Looking for a new job...

[MaryCPereira]

Okay, so I was diagnosed in February and I've been doing relatively OK, except for the ear pain and what not that I posted about before. Also, quick background, I take 911 calls for a living.
So, for the past couple of weeks or so, I have noticed that I have been making mistakes at work. Mistakes in other places might not be a huge deal, but in my line of work it can literally be life or death. I have been there for 4 years, and am very very good at my job. One of the best in the state, according to scores and what not. Anyway...these mistakes...it's like I'm suddenly dyslexic or something. I don't understand it. I am suddenly giving incorrect addresses, like, 14 instead of 41...or making other mistakes like that....I give the wrong age, forget to relay certain information.
Well, it was really stressing me out, so I decided to talk to my boss about it. I was sorta expecting to be assigned a seat closer to the supervisors so they can keep an eye on me or whatever, but that isn't what happened. My boss said I can't go back on the phones, and that he is going to try to find me another job in the state. I can NOT afford to lose the state employee benefits, esp with getting 2 MRIs a year, and eventually surgery. So,  he's actually being really good about trying to help me find something else. It will probably be a pay cut, but I'll take what I can get.

I have been looking for another job anyway, and am hopefully going back to school this fall as well. However, I did NOT want to go out this way. Makes me feel like a failure or dangerous or something...I don't know...And most importantly, it's really scary knowing that I'm making these mistakes and having NO control over them or reason behind them.. Another non work example is that I was at the doctors the other day getting some lab work done, and there was a sign..I read, "please have your car insurance with you"....I thought that was strange, and re read it...it actually said "please have your insurance card with you."   How does my brain get that messed up?!

When I was posting the other night about the ear pain I read a post about "directional confusion", and wonder if this could be all related..

I spoke with a nurse who grew up in a deaf household, and she was explaining that when the brain loses an ability it sorta rewires to try to compensate for that loss...so she thinks that maybe my brain is just in that rewiring phase and it's screwing with some other stuff, and that it'll all get better once it's adjusted... However, the doctor was aiming for 5 years in the watch and wait, until I lose my hearing completely because there is no hope of keeping any hearing after surgery. I just don't know if I want to "adjust" for the next 5+ years...

Also, my doctor is pretty text book...I know I shoudl be calling him right now, and I will..but I don't want him to tell me it can't be related or that it is impossible or whatever, because that makes me feel like it's all in my head and it most definitely isn't.

Sorry for the vent...if anyone else has ever had anything like this happen, it would be great to hear about, at least then I could mention it to the doc...

Hope you're all doing well.

[alabamajane]

Mary,
Just replied to your post about ear pain, so will not go into that here as I ranted alot!!
But ,, again if you are not satisfied with this Dr that you "dread" calling,, find another one quickly,, one that hopefully you can talk to and he will not feel like you are imagining these symptoms,, because you are not.

So sorry to hear about it affecting your very important job,, but was brave of you to discuss it with your boss knowing how important it is for you to get it right! I am praying he will be able to find you a job that will be satisfying to you..

I would also say that the stress you have been under since diagnosis most probably would be affecting all sorts of "functions",, I did not experience what you have described to any great extent, but I am retired,, so not as involved with public etc. as I was for 30 yrs.. but I would imagine, and I am not a Dr as is pretty evident from my other rant,,,,,, I would imagine it is related to the stress your brain is under..
I hope you can find some other answers from other posters soon and maybe a Dr that will listen to your symptoms more compassionately..... praying for you some comfort and relief.. Jane

[jaylogs]

Hi Mary! No need to be sorry about venting, that's part of what this forum is for!!  I know after I was diagnosed, things seemed "off" for me...concentration, all that.  So I totally get on how you are feeling. Unfortunately, like you said, your job is the kind that doesn't forgive mistakes.  I think that you will find more people, as they chime in, feeling or have felt the same way.  I do hope you can get in on something that can use your talents AND still be able to pay the bills!   Keep us informed on how it goes, ok? In other words, keep venting! Take care!
Jay

[MDemisay]

Mary,

You are indeed a rare bird these days! It takes guts to do the right thing sometimes! Thank you for putting the public welfare above your own. You did the right thing! Bravo! Work with your supervisor, I'm sure he'll be able to find something for you. If anything, he should be able to appreciate your coming to him first and you should receive an award for that within and among your coworkers. You are very brave!! PM me sometime!

Mike

PS Remember the big flap all those years ago about the air traffic controllers? Public safety jobs such as yours, should never be taken lightly, thanks for stepping up!

[MaryCPereira]

Thank you all for responding....I appreciate it!

I can't sleep tonight, so I decided to do research. I decided to just google adult onset of dyslexia...just to see if it was possible, and if so, a possible cause. I was actually trying to come up with something other than the tumor, because the nurse told me yesterday that it isn't possible that they are connected.

The first site that came up mentioned that there are some studies that show dyslexia to be connected to something called cerebral vestibular dysfunction....or...inner ear problems.  My mind was blown!  So, I've spent the last hour researching it. No one seems to have linked it to ANs...but, you can't get much more inner ear than that, can you? There is an interesting study about it, and I plan on printing it out and bringing it to my next doctors appointment. And if he won't listen to me, I plan on bringing it and me to every single doctor that will see me until one of them listens to me and tries to figure it all out.
A lot of the research links it to brain injuries, or that sorta thing..but, I think there's a strong possibility it could be connected.

Maybe I'm wrong, and if so, that's fine. Won't be the first or last time for that! But all that I know right now is that there is definitely something weird going on that has never happened to me before...and I want some answers! On a mission! I'm afraid though, that if it is connected, it'll be like my hearing and be a permanent thing...as opposed to just "rewiring" like I was hoping.. We will see, and I'll be sure to keep you all  updated!

[MaryCPereira]

Oh, also, there is research that "glue ear" is linked to dyslexia in children. That's something to do with ear infections and blockages and what not. I'll make sure to bring that up to the doc too.

[It is what it is]

I tremendously respect your honesty in sharing about mistakes at work, after being one of the top people in your line of work in the state.  There are not many more stressful jobs than yours. Congratulations for pursuing information through research to help answer your question about why this is happening to you, especially since you've been unable to find an answer in any other way.  I wish good things for you in this process.

Karen

[Lori101]

Mary,
You didn't mention if you'd had an audiogram.  What side do you wear your headset on?  You could have some hearing loss and not realize it.  Especially since there tends to be a decrease in word recognition with an AN that's out of proportion to hearing loss.

I was also working in a 911 centre when I first noticed symptoms - balance issues, fullness in my left ear and difficulty hearing with my left ear on the phone (my audiogram was completely normal - so wasn't diagnosed with an AN for another 5 years).  I had to switch my headset to my right ear and then everything was fine.  I could still hear what was going on in the room with my left ear, it was only telephones that gave me trouble.  Oddly, after close to a year, I was able to use the left ear with the phone again.

Lorraine 

[PamJ]

Hi Mary I worked for the Police as a civilian for 22 years in the UK until I had my tumour removed. One reason I left was I was approaching retirement age although I could have stayed on but once I had the op and returned to work I found I was typing different things to what I actually heard.  This became a real problem for me.  The strange thing was if I read my work back about 10 minutes after I'd typed it I could see I'd typed it wrong (if you know what I mean).  It's about 17 months since I had the op and 4 months since I retired and things have improved so i would say it is all related to the tumour and the op.

[LizAN]

Mary,

If something called "cerebral vestibular dysfunction" can cause dyslexia in adults, then of course your problem is related to the tumor.  These things usually grow on the vestibular nerve.

I've been having similar trouble and didn't make the connection, so, thank you for the enlightenment.  At six weeks post-op, I'm in the thick of brain re-wiring, but the problems started before surgery and I was diagnosed with nystagmus the day before the surgery.  I was mis-reading things for quite some time and had no idea why.  I thought it was just stress.

I'm sorry you are having to leave the job you love.  Kudos to you for talking with your boss before you made any costly mistakes.  I know it's hard on you to be moved out, but it could have been so much worse had you not taken action.  Maybe after your brain has fully compensated, you'd be allowed to go back, assuming you haven't found something you love even more?

What's your treatment plan?  Are you in watch and wait?

I hope you find a doctor you love and trust.  There are some fantastic ones out there.  I have been very happy with House Clinic.

Liz

[MaryCPereira]

I recently did find a doctor that I really like. Although, he too is very skeptical that my transpositional issues are tumor related. He instead thinks it may be migraine related and it getting me in to see neuro-psych and neurology.

As soon as I mention the doctors name that is the big advocate for inner ear/dyslexia problems, the doctors smirk. It seems as though they all know of him, and don't believe in him. I am not saying he's a good doctor, or better, or anythign...he might be terrible, and he might be WAY off. However, I think about all of the big discoveries that people have made throughout time.... the world being round, the solar system, cancer treatments, etc...all of those things....I am sure that one person had the idea first, and that people all discounted them for being crazy. And now look at where we are. So, who knows. All that I know is that I have a brain tumor, in my inner ear, and I am now basically dyslexic. And there is a guy out there saying it's connected. Maybe it is, maybe it isn't.

I dont' care either way, I just want it fixed! I'm hoping maybe it's just re-wiring or whatever from the hearing loss issues (both ears are both "normal" - but my right side is bad normal, and my left is great normal), but either way, it'd be nice to read normally again!!

[PaulW]

Hi Mary,
You are not going mad and I believe your problems are AN related.
I had very similar problems.

http://vestibular.org/understanding-vestibular-disorder/symptoms

There are two reasons why reading becomes more difficult.
1. The general confusion one gets when your vestibular system is not right.
2. The vestibular occular reflex.
This little known reflex means your eyes cannot keep a constant gaze when your head is moved.
One of your "Gyroscopes" in your head is broken.
When you breath, or your heart pumps the VOR adjusts your eyes.
Now you must do it manually and your brain has to think about it.

This presentation is rather technical but helps explain what is going on..
http://www.youtube.com/watch?v=6JehOm7NEnI

I hope you can see how any movement of your head will make it more difficult to read if you have a vestibular deficit.

I had a number of problems with typing and concentration.
I got my words jumbled a lot. Jumbling words is now a thing of the past fortunately

[MaryCPereira]

Paul,

Thank you so much for that link. I'm at work now, but will watch the video tonight. Those symptoms make so much sense. Now if I could just get my doctors to read those and believe them!  I have printed it off and highlighted the symptoms that I seem to be having...and I have an appointment with a neurologist tomorrow, so I will bring it with me then.

I'm wondering if taking the tumor out would stop these problems. I have read that other people have had less pain and what not after the removal, so I'm wondering if it could also stop these reading issues that I'm having. The downside to surgery right now is not only losing all of my hearing (right now my hearing is pretty good in my AN side..), but also the facial nerve would be compromised. They want to wait until it gets bigger and do a translab approach to preserve my facial nerve as much as possible. They described my tumor as being in a difficult location, and very tough to get to. Also, if they take it out before it gets bigger, they won't guarantee that they will successfully remove all of it.

But, I'd like to read normally again!

[PaulW]

Eventually your body does get used to a damaged balance system and lack of VOR on one side
That processs takes time, like many months. I am sure your reading will become more normal again by itself.

I am sure if the doctors performed the Head Impulse Test (As seen on the video) they would discover that you have a deficit, and therefore your reading problems. As ANers nearly all of us have this deficit.


You will need to be patient. Vestibular exercises may help. Walking I found helped me a lot to retrain my brain
All that brain training does make you tired though. It does get better and your body does get used to it, but the deficit is typically permanant.

All Acoustic Neuromas are in a difficult spot, and are difficult to remove.
If your tumour is small, its worth checking out radiation too, not just surgery.

During surgery they will typically cut the balance nerve, this apparently helps reduce vertigo and other balance problems in the longer term. Your VOR is lost forever on one side.

I have no doubt that you will be able to read normally again, but the adjustment process takes time.

[alabamajane]

Hi Mary,
You say you have found another doctor you like better,, good for you! Was wondering if you have sought second opinions from any other drs.? You are able to send MRi and any auditory testing to any of several drs.  For "free" phone consults and advice,,, very helpful,, I sent mine to House clinic in LA, CAL. And got some very helpful advice with no obligation to go out to them for treatment,,,, just a thought,,
Reason I mention this is your last post about location of tumor, size and dr. Wanting to wait 5 years before doing anything due to "certain" hearing loss and possible facial nerve involvement ,,,,,location is just as important if not more so than just size alone ,, and translab does give dr best view of facial nerve,, however, that does not guarantee no damage to facial neve. Translab does destroy hearing totally, however, if tumor is small enough now,,you may have other options. I am NOT a dr but did have translab lat Oct and lost hearing and facial nerve due to location and tumor had wrapped around facial nerve,,, perhaps if I had not waited three yrs for treatment,,it MAY not have been same results,,,
Just wanted to give my "two cents" concerning second opinions as getting more than one dr opinion can be very helpful,,,at the very least you know if they agree on treatment options! Good luck and take my unsolicited advice as just a postie chiming in!!  Jane