anyone else or just me?

[ernie h]

i'm 1 month shy of 2 yrs post op of my r/side an surgery.balance and (wonky head) still major issues.i've had a lot of vestibular therapy with minimal improvement.i also recently failed my vemp test on my (good side).indicating my saccule function on that side is non-existant.my question is the only way i can get any relief from this (wonky head) is being horizontal.even if i sitting it's stil bad.anyone else feel this.thanks to all ernie h.p/s if it matters my surgery was trans lab and i lost my right side hearing 2-3wks following surgery.i also have a lot of confusion in driving even going to places i've been hundreds of times.i also bump into and trip on things i know are there.

[cin605]

I am w/ you the only time i feel semi norm is laying on my back.I hate public places.I drop everything n forget what i am doing from minute to minute.If i am getting laundry out n the phone rings laundry stays half out of washer till i happen to walk by.
if i go out n drive anywhere even if its a 20 minute trip i am exausted when i get back.
I have been doing vestub rehab for 8 months.

[moe]

Hi Ernie,
Sorry to hear about the balance/wonky headedness.
I'm 3 years post op, had translab, and still do have those symptoms, probably not as bad as you though.
I took a 3 hour horizontal nap today, and a 2 hour horizontal nap yesterday. It felt sooooo good, and I'm so tired because of the mental energy it takes to get through the day with the hearing loss/tinnitus/facial issues.
I work part time doing RN  home health visits, had to work last weekend. It's amazing how my body needs those nice naps this weekend.
Anyway, I also have a GPS which is a Godsend, if you can afford one.
It must be unbelievably frustrating to get lost going to places you've been.
Walking they say one of the best things you can do for balance issues. Also yoga (Yes, men can do yoga!)
So I try to walk, rest daily,( horizontally),do balance/yoga exercises (which I haven't been doing lately),
 and just try to keep up with everything with some sense of  humor -hahahah, not funny for us I know.
BTW what is a VEMP test???
Hang tough,
Maureen

[ernie h]

thanks cin605 and moe for your responses.naps are definetly a big part of my life as well.trouble is i find they don't help much like they used to.i try to keep them short less than 45 minutes.ektra long ones seem to make me worse normal i guess.i have a lot of trouble because i lie down a lot not only to nap but to lessen that horrible feeling.and then my body gets stiff from lack of movement catch 22 i suppose.the vemp test (vestibular evoked myogenic potential) say that three times fast.they put electrodes on your forehead and neck and induce sounds through your ear to measure the saccule signal(one portion of your vestibular system) that relays info to the brain.and of course when you have a trans labrinthectomy that and all of the vest functions are removed in that side.and they discovered (after much complaining on my part) that the saccule on my ( good side) is non-existant.when the ear surgeon saw the results he was stunned.he said now i see why you feel that way.the only treatment is balance therapy.every time i see him he says it (will) get better i pray he's right.god bless you for being able to work as you do moe. i went from a 34 yr self employed auto technician to dis-ability.my best to all of you ernie. p/s i do walk (almost) everday about 3 miles.havent tried yoga yet.

[moe]

Ernie,
I wonder what caused you to fail the "vemp" test? There's no correlation with your AN removal on the other side, is there?
That is just NOT FAIR.  Basically you have no balance mechanism? or a small amount?
It is great that you are walking 3 miles a day.
The WII fit is a hokey kind of game, but I have it, and the balance games are fun. It also has yoga.
A lot of forumites have it. (that is what I have not been doing)>
Can any medicine be prescribed to help with your symptoms without zoning you out?
Hang in there- trudge along as I say
That's the best we can do......
Maureen

[ernie h]

hi moe.i suspect my vemp signal was a problem before surgery on my (good side).they told me that it was checked prior to my surgery and it was weak.they told me this after it failed completely.they don't have an answer why it failed.they said (the ear surgeon) there are no med's that will help.i do have wii fit.and i guess i lied before because i have done some yoga with it.you know what's interesting.i can actually do quite well oh the balance games except for some of the one legged ones.guess those are the one's i need more practice on.my major complaint or symptom if you will is this wonky garbled fussy head feeling.i know my balance is compromised.but it doesn't seem to hinder me terribly.(most of the time.it's this drunken head feeling i just can't seem to lose.no it's not fair but a lot of things in life aren't as we all well know.wishing you well.thanks for your interest ernie h.

[moe]

Yes Ernie,
The
wonky garbled fussy head feeling---I know it!
The drunken head feeling-that too!
That's why I need my horizontal naps daily. They help tremendously.
I find I do better in the late afternoon/eve with an afternoon short nap.
So life goes on. Trudge on!
Maureen

[LADavid]

Ernie
I know the feeling well.  But stay tuned.  I'm going into an experimental study program on Monday for post AN balance issues.  Hopefully there are some answers and solutions here.
David

[moe]

OK LADavid,
Let us know how it goes.
Good hearing from you. How was jury duty??
Maureen

[cin605]

i don't think he can talk about it.

[wcrimi]

I'd be curious to know why the good side was weak to begin with. I would also have thought that the doctors would have been very interested in that and even brought it up prior to surgery if they thought there was any risk of further loss. Information like that could be relevent to deciding which treatment option you wanted.

Not even a theory as to why you lost it completely?

I know full well the exact feeling you are describing. I am lucky in that I can escape it either sitting down or lying down most of the time, but as soon as I stand it's "wonk city".  The faster the motion, the greater the intensity of the feeling.  It's like a mixture of a having a few drinks, having just woken up, jumped out of bed and not being clear headed yet, being wobby, and being slightly disoriented. It's also worse for me after an intense day of work, spending too much time on the computer, or when I didn't get enough sleep the night before.

I also know about the bumping into things, tripping, spilling things, knocking things over etc...  I was never clumsy before, but I am now.  The strange part is that usually these things are IN MY FIELD OF VISION and it's NOT that I am losing balance. I think it's usually just that the wonkiness makes me slightly disoriented and it causes me to misjudge distance  ever so slightly or not notice these things.

I am a little over 8 months post-op and don't have a problem with the other side. I am improving with time and now have days that feel close enough to normal (though not nearly there yet) that I can cope without getting frustrated, angry, down etc... It also helps when you seen slight signs of improvement every couple of months because it keeps my hope alive that I will eventually feel normal. But I've had some very bad days and still do from time to time. I know what that's like. I know my sympathy isn't going to make it better for you, but perhaps a few prayers will help and you never know what new treatment is just around the corner. 




   

[wcrimi]

Ernie
I know the feeling well.  But stay tuned.  I'm going into an experimental study program on Monday for post AN balance issues.  Hopefully there are some answers and solutions here.
David

Please make a point of keeping us up to date on this. 

[ernie h]

wcrimi my thoughts exactly.if i had been told i would feel differently.when i told them that of course they had no good response.and unfortunately i don't think there's much to up-date on.they told me the only thing that could help were balance excersises.

[tenai98]

Our brain robs from Peter (brain) to pay Paul ( balance)
Thank goodness for the GPS...once I couldnt remember which way to turn at aT intersection to go home...Another time before surgery I knew where I was going but didnt know where I was. Thought I took a wrong turn or missed my turn....so weird how the brain works
JO