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Old 10-14-2007, 02:41 PM   #1
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who diagnosed you with VN initially?

Hey there...

I was wondering who diagnosed you with VN initially when it first happened? Did you have any symptoms of vestibular crap prior to your huge vertigo episode? Why did you go to the University of Penn for a follow up? When the U of Penn told you about your prior eye injury getting in the way of compensation...did they add any specific eye exercise to assist that compensation along? If not, what was their plan for you to get full compensation?

Can I ask if the same docts are there today? Do you believe their findings are what made you get to 100%?

Do you suggest going to a optometrist or opthomologist for eye evaluation?

I remember PRIOR to vn my eye would nystygmus left to right when I was tired...I shared this with my PT and he said that this could have been the start of the vestibular stuff. I asked him if it could get in the way of my compensation...and he said no.

What do you think?

Thanks so much for everything.

 
Old 10-15-2007, 04:56 AM   #2
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Talking Re: Subs...another question when you have the time!!

Hi Charlotte

..."who diagnosed you with VN initially when it first happened?"....

Neurologist that the ENT sent me to.

...."Did you have any symptoms of vestibular crap prior to your huge vertigo episode?".....

No---nothing!

"....Why did you go to the University of Penn for a follow up?".....

Got hung up at month 9.

"....U of Penn told you about your prior eye injury getting in the way of compensation...did they add any specific eye exercise to assist that compensation along?"....

No nothing special regular vision VRT's

"....If not, what was their plan for you to get full compensation?"....

Time & stay extremely active.

"....the same docts are there today?"...

Yep.

"....Do you believe their findings are what made you get to 100%?"...

Yes---they were clear---that it was a Highest Probable Dx(i.e., guess)---and if their Dx was true---the way to 100%---was VRT's and activity...

"....suggest going to a optometrist or opthomologist for eye evaluation?"....

I did---(Neuro-Ophthalmologist)---it was a part of the Univ of Penn work up>

".....could get in the way of my compensation...and he said no....What do you think?"....

No---not likely.

1st Doc I saw was Primary Care Doc

---she said Prob "LAB's" ordered MRI & Referred to ENT.(3 days into prob)

2nd Doc Was ENT

---did VENG & Audiogram---he said "LAB's" & Referred to Neurologist---since the VENG showed a "Dead Right Labyrinth"(2 wks into prob)

3rd Doc was Neurologist

---he said---"VN" with some type of visual prob superimposed on brain & sent me back to ENT who prescribed VRT's.(8 wks into prob)

4th Doc's(it was a team-took 2 days) Univ of Penn

---said---it did not make much difference at that time(9 months into prob) if it was Labs or VN---to start---they Dx'd prob "VN w/BPPV"---with the "Pre existing Vision" problem---hindering full(100%) compensation--said continue vision VRT's and stay active...time would take care of it---how much they did not know....(know way of knowing)...13/14 month---it was gone---that was about 6 yrs ago!


 
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Old 10-15-2007, 05:59 AM   #3
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Re: Subs...another question when you have the time!!

Thanks for really detailing that for me.

I have let my current doctor know that I might be looking into other docts just as a follow up. I think I am on the right path...just want to be sure. My PT doesn't always fill me with confidence (hah).

Did you have problems in crowds or in stores? If so, could you detail what they were?

Also, I know in the past you said you had trouble sleeping? How long did that go for, and how did you cope with that?

 
Old 10-15-2007, 10:39 AM   #4
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Talking Re: Subs...another question when you have the time!!

Hi Charlotte

"....Did you have problems in crowds".........

No

".....or in stores?".....
Yep.

".....If so, could you detail what they were?".....

Going down the aisle(s)---peripheral vision of both eyes---was not balanced---so one side would see a slightly different peripheral view then the other---that resulted in---the brain thinking your were turning(left or right) when u were really going straight---bummer!!

".....in the past you said you had trouble sleeping?"......

Yep.

"....How long did that go for, and how did you cope with that?".....

About two years---entered a period were---I would just be up most nights---until---finally "Crashed"----then up most nights again---then crash,etc....----was glad when that was over----no problems now!


 
Old 10-15-2007, 02:44 PM   #5
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Re: Subs...another question when you have the time!!

I seem to be having the same type of sleeping issues...ahh well. 2years...yeah, I bet you are glad it is over!

Hey, can I ask how stores would make you feel when you were in them? Did you feel spacey, detached...off in the head...woozy like? Or what did you feel if anything?

Thanks for taking the time, honestly...I know you are a busy fella...

 
Old 10-15-2007, 03:06 PM   #6
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Talking Re: Subs...another question when you have the time!!

Hi Charlotte


"....you feel spacey, detached...off in the head...woozy like?".....

Yes---but it was just the brain trying to do(Multi-Tasking Issues)too many things at one time...balance, talk, look, etc....the Brain(ur's/mine) is not really that good at multi-tasking on most things----some it can get by with----when their similar---but not good at multi-tasking on/with----dissimilar tasks.....as I got closer to 100% compensation---the brain was not trying/required to multi-task as often---since balance started to go into "Automatic" again....so those feeling subsided.


 
Old 10-16-2007, 05:33 AM   #7
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Re: Subs...another question when you have the time!!

Thanks again subs.

Hey, so were your symptoms elevated in bad lighting situations?

Did you notice symptoms at night or in the dark?

My symptoms have moved from really whirry/feeling like my eyes are jumping around tons...to more of shimmering feeling...Does that make sense?

More of an overwhelming sense of movement/whirryness...to more of a subtle sense of motion?

Does this sound familiar to you?

I know you said over time your symptoms just faded away. Can I ask if you knew when it happened, or if by that time...you forgot what "normal" felt like?

Can you do things like spin, twirl, dance now? I know that sounds nuts...but I so want to dance again...and right now it still ramps me up a bit.

Do you ever get blips with your eyes anymore?

Did you have that jumpy feeling with your eyes even up till 100%?

Thanks again, you are the best.

 
Old 10-16-2007, 07:43 AM   #8
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Talking Re: Subs...another question when you have the time!!

Hi Charlotte

...."Hey, so were your symptoms elevated in bad lighting situations?"...

No.

...."Did you notice symptoms at night or in the dark?"....

Not really.

...."My symptoms have moved from really whirry/feeling like my eyes are jumping around tons...to more of shimmering feeling...Does that make sense?"...

Sort of---in that vision is(usually) the last to go.

....."Does this sound familiar to you?".....

Until ur brain get back to automatically keeping your balance---that kind of feeling---will continue----but when ur at 100%---that feeling will go....

...."you said over time your symptoms just faded away."....

True.

....."Can I ask if you knew when it happened, or if by that time...you forgot what "normal" felt like?".....

Never for got what "normal" felt like---but---one day it was---just not there---anymore....

....."Can you do things like spin, twirl, dance now?".....

No limitations---what so ever---that I can tell.....

....."Do you ever get blips with your eyes anymore?".....

Nope.

...."Did you have that jumpy feeling with your eyes even up till 100%?"....

Don't think I ever had a "jumpy" feeling---at 100% all vision probs were gone.


 
Old 10-16-2007, 10:46 AM   #9
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Re: Subs...another question when you have the time!!

Quote:
Hi Charlotte

"....Did you have problems in crowds".........

No

".....or in stores?".....
Yep
This question caught my eye. I hadn't seen any post with Subs mentioning sensory overload symtpoms. Good question!


Quote:
Hey, can I ask how stores would make you feel when you were in them? Did you feel spacey, detached...off in the head...woozy like?
I couldn't have explained this any better. This is exactly how my head feels when going into stores. I'd like to add a squashed or heavy headed feeling with those symptoms.

I am starting biofeedback and the doctor who is helping me says he has another patient with similar symptoms of overload problems when going into stores. He says she is getting better with treatment and says he has some tips for me on how to handle this. I will post if I find out anything good and if it seems to help me. I go for my first official session this Friday.



Hi Subs. This is a good thread Charlette started. I know some of the question are probably repetative, but one more question; was your dizziness true vertigo or did you start off with a true vertigo episode or was it all just the woozy, off, spacey junk for you from start to finish? Seems like a lot of people have this one time burst of true vertigo and then become dizzy and then for others just off from the start with no true vertigo episodes.

Also, one last question. Since I am heading to Philadelphia on a regular basis and I have all my records together for the TRT doctor there; I'm considering a second opinion (well really a 10th opinion if you count all the clueless doctors I've seen). I was wondering if you can give me the name of the official department you where seen in? I'm really wondering about my eyes being the culprit holding me back.

Last edited by gloria2936; 10-16-2007 at 10:58 AM.

 
Old 10-16-2007, 12:21 PM   #10
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Talking Re: Subs...another question when you have the time!!

Hi Gloria

...."wondering if you can give me the name of the official department you where seen in?".....

The Balance Center Univ of Penn
Hospital of the University of Pennsylvania
Department of Otorhinolaryngology: Head and Neck Surgery
Five Silverstein
3400 Spruce Street
Philadelphia, PA 19104

Their web page is:

[url]http://pennhealth.com/ent/balance/[/url]

...."was your dizziness true vertigo or did you start off with a true vertigo episode or was it all just the woozy, off, spacey junk for you from start to finish?"....

Yes it was true vertigo happened multiple times---1st time---when I awoke---numerous times during the first 72 hour period---and then numerous times through out the period till 100% about the 13/14th month---then only once in the 24th month(couple spins)---about the 9th month Scott discovered the MEP and from that point on---used it---to get rid of the vertigo---or---to determine if I still had any(do it once a day then once a week then once..etc..)

Gloria you also commented on:

....."".....or in stores?".....

Yep

This question caught my eye. I hadn't seen any post with Subs mentioning sensory overload symtpoms. Good question!"....

...."".....If so, could you detail what they were?".....

Going down the aisle(s)---peripheral vision of both eyes---was not balanced---so one side would see a slightly different peripheral view then the other---that resulted in---the brain thinking your were turning(left or right) when u were really going straight---bummer!!

So yes---I had trouble in stores going down the aisles---due to Peripheral vision not being in balance---this is not unusual---with this junk....


Last edited by Subs30; 10-16-2007 at 12:22 PM.

 
Old 10-16-2007, 01:19 PM   #11
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Re: Subs...another question when you have the time!!

Thanks for the information Subs. I am going to schedule an appointment once I get started on the TRT.

Have a good night.....Gloria

 
Old 11-11-2007, 08:30 AM   #12
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Re: who diagnosed you with VN initially?

Hi Subs,

Just a quick question for you. Do you recommend any specific doctor at the University of Penn's Balance Center?

Also, someone had mentioned the Hospital is in a rough neighborhood. Do you know of any hotels that are very close to the hospital? (I suppose when I make the appointment with them they can probably assist me, but thought a second opinion would be wise as I will be traveling alone.)

My appointment with the Philadelphia Tinnitus and Sound Sensitivity Center went extremely well so I thought down the line I could set up an appointment for a second opinion with the Balance Center there. I trust my neurologist's diagnosis but want another opinion for sanity. I believe the care I received prior to my current neurologist was useless as I think the specialist I saw were all ignorant and unexperienced with these dizzy conditions.

Thanks for the adivice,
Gloria

 
Old 11-11-2007, 10:17 AM   #13
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charlotte67 HB User
Re: who diagnosed you with VN initially?

Gloria...funny, I just e-mailed them the other day. I am thinking of going too...they seem to be a bit better than the guy in Boston.

 
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