general malaise, and also muscle tremors.

[ANGuy]

Both of your symptoms are typical, not atypical.  Those symptoms are the symptoms of an AN.  I felt the same way initially because my symptoms are not constant, they come and go to the point of rarely, but sometimes, I am miserable, and most of the time I feel pretty good.  The neurosurgeon of my team thought that was unusual, that my symptoms should be constant and that my symptoms could be a coincidence.  The neurotologist thought that was a borderline stupid.  "You have a tumor on your balance nerve, that is why you have those symptoms, period."  The second answer is the correct answer.  The neurosurgeon has since moved on to a different facility and the neuroto ENT Dr actually seemed to be a bit relieved by that.

Your symptom do match an AN.

[Mickey]

Hi! Yes alot of these symptoms come along with having a AN....  I`m a W+W patient since diognosed in 2007 when actually addressing my problem.   I fight every symptom tooth and nail with a pro active stance (W+W BRIGADE board) and have remained stable, now 66 years old.  I do have to remember I`m getting older also but actually feel the under the circumstances do fell better than 10 years ago.....  Wishing you all the best! Mickey

[Troutbc]

What about symptoms coming and going? There are days when I am totally fine- completely normal, while the next day I am completely debilitated with dizziness/nausea/stiff neck/fatigue. It just seems strange because so few people seem to have these kinds of symptoms.  They certainly aren't typical aside from dizziness! My doctor originally thought I had Lyme disease given my long list of symptoms- how crazy is that! It was when I went an entirely sleepless night due to my eyes hurting when keeping them closed that the neurologist ordered an MRI! You don't see many AN patients talking about their symptoms being debilitating either...any other people out there like this?

[rupert]

This kind of made me laugh a little.    All of those symptoms you described are sooooooo  typical of AN's.  Almost everyone who has an AN  has these symptoms and yes they can come and go with the wind.  I have a saying. It's the gift that keeps on giving. 

[ANGuy]

What about symptoms coming and going? There are days when I am totally fine- completely normal, while the next day I am completely debilitated with dizziness/nausea/stiff neck/fatigue. It just seems strange because so few people seem to have these kinds of symptoms.  They certainly aren't typical aside from dizziness! My doctor originally thought I had Lyme disease given my long list of symptoms- how crazy is that! It was when I went an entirely sleepless night due to my eyes hurting when keeping them closed that the neurologist ordered an MRI! You don't see many AN patients talking about their symptoms being debilitating either...any other people out there like this?

To be as clear as I can, yes my symptoms come and go and yes they can, at times, be debilitating.  While it's been a rare event in my case, I have been reduced to crawling to the bathroom because I can't stand up and vomiting over and over again pretty much non-stop.  Not being able to stand erect, not being able to stop vomiting, not being able to get the world around me to stop violently spinning is debilitating.

There are things that can mitigate these symptoms or even stop them, and some don't get them as severely or very often, but most of us do to some extent or another.

[ANnIdaho]

Hi,

Actually your symptoms seem normal for what i"ve been reading.  I was diagnosed in early March with a small AN 9mmx5mm totally in the IAC.  I had been experiencing strange sensations in my head and side of face, like tingling and then pressure.  I brought it up to the doc and since my mother had died young from an aneurysm she ordered and MRI.  Surprise surprise, didn't expect them to find anything.  I too have times where my ear feels full.  By the end of the day after working on computers or out in the garden my head just hurts not a deep inside head ache but actually the scalp hurts.  As I look back this little bugger has been probably growing for some time (as most do) and I recall sporadic tinnitus (which I had really gotten used to) and over the last few years sporadic acute stabbing pain in my ear that only lasts like 2 seconds...weird.  I like your description of Brain zaps! That's exactly what I feel sometimes.

I actually have had that same feeling of being sick.  It started a few years ago and every few months for like 2 or 3 days I just feel kind a quesy, no fever, run down but no real sickness.   I always thought it was maybe just a mild case of food poisoning but one can't get it that often! 

My VNG balance testing did show I had a significant deficient on the AN side but I really don't feel my balance is that bad.  That's why I feel it's been growing slowly and my body has been slowly compensating for the loss signals from that side. One surgeon explained that my headaches/ear fullness, tiredness etc is my body worn out from having to compensate for the balance nerve dysfunction.

Have you had any of the VNG testing done? They can tell what branch of the vestibular nerve is affected (superior which is adjacent to facial nerve or inferior which is adjacent to the hearing nerve).  If you take a circle and treat it like a clock the 12-3 quadrant has the facial nerve (VII), the 3-6 has the cholear part of the VIII cranial nerve, the 6-9 quardant the inferior branch of the vestibular nerve (VIII) and 9-12 has the superior branch.  (The doc from HEI explained it that way and that was really nice to have a visual diagram).

Keep us posted in how you are doing.  You aren't alone. I'm slowly learning that myself.

Bonnie

[robertweeks]

Greetings,

I am interested in this thread because I just had an appointment yesterday with a neurosurgeon for my AN diagnosis and came away very angry and dissatisfied. 

My MRI showed an AN (right side) of 10mm x 10mm x 17mm

I have been having symptoms for over a year, as follows:

headaches, nearly continuous though not very bad
hearing loss (moderate according to audiologist, very slight according to neurosurgeon)
tinnitus in right ear
minor nausea, intermittent/occassional, some evidence of declining frequency
poor balance, peaked before Christmas when I started using a cane to avoid falling, diminishing now
earache, right side, nearly continuous
pressure in the right ear, continuous
as the original poster stated, I feel ill a lot, though not severely
exhaustion, can't make it through the day without napping anymore, most days

The neurosurgeon I was referred to by the ENT told me it was impossible for me to have these symptoms due to AN.  He used the word "impossible" more than once referring to headaches, exhaustion, ear pressure.  He said it was unlikely to be the cause of my earache.  He said the AN was the likely cause of the tinnitus and balance issues.  To be fair, I am not clear if he meant impossible for an AN of my size, or impossible for AN in general, though I am sure he made the "impossible" comments as general statements, whether he meant them that way or not. 

He also said that any surgery attempt would be 70% likely to result in total hearing loss of the affected ear, which is certainly contradicted by what ANA has to say about it. 

He recommends doing nothing and getting another MRI in a year.  In the meantime, I have left my job (of 24 years) because I can no longer do the work in a consistent or quality way and because I can't get through an 8-hour work day without taking a 2-hour nap in the afternoon. 

I am spitting angry about being dismissed like this, but perhaps I do need to consider the possibility that something else may be wrong as well, which is what the neurosurgeon said. 

Very interested in any responses.

[alabamajane]

Time for a new neuro sounds to me.  Just my two cents. You don't have to be "dismissed" by ANY dr without taking action. At the very LEAST a second and third opinion and a change.

Get a copy of  MRI CD and send to House Clinic or any one of those that will provide a free phone consult PLUS accurate, knowledge advice in a COMPASSIONATE manner. THEN you will have more accurate info to make an informed decision. if you have already been compelled to quit a job due to health and feeling bad , how could you wait a year for next MRI??

You already know you have the AN,, now you need to find a Dr that will help you make an appropriate decision about moving forward and hopefully feeling better.
Good luck to you!!!
Jane

[robertweeks]

Thank you Jane.  Am awaiting a reply from House Clinic.