So I thought I understood....

[MVD]

So I thought I understood how AN was affecting my life.  I had brief dizzy spells and some vertigo at the onset.   My AN is 6mm and has not grown since diagnosed in December of 2010.  My hearing is 100% but I do suffer from some tinnitus.

I had come to the decision that the current symptoms were better than the treatment alternative.   I decided on watching and waiting.  In the meantime, I was struggling with being a new mom and working in a new job.   My struggles continued as my work performance suffered. I am tired, make silly typographical mistakes, have trouble concentrating, and have an episode (fullness of ear and imbalance) when I am stressed.   I thought these problems were due to my sleep deprivation and the stress of dealing with a new baby, job and AN all in the same year. 

My baby is now 2 and I am getting plenty of sleep.  I am still struggling at work.   I was reading through messages on the discussion board, and saw a posting describing exactly my troubles.  I now believe that my symptoms are also cognitive.  The concentration, attention, typographicall errors are all associated with my AN.   

I do not know what to do or who to turn to.  If my cognitive issues are in fact AN related, I feel like I need to change my career.   My current career requires attention to detail, quick and accurate review of corporate contracts in a fast pace environment where delays and typos are not permitted.  My struggle at work has lowered my confidence and now I second guess everything I write.  I try to re-read things 4 times when possible, because I am in constant fear that I am not seeing something properly or inverting letters.   My boss is starting to think I am sloppy and incompetent.

I have filled my friends and family with worry, and now I am unsure where to turn.   I hope that someone here may be able to relate.  I fear that I need to find a new career that will reduce the cognitive triggers and help me cope with watching and waiting.  At the same time, I want to make sure that I am not overreacting.  Maybe this cognitive symptom will vanish like my vertigo did.  Maybe I am trying to hold on to hope.  I do not know. 

I read a great deal about surgery and radiation, but both treatments cannot assure me that this symptom will go away.  In fact, some may get worse.

Any thoughts are appreciated.

Maria

[Chances3]

Hi Maria,

Welcome to this site.  I'm sure your post will receive a lot of replies.  I hope our community here can collectively come up with some sound advice so you can continue with your career.  Let me relate a little about my story.  The year 2010 began with vertigo attacks.  These were not the simple dizziness ones, but the full spin variety.  You ever watch the game show Wheel of Fortune ?  Imagine lying on that wheel while they spin it.  These attacks of full spins would last 2-3 minutes, although it felt like an eternity.  They became more frequent leading me to an ENT and consequently to surgery.  Unfortunately I still get full spins, but not as frequent.  I too have an extremely demanding job, and there were times when I thought I could never do the work again.  I had your cognitive problems after surgery, they lasted a very long time.  I have read many posts here where members claim it's due to the fact the brain is now working harder with the distractions it has to deal with. 

Here are some suggestions that have helped me.  I hope you like fish, because the omega in fish oil really helps.  I eat a piece of salmon and cod twice a week.  Flaxseed oil really helped me as well which I take another few days a week.  I hope you like spices, yes spicy foods helps the brain. If you're a physical person, I also suggest you try to work out, the endorphins that are released are beneficial to your entire well being.  If you can't jog, try riding a bike or taking a brisk walk. Finally, give your body and brain some rest.  I realize you're a working mom, but if possible try and get a good night's sleep every night and plenty of sleep on the weekends.  If the weekends are hectic, take a nap. 

In reference to your work load, I remember a similar experience years ago where I had so much work with deadlines and my boss got under my skin which added to the angst.  I would bet some of your fall off in performance is because you're getting all hyped up.  Settle down, you know the work, stay positive and it all will work out.

God Bless.

[Bobette]

Hi Maria,

A common saying here on the boards is "individual results may vary."  I was just diagnosed in March and what led me to the doctors was hearing loss in my right ear, fullness and tinnitus.  Two years ago I had vertigo very badly and my doctor thought it was a change in my medication (maybe it was the AN?). 

I started a new job the day after I found out about the AN.  I too have struggled and my attention to detail has not been good.  I go home completely wiped out most days and for the first two months I worried about possibly not passing my probationary period.  One of the things I did in the beginning was to have one of my co-workers do a quick read of my work product before I sent it off when I did not feel confident or felt I was too tired and had possibly missed something. 

You have a lot on your plate -- being a mom and working full time are hard enough on its own, and then add the AN and the stress of worrying about the AN on top of that, yikes!   I agree with Chances - you know you are good at what you do -- yes this is a stressful time and you may not be on your A game, but you deserve to be where you are at.  As I come to peace with this diagnosis I notice that my attention to detail is getting better. 

I have looked at this as a wake-up call for me -- to be more healthy, to enjoy life to the fullest, and to be sincerely thankful to God that I have something that is treatable.  I am getting my rest, eating more healthy, getting outside more, exercising and getting all the information I can to make a good decision regarding treatment.  These boards are so helpful for encouragement and support. 

As far as treatment, even in watch and wait it is helpful to continue to get opinions from other doctors and research all of your options.  Have you attended a local AN support group?  It is wonderful to meet with others that are in the same situation we are.  I have met so many wonderful, vibrant, happy people who have been treated and are living life to the fullest. 

My best to you.

Bobette

[MVD]

Chances, Thank you for your kind words.  I am trying to keep a positive outlook and some perspective.   I recently changed my eating habits to a plant based diet with occasional meat (fish).  It did help clear my mind and I felt a lot better. I encourage others to try it.   

It is nice to hear that others are able to understand how I am feeling. This whole process is very tough and ultimately we are alone making some pretty difficult decisions.  Yes, we have family, friends, doctors, etc., but at the end of the day, it is my head and I have to live with the consequences. 

Thank you for thoughts. -M

[leapyrtwins]

I am by no stretch of the imagination a doctor, or any type of medical professional, but IMO the cognitive issues you are dealing with don't relate to your AN.

You have multiple things on your plate that typically cause stress - just working and having a small child isn't easy - and although I don't know you personally, my take on this is that you are overwhelmed. 

You mention that you have decided to watch and wait, which is certainly an acceptable choice, but are you sure you are really comfortable with watching and waiting?  Is it possible that your treatment decision is causing you more stress than you think? 

Lots of times the things in the back of our minds weigh on us more than we realize.  Sometimes seeing a counselor helps.

I'm an accountant and my job entails having a head for details, figures, etc.  I've seen no cognitive effects from having an AN - either pre or post op - that have compromised my ability to do my job.  However, there are occasions where something (or a lot of things) are on my mind and I tend to make mistakes; lack of sleep and stress can also result in this.

Just my two cents worth,

Jan

[lrobie]

Hi Maria,

I'm sorry that you are going through a rough time right now.  We all feel for you as most of us have been or continue to go through what you are describing.  I'm not sure if we can ever really tell whether these issues are actually from the AN or the stress that your mind and body go through knowing that you have this in your head.  I wouldn't disregard it though as it is something that is measured via the ANA 2007-2008 Survey of people with ANs (memory difficulties, difficulty concentrating).  I am lucky to have a great boss and to have people around me who will help pick up those pieces when I search for that word that's on the tip of my tongue or forget something.  If you work for compassionate people, I would sit down with them and explain what you are going through.

Lisa

[ppearl214]

"individual results may vary"

You all keep "borrowing" my line and plu-eeze type it write.. you forgot the extra "...."  (individual results may vary.....) 

So much going on.... so much to deal with.  Some have noted that pre- and post-treatment, they have seen changes that no one can seem to account.  I had this great piece of suggestion made to me once.  Worked for me... may or may not work for others.  Treat each situation individually.  I noticed handwriting changes post treatment. Go figure on that one!  So, when I hand write, I have had to adapt to it and now, handwrite slower.  I now find I can't read a book or do puzzles like I use to... a "focus" issue.  I try and try my best.  Sometimes it works and sometimes it doesn't.   Just a couple of examples.  I've noted these things to my PCP, to my AN treating team, heck... to my GYN... anyone that will listen (they are tired of listening now).  So, for me.... I desperately try to take a deep breath and then..... in baby steps.... "day by day, inch by inch.... "  (you all can also borrow that one... again, don't forget the "...." at the end )  I recently had 2 majors losses in my life within a week and 1/2, job issues, home issues, etc.  But, again...  "day by day, inch by inch..." in baby steps.

Maria, nothing I have shared here may help... or maybe some will.  Know that, for me, I have found what will help to try to bring me back to earth when the stresses and physical whoas get to me (as many here know, I am multi-physicially challenged... my AN is a hiccup compared to my other issues) and know, that the suggestions noted to you here by many are worth listening and possibly pursuing. Your doctors know you best... and maybe can refer you to other professionals that can help... and our shoulders are pretty strong as well.

Hang tough!
Phyl

[PaulW]

There is a lot of evidence which shows that balance disorders cause a number of problems.
Its not just stress.
 
So many of us talk about "Wonky Head", living in a cloud, or worse symptoms like dizziness and nausea.
Stubbing toes on doorways, walking like a drunk...  increased difficulty walking in the dark especially on uneven ground.
"Shopping Mall Syndrome", When you feel tired or get Wonky Head or dizzy after walking in a crowded mall and turning your head all the time to look in the windows. These problems are caused by compromised balance.

Your hearing and balance nerve are the same nerve, if you have lost part of your hearing, you have probably lost some of your balance nerve too. Most of us have lost some hearing function, most of us have lost some of our balance nerve too.

One of the reasons for these feelings is the vestibulo-occular reflex.

http://en.wikipedia.org/wiki/Vestibulo-ocular_reflex
 
Once your balance nerve is damaged, you will lose part of your vestibulo-ocular reflex.
You can never fully compensate for this loss, just like you can never fully compensate for hearing loss.
The vestibular-ocular reflex, plays a very important role in maintaining our balance.

Medical presentation demonstrating the loss and how to test.. (the first few minutes of the video is the importatnt bit)
http://www.youtube.com/watch?v=6JehOm7NEnI

How to test your vestibulo-ocular reflex with an iPhone at home
http://www.youtube.com/watch?v=6r5UlCVBfx4&feature=fvwrel

Most of us have a balance disorder, whether that be mild or severe.
Most of us will fail this test.


From Wikipedia

http://en.wikipedia.org/wiki/Balance_disorder

"Some reactions to the symptoms are fatigue, depression, and decreased concentration. The symptoms may appear and disappear over short time periods or may last for a longer period.

Cognitive dysfunction (disorientation) may occur with vestibular disorders. Cognitive deficits are not just spatial in nature, but also include non-spatial functions such as object recognition memory. Vestibular dysfunction has been shown to adversely affect processes of attention and increased demands of attention can worsen the postural sway associated with vestibular disorders. Recent MRI studies also show that humans with bilateral vestibular damage undergo atrophy of the hippocampus which correlates with their degree of impairment on spatial memory tasks"


Also from the vestibular disorder website

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

Cognitive
Difficulty concentrating and paying attention; easily distracted
Forgetfulness and short-term memory lapses
Confusion, disorientation, difficulty comprehending directions or instructions
Difficulty following speakers in conversations, meetings, etc., especially when there is background noise or movement
Mental and/or physical fatigue out of proportion to activity

[leapyrtwins]

Jan: "We" don't know if this person's cognitive issue's are caused by the AN or not, we are not her doctor.

    

Kathleen -

I specifically say in my post that I'm not a doctor or a medical professional.

I also specifically say IMO - which means in my opinion. 

Jan

[MVD]

I wanted to update my posting because it may be useful to others.  The cognitive issues I described are related to my balance issues, which are indirectly caused by my AN and now being diagnosed as Meniere's disease.  So if anyone is having episodic vertigo (fullness, tinnitus, dizziness, temporary loss of hearing), you may want to talk to your doctor about Meniere's disease and how to manage it.   

If you are suffering from the cognitive issues I described, do not let your doctors dismiss it.  The vestibular system is an amazing system that incorporates your ears, eyes and brain.  If you have one area damaged (like an AN on your balance nerve), you may suffer from some disorientation, bouncing letters, fatigue, etc. 

I think the biggest challenge that I encountered was calling it "cognitive issues".   Doctors quickly dismiss the idea, because an AN is not impacting the brain.  Once I began talking more about my episodes of imbalance/vertigo, and explaining moments when I get disoriented, lose my way with direction, forget my pin number, and having more "senior moments" than normal, then the doctor was able to talk more about the way the vestibular system works and how these are side effects from damage to the balance nerve. 

I hope this helps folks that are forced to stop working and that are so desperate for a solution that the risks of surgery seem minor compared to the debilitating condition caused by the episodic vertigo.  Although surgery is likely in my future, my surgeon is not willing to perform the surgery if we can manage the dizziness.