SYMPTOMS: Seizures / Eye Troubles / 8th Nerve / Hearing Loss

[poohtray]

Hi Everyone! 

Yes, a newbie here. Maybe. Had trouble thinking of a subject that isn't the same here as everyone else's. After poking around in here, I think it would be great to have a compiled symptom list of AN. I realize that AN seems to be very unique, yet almost the same with everyone diagnosed with AN.

I have not been diagnosed with AN and I hope I don't have AN. Reading the symptoms here, seems too eerie though. A lot of my symptoms seems too similar to many of you. Maybe my an old audiologist of mine is right, he suspects AN.

Everyone's story is unique and different ...

I already had a hearing loss (high frequency nerve deafness). However, 2 winters in a row I had bad ear infections and problems in between with ear pressure and fullness. I experienced what I called 'ear blackouts' where I heard absolutely nothing. Then I would hear an 'eeeeeee' one loud tone at a time until some hearing came back if it came back. I lost ALL the low frequency tonal range of hearing that I depended on to hear and lip read. I was told by my ENT that it just happens. They fitted me for new aids which I could hear sounds, but certainly could not understand anyone at all. Everything was garbled. I thought there had to be some tests to determine why I lost my tonal range of hearing and why I had the symptoms I had, other than being told 'it just happens and nothing we can do'. Then I got a Cochlear Implant. To make a very long story short, right after surgery I started having problems with eyes/double vision, eyes not working together, vertigo, problems with fluorescent lights and seizures. It has recently been determined that something is up with the 8th nerve and another nerve (forgot which one) - they keep talking a lot about the 8th nerve and the brain stem. They believe something is pushing on the brain stem causing a lot of my symptoms. Along with seizures, eyes bouncing all over the place, balance problems when walking, a lot of neck stiffness and one sided head pain and various other symptoms, doctors want an MRI. To do an MRI, I have to have cochlear implant magnet removed, implant partially or all removed for the MRI. Due to my symptoms, an ABR and MRI should have been done prior to having a Cochlear Implant.

Has anyone here had seizures or eyes working independently prior to being diagnosed with AN? And facial drooping (paralysis) during the seizure? Some of the symptoms I have ignored and read on this site and have said 'oh, yeah - I have had that' or 'I have that' ... like funny taste in mouth, hand numbness or hand falling asleep for no reason, twitching, neck pain, tongue sore, throat sore (and nothing wrong they say) and a lot of ear canal pain (nothing wrong). Just recently during my last 2 seizures, I felt the strange facial sensation. Since, I can feel the strange sensation in my face. Often feels swollen, but doesn't look it. Nothing wrong with my current eyesight, but I often feel as if I can't see.

So, I hope I don't have AN.  If I do, this seems to be a great place for support and friendship. You all seem so nice! 

[kenneth_k]

Hi, I was just wondering.

If the thesis is, that you have an AN big enough to push the brain stem, then it must be visible on at CT Scan also. I think you don't have your implant removed for at CT scan.

Just a thought, I wish you luck.

Regards, Kenneth

[poohtray]

Hi Kenneth,

Hmmm, good question. A few doctors have said that a CT scan will not pick up an AN unless it is obvious and very, very large. I guess even a small AN can create all kinds of havoc depending on where it is? I'm not sure as this is all new to me. I have no idea how big or small an AN needs to be in order to put pressure on the brain stem or elsewhere to cause symptoms and problems. I'm told that all AN's should be monitored and detected best by contrast MRI's. Also, depending on where it is, A CT can't see it, but an MRI can? I've had CT's done and they want to do a 4th, but may skip over to do MRI. The doctor's really want the MRI.

You are correct, implant does not need to be removed for CT. ... they are trying to figure out what is going on with the 8th nerve / brain stem and another nerve.

Thanks for the luck! 
Kim 

[Jim Scott]

Hi Kim - and welcome.

I'm sorry to learn of your problems and hope you don't have an acoustic neuroma.  However, based on the symptoms you've described, it does seem possible, just as you and your physicians suspect.  The doctors are talking about the 8th cranial nerve because that is where acoustic neuromas are usually found.  If you have an acoustic neuroma and it's large enough to press on the brain stem, it needs to be addressed - the sooner, the better.  As complicated as an MRI scan would be, considering your cochlear implant, it should be done.  An MRI is considered the 'gold standard' in discovering ANs.  As you surmised, the tumor (almost always benign) may be small (or not) but it's location can be problematic.   

We're not doctors and can't offer medical advice but based on your stated symptoms and your doctors urgings, I would very seriously consider going through the hassle of having your cochlear implant magnet removed and submitting to an MRI scan.  At best, it can rule out any tumors.  At worst, it can find one - and then you can decide on how to address it.  We wish you well...and please let us know what you decide to do.  We'll support you in every way possible.  We do that a lot, here. 

Jim

[Cheryl R]

Kim,     I came close a little over a year ago to having to get a CI but I had surgery which improved my hearing.  I have had ANs on both sides so have NF2.      I would have got one with the magnet outside.      I have not looked into them too much so is it possible that yours could be changed to that type if yours is removed for MRI.         I know this might be a major event and also not what the ins would like.                Just curious.                    What area of the country are you in?          I assume in the US but not always here.                          This has to be a frustrating and scary event for you.
                                                Cheryl R

[Vivian B.]

Hi Kim,

I am sorry you have to go through this but I think it is important to find out what is causing your symptoms. You have described most of the symptoms that we here on the forum have been experiencing, aside from the seizures. I am not sure that I have seen people with seizures. However, whether or not it is an AN, it is benign and treatable and at least you will know.

Vivian

[Kaybo]

Hi Kim and welcome!
I don't have much to add except that I hope that you get some answers soon - I know that waiting is the hard part!

K

[Cynaburst]

a CT scan of the Internal Auditory Canal with contrast would show an AN if it was there.  I can't have MRIs anymore due to having a pacemaker, but I have CT scan with contrast to make sure that my AN does not recur. 

[wendysig]

Hi Kim and welcome

I'm sorry you need to be here, but glad you found us.  Even if it turns out that you don't have an AN (which I hope is the case) please feel free to hang around here for support.  A few members  of our group initially thought they could have an AN and were diagnosed with something else, but with simiilar symptoms.  We're here to help however we can, eveni it only by virtual hand holding.

As has been pointed out, a CT scan will also show an AN.  Did you doc mention the idea of a CT instead of MRI?

Wendy

[Betsy]

Hi Kim,

Just read your post and it sounded a bit familiar, except for the implant part.  My AN experience started out with episodes of severe vertigo, "eye jitters", a bitter metallic taste, numb tongue and alternating chills and heat waves, followed by nausea and fatigue.  I didn't consider them seizures because I was awake and terrified the whole time it was happening...I always thought you wouldn't be aware if you had a seizure.  But the ER doctor called it a seizure, which officially freaked me out.

Anyway, that's what got me to the hospital and diagnosed with my AN.  But it turned out the initial symptoms weren't caused by the AN, I also have Migraine Associated Vertigo (MAV).  Who knew you could have all the joy of a migraine without experiencing the pain?  These days it's well controlled with Topamax (prescribed for seizures and migraines) but I avoid things that used to cause me the painful migraines just in case...unfortunately really good things like red wine and bacon.  By the way, I've heard that some people with migraines are troubled by fluorescent light.  Email me if you want more info.

I hope you've been able to have further imaging tests without having your implant removed.  As everyone has pointed out, a CT with contrast with show an AN, plus it's faster and a lot quieter!

Betsy

[poohtray]

Wow! What great support here! 

Sunday I had another episode or seizure symptom or whatever they are. My right upper arm started to twitch late afternoon. It was one of those things you notice, think it’s odd and then forget about it. Later that evening, my face started to tingle right side and felt numb and my teeth clattered mainly right side uncontrollably. Very weird. Then it all suddenly went away like it never happened. --The week before my tongue felt like I burnt it when I had nothing hot. I had a cold fruit drink and an oreo pie. I get that metallic taste here and there.     ... I am also feeling fullness again and some 'eeeee' sounds. Very annoying.

I have to have an integrity test done first on my cochlear implant (been traveling to Mass Eye and Ear) and from there will be decisions on how to go about doing the MRI. Since I'm not able to use the implant anyway right now (makes me collapse), they are talking about removing just the magnet, part of implant or all. It will be a decision that will need to be made after integrity test.

Now I am greatly confused with the CT/MRI war still. Two have said that an AN has to be big enough to detect on a CT or can detect it well depending on location. An AN deep within the brain stem needs an MRI to detect. And a small AN can create problems. It doesn't have to be large to give off symptoms. Many off you have said a CT with contrast will work just fine in detecting an AN. I find it all so confusing. We do know for certain something is up with 8th nerve - whether AN or not. I haven't been told what else can cause all these symptoms other than AN. The doctors I have seen all agree an MRI is needed. Now is how they want to tackle it. I'm working with the docs at Mass Eye and Ear, so I'm confident they will figure it out.  --- I have had a CT prior to implant in 2006 and 2 CT's after 2006.

I had a CT with contrast and they say it came back fine and that is why MRI is needed because of symptoms. I agree with doctors to having the MRI and that it should be done. I have the kind of implant where the magnet can be removed. Problem is, even with the cochlear implant magnet removed, the implant can leave a 2 and half inch shadow. If they are going to do an MRI, they want the best MRI they can get of me and therefore want the implant partially or best all removed. This means major surgery. 

I'm on Carbatrol right now. Makes you pretty sleepy. It seems to be controlling my eye symptoms, but since I took more meds on Sunday and it did not control the facial symptoms I experienced and the teeth clattering, it makes me nervous. I keep getting more symptoms.

Whether I have an AN or not, I'm glad I found you all. I think I made some great new friends here. =)

An or not, I just want to know what it is and treat it. I am in the US in the Rochester/Niagra Falls area.

So, waiting for a diagnosis is a royal pain in the wah-zoo! lol well, gotta laugh! Life goes on.

Wish you all a great week!
Kim