new sympton and question for posties

[tenai98]

Another new sympton in the last two weeks...Can you say DIZZY!!! Ok, I know its to due with my balance issues...I stagger, I stumble, I jumble up my words, short term memory, disorientation and back and neck pain...not to mention being fatigue...This dizziness comes many times a day from mild to moderate I guess...it doesnt make me nauseated, more like I had one to many (for someone who doesnt drink except maybe a glass of wine 2-3 times a yr). Just one glass of wine can make my heard swirl...So my question to the posties...does the symptons disappear after surgery/radiation?? Or do they remain at the level of pre op?? Or worse??   Surgery is a month from today.
JO

[anissa]

Good questions, I am experiencing all of the same, looking forward to answers.   

[Keeping Up]

I am not a postie - so I hope you don't mind if I chime in.

I have been very dizzy the past few days - I have fallen twice getting up out of bed, darn near fell off the toilet, leaning over the babe's crib makes the world spin, and walking around the office has made me feel like a drunken sailor.  I have a glass of wine, and I might as well have drank the entire bottle.

I have been, up until now, asymptomatic with this AN other than hearing loss and tinnitus.  Earlier this week, I had a moment of panic that crap this thing was going to take a turn and create serious balance issues.

Two of my team have also complained of being dizzy - neither, obviously have ANs.  One, just start heart meds (not quite sure why ... no reason to ask) - he called his doctor because he couldn't walk around his house and was fearing he was having a heart attack.  The doctor said not likely, and the meds shouldn't cause it - give it a few days, to see if the virus passes (inner ear imbalance).  It worked.

I am now day 4 or 5 of dizzy issues - I have much less vertigo (or at least the world spins less) and the imbalance when I leapt out of bed mid-night to tend a crying baby is less spinny and just weird.  I didn't hit the floor this morning.

So ... while the postie question is great - if you are having temporary balance issues much beyond your norm, it may be a well circulated Ontario virus (I think you are in Ontario). 

However, I think, as I understand - you move into the 'wonky head' category post-surgery.

I am hedging on my virus bet as I am truly hoping to stay asymptomatic for a very very long time.  This dizzy crap is truly inconvenient!

Ann

[yardtick]

Well Ladies, I'm a postie and yesterday was a HORRIBLE day for me!!!  The dizziness at times has made me very, very nauseous.  The fatigue is another HUGE battle for me all the time.   

Jo, I cannot drink at all.  I will have ONE glass of wine maybe once a month if that.  I drink ice cold water like it is going out of style.  I guess partly because my mouth is always dry and in general my mouth taste like poop!!     

[wendysig]

Hi Jo,

This all sounds pretty normal for an ANer.  I jumbled words, or just plain couldn't manage to get the right ones out.  I knew what I wanted to say, but the words just weren't there.  I'm not sure if it's stress or cognitive.  Whichever it was, it got better post-op.  I'd always been really good typist before, but not anymore.  I'd hoped that would return to normal too, but no such luck.  As for dizzyness, that got increasingly worse and was aittle worse after surgery, but still managable.  I did use a cane the first few weeks.  Once I stopped, I realized I probably could have given it up a couple of weeks earlier, if I'd really tried.  Hang in there Jo, it's not long now.

Wendy

[EJTampa]

Hey JO.  I'm a brand new postie, so probably can't answer your question as well as others.  About a year before diagnosis, I had a 3 day bout of vertigo.  I'd be driving down the road and things just seemed to be swirling in my head.  Too bad it didn't last longer than 3 days, maybe I would have found out about this AN sooner.
 
I never did have significant balance issues after that, and testing revealed that most of my balance nerve was still working well.  Now post-surgery, I find turning my head sends me flying off a cliff! .  I have noticed rapid improvement in the last 4 days when I walk, but still trouble turning my head side to side or looking up and down.

In short, I can say that based on the improvement I'm seeing now, I expect to recover fully.  I didn't have balance issues pre-surgery, but my doctor told me that a mis-firing balance nerve is never a good thing.  That's why the always remove the nerve when they go in.  I think, after surgery, when your balance nerve is removed, your other side will then begin to compensate fully.  And as everyone says many times over, I'm not a doctor, don't play one on TV, and didn't sleep at a holiday inn express last night .
 
Ernie

[tenai98]

Great to hear you are doing well Ernie.  I'm enjoying my time in Florida before returning home for the surgery.  I have already lost my balance of the left side.  So my right has compensated, but its the lingering but not overbearing balance issues I'm dealing with...As it is, I had to give up my job of teaching kids how to drive with my hearing loss.  Having the student look at me to speak and me to look at them to hear is not conducive to staying out of crashes...lol...But I can still do my in class portion. So that is a bonus.
Keep up the good work Ernie...
JO

[Jim Scott]

JO ~

I experienced fairly significant disequilibrium prior to my surgery (but no neck pain).  Most of that disappeared after the operation, although I did have to put some effort into regaining my sense of balance, which is fine, now, although not what it was a few years ago, before the AN manifested itself.  I would venture a guess (that's all it really is - I'm not a doctor) that the majority of this dizziness and the other symptoms you describe will abate after the surgery, although perhaps not immediately as there is usually a period of adjustment involved in the recuperation, but it shouldn't take too long.  Because I know Anissa is reading this, I have to add the usual caveat that we're all unique and despite many similarities, for better or worse, no two AN post-op/radiation patients have the exact same recovery experience.  I can only suggest that because the AN is causing these symptoms, most of them will disappear or drastically subside after the tumor has been addressed.  I certainly hope and will pray for that to be the case.

Jim

[Sue Vogel]

Hi Jo, I know you may read this a lot, but everyone is different.  There are, though, similarities and knowing that there are others who share your experiences can be somewhat comforting. 

I had dizziness for four years before my diagnosis.  It was mild and manageable until two weeks before my surgery.  Even though my balance was trying to compensate before surgery, the post surgery balance issues were much worse for me.  I still struggle with walking a straight line, darkness, and large open places with high ceilings.  For most of us who face microsurgery, the brain will suppress the function of the balance nerve on the good side when it senses that the balance nerve on the tumor side has been removed.  The two sides normally work in tandem with each other.  So after surgery, initially you rely on your visual perception and proprioceptors (pressure sensors like in the ankels, hips, feet, etc.) for your balance.  The brain has to relearn to keep you balanced with the two remaining systems until it releases its hold on the balance nerve on the good side.  This happens over time and with exercise.  Balance recovery is definitely possible, but it does not happen over night.  And again, everyone is different.

You may have read on the AN site where many report they have more problems when they are tired or have pushed themselves too hard.  This seems to be a common thread.  You will also read many, many success stories and tales of improvements.  I will admit that I have had some rough times with balance since I returned to work.  I hit the 5 months-out mark on Friday, the 13th, and observe that I have seen noticeable improvement in my balance in the past two weeks.  I also have a lot more energy and am finally able to survive a 5 day work week.  On days when the balance is off and the head has spasms, I just remind myself that "This, too, shall pass."  And it will.
Keep us posted on how you are doing, and stay positive.

SUE

[Pembo]

Another new sympton in the last two weeks...Can you say DIZZY!!! Ok, I know its to due with my balance issues...I stagger, I stumble, I jumble up my words, short term memory, disorientation and back and neck pain...not to mention being fatigue...This dizziness comes many times a day from mild to moderate I guess...it doesnt make me nauseated, more like I had one to many (for someone who doesnt drink except maybe a glass of wine 2-3 times a yr). Just one glass of wine can make my heard swirl...So my question to the posties...does the symptons disappear after surgery/radiation?? Or do they remain at the level of pre op?? Or worse??   Surgery is a month from today.
JO

I am an almost 5 year postie...my dizziness ENDED on surgery day. The balance talk a few weeks to even out but it was SO much better than pre-op. I did jumble words and have memory problems but those got better too. The fatigue after surgery was from the anesthesia not from being so dizzy and the nausea was gone. I could EAT anything after surgery.  For me neck and shoulder pain have been a constant. I've never had to take anything stronger than Advil and regular massage and a good pt have helped tremendously.

I also remember the doc saying that the more pronounced your dizziness before surgery the quicker the brain compensates after surgery. Stay strong, these last weeks before surgery were the toughest for me.....we're here for you.