ANA Discussion Forum
General Category => AN Issues => Topic started by: MaryCPereira on July 25, 2012, 10:06:12 am
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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.
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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
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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
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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!
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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!
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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.
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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
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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
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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.
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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
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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!!
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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
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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!
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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.
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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
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Hi, I agree with Jane about seeking second opinions. I had a small tumor and I still had hearing on the AN side. I decided to have surgery while my tumor was small because I didn't want to lose my hearing if there was an option to save it. I was given a 70% chance of retaining my hearing. With the middle fossa surgery using HEI surgeons, my hearing was saved. The tumor had grown into my facial nerve and I am thankful I hadn't waited any longer. They were able to remove most of it, leaving a very small amount in order to not damage my facial nerve. I'm not a specialist in this area so I can't know what would be the best choice of surgery for anyone else, but I thought I'd share my story. I am very very glad I had this particular surgery and grateful to have my hearing.
I wish good things for you,
karen
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I also agree with having second and third opinions if possible. The first 2 Dr.s that I went to told me that because of the location of my tumor, surgery would cause total hearing loss 99% of the time. I had lost 25% of my hearing already, even though my tumor was very small, because of where it was located (as far outward in the IAC as possible)and was told that as it grew it would continue to take my hearing. The first 2 Dr.s didn't want to do surgery...I sent my MRI to House in LA and they gave me a 75% chance of retaining the hearing that I had. For me it was a no-brainer...wait and watch and let it grow and take my hearing...or have a 75% chance of keeping what hearing I have. I went with the 75% chance. And they were successful. I know that is not always the case, but it was worth my efforts to send them the MRI.
In my opinion, and it is just that, my opinon, the Dr.s at House are the best!! I mean they specialize in AN's...
BTW, I had Mid-Fossa last December and am doing great now. I can still talk on the phone with my "bad" ear... :)...I do have tinnitus...not uncommon...and I am still recovering, but it takes time. I guess what I am trying to say is that I am very glad I got second and third opinions and if you can, you should.
One more thing, I have noticed that I do mix words up more often than I did in the past and my wife kids me about having dyslexia, but I am not sure if it is AN related or just my getting older. If I were a betting man, I would say it is AN related.
Good Luck!!!
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Thank you all for the imput! It's very much appreciated. I think I will definitely send my scans to House, and see what they say. My AN is pretty much right near my cochlea, down low under the facial nerve I guess. The 2nd opinon doctor drew it out for me.
The only reason I've been willing to wait is because they told me that if I don't, not only will I lose my hearing, but probably the facial nerve as well. But, thinking that I could loose my facial nerve anyway doesn't make me happy. If I can find someone that will take it out, and maybe keep some of my hearing, that might be the best thing for me. Who knows at this point. It's still so new I guess.
Also, I went to the neurology yesterday with that website printed off that Paul sent to me. (Thank you again for that!)
She also refused to think it's connected to the AN at all. She said that it's because I get migraines, and because I've had a headache every day for over a year. I'm used to the headaches by now...they don't even both me. And I've had migraines for as long as I can remember. But, they never had any cognitive effect on me before, so why would they now? She looked at the list...for about 10 seconds, if that...and said that that list is like watching a commercial for a medication and hearing a list of all possible side effects. And that was it, she moved on.
She wants me to go on anti depressants to get rid of the headache. That's what the first neurolgist tried...they didnt' help. So, this doctor is putting me on a different one...Effexor. Which, from my understanding, is the stronger version of Cymbalta. I am extremely allergic to Cymbalta. Also, I'm not depressed. I have some anxiety, but nothing that impacts my life... I'm frustrated.
She suggested anti seizure meds...but then said that it would cause birth defects if I wanted babies..I've been trying to get pregnant for 2 years.
She suggested blood pressure meds...but my blood pressure is already too low, and it would make me pass out...
She suggested phenergan for the nausea with the migraines, which I'm allergic to too.
I left there so annoyed! About the list --- If you were put on a new medication that listed possible side effects...say it said it could cause suicidal thoughts or manic behavior...and you've NEVER been manic or suicidal before...and then all of a sudden you are...wouldn't you attribute that to the meds?! If that is the case...and there is a list of vestibular disorder symptoms, and it's slowly becoming a checklist for me...and I've never had these problems before...how is it not connected?! AHH!! I want to rip my hair out!
Sorry.. venting again! Even when I tell her that others have experienced similar symptoms with ANs...she says mine is too small. Well....according to the other doctors, mine should be too small to alter my balance and hearing this much, but the tests don't lie, and neither do I.
Ugh, I'm just going to stop here... I'm getting too angry when I type. And I'm at work - dont' want to break the keyboard with my typing!! ;-)
Thank you all again! Hope you're having a good day...or, as I call them now... a good tumor day!
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Hi Mary,
Time to look for different opinions I would say.
Might be worth hearing about my experience.
About 2 years before I was diagnosed, I could not concentrate the way I used to and I was getting tired easily.
I had the usual blood tests and nothing was found. I thought I was just getting old.
Then my hearing started declining. It seemed like everyday my hearing would be a little bit worse.
From Vestibular testing I had lost 50% of my vestibular function on my AN side.
Typing became difficult, I transposed letters jumbled words, and wrote jibberish.
I also had problems speaking, my memory wasn't right. Words that I wanted just didnt come out.
I am self employed, just as well, I probably would have sacked myself on poor performance.
All of this stuff was happenning at the same time the AN was reducing my hearing, affecting my balance, and giving me tinnitus.
I was diagnosed with an AN and treated with Cyberknife 3 weeks later.
As my AN symptoms slowly disappeared 12-24 months after treatment, so have the typing problems, speech problems. Energy levels and concentration have also improved a huge amount. My symptoms are now gone and I feel back to normal.
The small AN's can be some of the most problematic.
This happens because as the AN grows it begins to fill the Internal Auditory Canal.
As it grows, it will squash your facial balance and hearing nerve into a ribbon instead of being round, and it will squash the artery that feeds the cochlear restricting blood supply to both the nerve and cochlear itself... The tumor itself can also affect the nerve directly... Hmmm I think that makes us very good candidates for Vestibular problems!
Many a doctor has been confused by the amount of symptoms we get, the long recovery, yet there is little or no damage to the brain itself, both before and after treatment.
About 6 months ago we had a Professor Margie Sharpe attend our local support group meeting.
An expert in the field of balance disorders
http://dizzinessbalancedisorders.com.au/
I don't think there is much in the world of balance and dizziness that she does not know.
As she talked I was ticking lots of boxes with my symptoms, as were so many others in the room.
Lets face it our vestibular systems are broken, so we will get vestibular problems.
None of the symptoms you are describing would surprise her.
As for the drugs, wow I would definitely seek more opinions..
As an alternative, I found Ginger Root Extract which is a natural motion sickness remedy helped me.
Dont expect anything fantastic, but it did seem to do something at the maximum recommended dose.
I have recently seen Ashwaghanda another herb prescribed by a doctor, work very well for anxiety in a family member, and allowed them to stay off the prescription medication.
2 Years ago I thought herbs provided marginal at best, medicinal qualities, I have changed my tune, especially to see Ashwaghanda work so well for anxiety
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Today my bosses took me aside and told me I have three weeks to find another job or I'm fired. I don't even know what to do at this point. I was told when I was taken out of my old job that they would find me something permanent here, and I have been applying to places. I really need to stay employed through the state because of the insurance, but I don't think thats really an option at this point.
I might only have insurance for another month or two...I'm actually considering trying to get someone to operate now, while I don't have to pay for it...rather than wait the who knows how many years and then maybe drown in debt... Is that crazy? To consider getting it out now, before I have to?
I am so lost right now... I've been here for 4 years, and I've been a great employee...and now this. I know I sound whiney, but it really isn't fair. They go out on a limb for other employees, who just can't cut it at the job...and yet, I have a brain tumor, and they cut me out.
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Mary ~
You're definitely getting a raw deal from your employer and have every right to be distressed over the situation. Having the surgery now is a huge decision that only you can make but sometimes financial stresses will determine our choices and there is nothing 'crazy' about that. You'll be in my prayers that you can find the right answer to this vexing problem confronting you.
Jim
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Any time your let go or can`t work because of ailment I would think your eligabe for Social Security Disability. I know we would rather work but thats why its there for us. May also be able to work part time up to a certain amount. Just an idea which may be helpful. Best wishes, Mickey
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Today my bosses took me aside and told me I have three weeks to find another job or I'm fired. I don't even know what to do at this point.
There's a lot more to your situation than just medical.
1 - Check out the ADA website:
http://www.ada.gov/
Study, study, study as much about your ADA rights as you are studying about ANs.
2 - Consult an attorney who specializes in ADA and age discrimination employment cases. DO IT NOW. Otherwise you very likely will find yourself out of work shortly and in a world of hurt.
3 - As for your insurance, COBRA allows you to continue it unchanged for 18 months but you have to pay the full premium. Study your COBRA rights at:
http://www.dol.gov/dol/topic/health-plans/cobra.htm