dizzy/lightheaded

[kaykay]

Hello, Ive been lingering for awhile now. alittle history....I had middle foscia (sp) surgery on 10/18/10. my tumor was only 6mm. They removed my balance nerve and my hearing nerve. prior to surgery i just had a day here and there with dizzies...nothing long lasting and my hearing was perfect.
my hospial stay was long..10 days. would have been longer but I was able to get released. I returned to work after 4 months. first part time..and now full time. (for about 3 months)
for the past 2 months...I seem to be going downhill.
Ive been getting dizzies/lightheaded almost everyday....Things seem to get bad at work, and then just carry over to when I get home. if I sit sideways on the couch the room starts to shake back and forth. I have this heavy feeling in my head...and pressure on my surgery site like its ready to pop off. and lets not forget the lightheaded and dizzy feelings...those are horrible.
 Im starting to wonder if I have gotten a sensitivity to the lighting and the really messed up looking carpet here. (believe me, its bad...very "active" looking)
I already had the light removed overhead, but that doesnt help.
I just dont know what to do...I called my doc and they told me to try and wait till my appointment next week.
part of me is starting to freak out. cuz its just not going away. I sit at my desk with my eyes closed...sometimes I go home early and Im driving dizzy all the way home.
I just dont see working the rest of my life like this.
has anyone else had this issue???
I got so panicked last week I filed online for disability. I just want to be normal again.

[kaykay]

i forgot to mention...I also have issues at stores. cant shop at cosco anymore cuz the reflection on the floor affects me....I have to wait for an "ok" day to go to the grocery store and hope i can make it a few aisles before i start getting lightheaded and woozy.
I usually hold on to the cart for dear life. LOL
I really wish I could go back in time and not do the surgery. I had no clue what I was in for. this has completely destroyed my life.

[cin605]

This is common.....The heavy head...pressure..vertigo.
Sensory overload at grocery stores...then turn into panic attacks.
I take lorazepam before the grocery store and it usually gets me through.
Busy carpet is no good...it all spins and blends.
I went to see a pshycologist before i was approved for disability....she showed me a pic of a bunch of busy shapes and colors...she asked me to look at it and pick out shapes....I immediatly went into panic mode...i turned very white and she said..I think we better skip this one.It was a three hour appointment...i had to lay on the couch 45 minutes into it...she was showing me a book of faces and wanted me to remeber them...i looked through the book and had to lay down...she said try to hold the book while you are laying down..I could not do w/o shaking intensly...she also gave me blocks and wanted me to build...she said scrouch down and build...you can guess what happened next....weebles wobble.After an hour and 1/2 she said I have all the info i need you can go.Also i do not know if this was a test or what but i went down the hall to the bathroom and came back and went into wrong office..even though everyone had a different design on the door.
If you are going to apply for disability send them any and all doctors notes..mri...complete report of the surgery...
nobody should have to suffer and be in pain or panic while trying to work.WE pay our whole lifes from the first paycheck we ever work for money is taken out ...exactly for this purpose.Its your money you will get back.
Hang inthere and try to be strong.HUGS!
cindy

[Kaybo]

kaykay-
I, personally, do not have any trouble in stores but I know that many on here do. I'm sorry that you are having so much trouble. Did you say where you had your surgery? Why did you have to stay in the hospital so long - did you have complications?  As we often say on here, after AN surgery, many times you have to get used to a new normal. I had a stroke during my 14 hour surgery so aside from facial paralysis & SSD from the AN, I also had a host of other problems to overcome (relearning walking, writing, speaking, etc) - I tell you that, not for pity but to let you know that it hasn't been all sunshine & rainbows for me BUT I have a great life now!!  I am a little curious why your problems would get so much worse so long after your surgery though...

Can your Drs shed any light on this - what do they say?

K

[kaykay]

oh thank god Im not alone. you have no clue how much that means to me. cuz no one in my family or friends have any idea. I try to explain to them, but there is no way of really telling how it feels, when they havent felt it.
I had my surgery done at Froedert in milwaukee...with Dr. Friedland. I didnt have any complications...but for some reason I couldnt hold any food down...think it was from all the different meds they gave me. I had troubles with getting up and around too....but I seemed to do a lot better when I got home. The hospital setting just seemed to make things worse the longer I stayed there. (plus...I didnt really have good care...was about 4 days before I was offered a sponge bath, and let me tell yah, I smelled to high heaven! when they came in to have me walk, I could just smell the stench going up my nose.........just horrible)
Ive had these problems for awhile....its just getting more intense it seems like the past 2 months.
I do have lorazepam that i was prescribed before they found my tumor. I carry it with me.
I just want to be able to shop again.....or actually sit here and work. I have a desk job...if I cant even do this, how am I suppose to do anything else?? Its just a matter of time before they fire me. I was denied FMLA because it was used up in january.
 I try to remain positive...cuz thats pretty much all i can do. just taking each day at a time.
when i called the doctors office, the nurse said that if needed they will see about putting me back on disability...and to try and hold on till my appointment on the 17th. (i thought it was this friday..but its next friday)  she just has no clue how long that seems.


and if i go on disability...theres a chance I will definietly lose my job since I no longer have job protection...just lovely.

[kaykay]

and a quick question for everyone..........did everyone that had surgery on this site also have their balance nerve removed???
i was trying to compare my symptoms with other posts....but its hard to do when i dont know if they had it removed too.
oh and they said my tumor was actually growing on my hearing nerve...but they said the balance nerve was damaged. I just dont see how that is possible since my tumor was small....and I didnt have major balance issues before.
oh well...not much I can do about that now.

[CHD63]

kaykay .....

So glad you found this forum for some very needed support.  You have had unimaginable difficulties with recovery from your AN surgery.

Do a search on this site for those who have persevered and obtained permanent disabilty benefits.  It sounds like that may be the route you are going to need to go.

Do not know if anyone ever mentioned a couple of things to you.  Many of us have found that caffeine greatly increases the wobblies (or wonkyheadedness as we fondly call it here).  Others have found other triggers that make it worse.  Stress and fatigue are common triggers and it sounds like you are experiencing both of those.  Even some meds can make it worse.  If you have nausea issues from meds, you may have triggers for vertigo, as well.

A little about my situation that may help you.  I have no working vestibular nerves on either side.  Normally with the removal of an AN, your brain adjusts to the missing vestibular nerve and compensates by using the other "good" nerve on the non-AN side.  Unknown to the doctor or me, I had only one working vestibular nerve at the time of my first AN surgery.  When it was removed, I had MAJOR balance problems.  Long story short, I spent months in outpatient and home-program vestibular rehab, learning how to compensate.

To this day, I have a great deal of trouble in all of the situations you described.  Grocery stores (or any store with high aisles like that) are very stressful.  Actually walking down any hallway creates unbalance but especially ones with busy carpets.  Trying to stay upright in a crowd of weaving people is stressful.  Soooooo, I have learned to grab a cart when in stores, stay near to the wall (and lightly touch it as I walk) in hallways, and stay to the outside perimeter when in a crowd.

Although I am a retired teacher, I think I could have returned to teaching, making the modifications necessary.  However, not everyone can go back to work.

It sounds like you may have some other medical issues that are also involved in your recovery.  I would certainly be very careful about driving when you are feeling dizzy.

Many thoughts and prayers that your doctor will have something to offer to relieve your terrible symptoms.

Clarice

PS  Just read your new post.  Sometimes a poorly working vestibular nerve is worse than not working at all.  The brain does not know how to compensate.  Some AN patients have had to have the vestibular nerve totally removed to get relief.  Ask your doctor if it was removed or see if tests can be done to determine if your vestibular nerve is misfiring or non-functional.

[kaykay]

today Im feeling fine. alittle woozy walking to the bathroom...but everything else has gone away.
this sure is a roller coaster! jeez.
and I talked to disablity...thats never going to happen. I have to gross less then 1k a month to file. Figure the day I get fired is the day I will refile....but keeping my fingers crossed that never happens.  I couldnt imagine not working.
just taking each day one at a time...and taking full advantage of my good days!!! think I will try grocery shopping today!!!
woo hoo!!!