What do you think of all these tests?

[Fluffysmom]

I got a call this morning and was able to see my new oto-neurologist this morning instead of at the end of June.

He was quick; brief history, (took a lot from Dr.Y's notes, yuck), neuro exam 5 min., including the walking up and down out in the hall.  I did get to do a test with this goggle headset on where I got to watch a recording of my eye movements after they had me move my head back and forth, look up and down, side to side, etc.

He took a brief glance at my MRI; said that it was stable.  I gave him a brief explanation of why I wasn't sure if that was so.  He said some stuff that I have questions about, like that if my dizziness problems were from a central issue, there would be changes on the MRI.  A few other things; I'll have to check his chart notes.  He focused on my "earthquake" type sx, and I had to clarify that that is less frequent than my waves of dizziness, loss of balance, etc.

So, he said that he doesn't think my dizziness is caused by my brain lesions, and that he really doesn't know what his causing it.  He suggested a few things, like a variation of Meniere's.  He said "what does a doctor do when they don't have answers?  Order tests!"  

So, on May 29th, I go to Legacy Good Sam Vestibular Lab for the following tests:

Audiogram; standard comprehensive test of hearing.

Acoustic Reflex Studies

ABR (Auditory Brainstem Response)

ECoG (Electrococlhleography) An adjunct test for Meniere's Disease

VEMP (Vestibular Evoked Myogenic Potential Test)

ENG/HP, Subtests include:  Oculomoter/Saccades Pursuit, Positionals, Hallpike, Calorics, Tympanometry.

He said I would be really dizzy for a while.  Luckily, the lab is within easy walking distance of my apartment.

I did take my MRIs in to get a second opinion from a good neuro-radiologist today; I'll send the report to the oto-neurologist if it might be helpful.  I checked with insurance to make sure the second opinion was covered, was told it was, and how to appeal if it wasn't.  My roommate said to get it done; if insurance doesn't pay, she will!  She's as tired as I am of all this waiting and wondering.

So, do you think all these tests are enough?  :o)

Kathy

[Fluffysmom]

It can be a bit of a pain to change glasses; I've had prescription sunglasses as well as regular glasses for years, and got so frustrated I bought some clip-on sunglasses.  They scratched my glasses and were also a pain to clip on.

I think that you could adapt to changing glasses for different tasks; just make sure you keep it straight which are which, lol!

I think I'll look for regular glasses (instead of progressives) and hopefully can find some with the magnetic clip-on sunglasses that are easier to use.  If not, I'll by some more prescription sunglasses.  I couldn't imagine using my progressives ones if I go back to regular lenses; it would feel like a carnival ride each time I changed them.

Kathy

[Fluffysmom]

Pat, I think I forgot to answer your question about whether I'd had a VNG before; no. I don't think my neuro-otologist did any test other that the standard hearing test, and allergy tests.

Nancy, thanks for the clarification on the oto-neuro - neuro-oto thing; my brain just wouldn't bring it into focus today.

I just sent an e-mail to my neuro-ophthalmologist, asking his opinion as to whether I should be seen regarding my nystagmus, and asking for his opinion on the new 3T MRI and how it shows the lesion on my pons that he noted on my 1.5T MRI. I told him how much I would appreciate his opinion.

I also sent an e-mail to my MS specialist regarding the same lesion, reminding her that we didn't discuss it when she called about my MRI results.

I sent an e-mail to my rheumatologist, asking if I should reschedule the follow up with him that I cancelled; if he had any more thoughts on how to find answers, of if he would just go over the negative test results that I already have.  I asked him about my spinal MRIs that I sent him an e-mail about over a week ago (without a response) and whether or not they had any bearing on my quest for answers, in his opinion.

Being in limboland can be a full time job; I still haven't done my dizzy exercises for this morning...

Off to dizzy myself,

Kathy

[6-paq]

Thanks for that clarification!  I'll start with the neurotologist since I already know of one.  :-)   If that shows any indication of CNS causes, then I'll move on.

I think if those glasses don't work, I think I may do what you do ~ have 3 sets of glasses.
That is what someone who is a VRT PT suggested to her patients.  Use of a single lens at the computer or while reading will help prevent neck strain.

Doesn't it get cumbersome changing glasses around though?   Did it take awhile to get used to adjusting to the 2 separate pairs?

[Nancy T]

An oto-neurologist is a neurologist who specializes in dizziness. They look at it "from the brain outward." They are trained as neurologists, then go on to learn specifically about the inner ear and its connections to the brain. If a person needs surgery, they refer them to a neuro-otologist.

A neuro-otologist is an ENT who specializes in dizziness. They look at it "from ear inward." They are trained as ENTs (and thus can perform surgery when needed), then go on to specialize in the inner ear and its connections to the brain. If they suspect neurological causes of dizziness, they refer the person to a neurologist.

Many times a person will see both types (as I did), and sometimes they still can't pin down what's wrong.

I had progressives once (the optometrist thought it would HELP my dizziness). Boy, was she wrong! I really tried hard to wear them for quite a while, but I couldn't SEE with them. I had to turn my head back and forth just to read a column of newspaper type. Forget it!! She had promised that if I didn't like them, I could bring them back and they'd do bifocals at no further charge. The progressives were more expensive to begin with, but I wasn't out much money, and at least I got the answer to the question of whether I'd like progressives!

I use bifocals (when sitting down) when I need to read something and also see something at a distance, such as in a class or at the opera. Otherwise I use single-vision glasses--distance glasses for driving or walking, reading glasses for reading.

Nancy

[6-paq]

OK, I'm still confused between an otoneurologist and neurotologist !!!!   :-P  LOL!!

My mom's doc is an ENT/otologist/neurotologist...  So what does that mean??

At any rate, I figure it's better than the ENT I had before, who totally discounted my abnormal VNG.

Ah, you must be near-sighted then, since reading doesn't bother you (can I say I'm jealous!!).

My ophthalmologist rx'd progressives over a year ago and I tried them for 6 months.  They made me absolutely miserable, dizzy and nauseous.   I could see MUCH better without them.  

I got them while going through VRT and my PT didn't know whether I should do the exercises with/without them.  I ended up doing VRT without them, but I wonder if having the unknown Hyperphoria made a difference?

My new optomologist thinks my problem with the last progressives was that the ophthalmologist didn't catch the Hyperphoria, so he rx'd me a new pair with a prism in the right lens.

Well, if these don't work, I'm out $200.  My insurance plan will cover single lens or bifocals, but not progressives.   I'm already figuring that they won't work based on all the info I've recently read about progressives and dizziness.  

If they don't work, I think I'll have him re-grind them to a singlular lens for distance/walking/driving and order a set of reading/computer glasses.  

Take care and I'll let you know how those glasses work out!
Pat

[6-paq]

Hi all,

I re-read my long post, and probably confused everyone.

Just wanted to say that I am not experiencing double-vision at this point.   When I look at an object in the distance (I'm far-sighteded with an astigmatism and presbyopic) it's not really clear, but I do see one object.  When I shift from looking with just my left eye to just my right eye, the image shifts "up".    It wasn't apparent to me (nor to my previous eye docs) that I have the vertical imbalance.   It is easy to miss, since when sitting and reading an eye chart, it isn't always apparent.   I still have 20-20 distance vision even with the vertical imbalance and the hyperphoria.

With Hyperphoria, apparently it can cause double-vision as well.  I think it may depend on if both eyes shift or ???    

I haven't been able to find anything that can pin-point causes, but I haven't found anything that points to an MS cause either.   Not saying that it isn't MS, but in my limited searches, I haven't found anything yet.   Maybe someone else has info.

Wobby ~ I didn't know that you are wearing prisms in both eyes.  Were they rx'd for your double-vision or was it for some other issue?  

Dizziness is hard to pin down.   It could be caused by many issues like many of the MS symptoms.   So frustrating for those of us in limbo (and for others that are diagnosed).

Take care,
Pat :-)

[Fluffysmom]

That's cool, I enjoyed reading your post!  

I don't remember reading about Hyperphoria before.  I hope the prism works well for you.

I have progressives, and my vestibular PT thinks they are awful for people with dizziness issues; she doesn't even like her own.  Her husband got some, and refused to wear them.  When I bought mine, no one told me that they could cause peripheral distortion.

I even asked my ophthalmologist if they could be causing some of my blurred vision issues, and he said that he didn't think so.

I plan on getting regular glasses soon.  I don't really need bifocals yet; I can see close up quite well, so I can look out beneath my glasses if I need to read fine print.

I saw an ophthalmologist, a neuro-opthalmologist, and three neurologists, none of whom noted nystagmus.  My first visit with my vestibular PT; major nystagmus.  She also said that my right eye points in somewhat.  I often feel like I have to work to focus on things.

However, my very thorough neuro-ophthalmological workup showed a normal exam, no sign of MS, though he did note a lesion on my pons.

My oto-neurologist said that the pons is a center for balance and dizziness issues.

My neurologist didn't discuss that lesion when she called to tell me that my new 3T MRIs are essentially unchanged, though she had said that she had noticed a brightness on both sides of my brainstem and that the 3T MRIs should show us just what they are when I had my last appt. with her.

The difference between a otoneurologist and neurootologist is that the first is a neurologist that specializes in dizziness, and the second is a dizziness doctor that specializes in neurological reasons for dizziness.  Or something like that, :o)

My vestibular PT  asked if I had a prism in my glasses after examining me at length.  I was curious about that.  I'm supposed to make a follow-up appt. with my regular ophthalmologist; I'll ask him about hyperphoria.

I can e-mail my neuro-ophthalmologist and ask if he had done any tests for it; I most likely won't see him again, as the neuro that referred me to him and I are most likely parting ways.  It won't hurt to ask; my insurance and I sure paid him enough for all those tests!  (4 hours one day, then back for a VEP another day).

I'll keep you updated; let me know how the new glasses work out for you, please.

Kathy

[Wobbly]

I too am interesting in what you find out ... this is alot of testing and I've not heard of alot of them.  As you know I have the Vertigo spells, off balance etc... as well, I also like Pat have double vision, where one thing is higher/sideways of the other.. in both my eyes though, but prism don't seem to help with my double vision for some reason?  Maybe because it's in both my eyes??

so let us know how it goes

take care
wobbly
undx

[6-paq]

Oh my gosh, I didn't realize my post was sooooo long.   Sorry!  

Pat

[6-paq]

Hi Kathy,

I'm really interested in your dizziness issues as I think we're about the same age and I have been going through these myself.  I also get the "waves" and off-balance stuff (no double-vision though).  My dizziness in increasing in frequency ~ I now have periods of it every day.

I think that the tests your doc is ordering great!!  Hopefully, they will be able to narrow down what is happening with you.  I'm glad that he's going forward with these.  Did you ever have a VNG/ENG before?  I wasn't sure if you had.   I had one a couple of years ago that showed a significant (77%) peripheral vestibular loss.  My CNS was "normal" at the time.

I just found out my mom's ENT is a neurotolgist.  She has the dizzies too.  After many years of complaints of dizziness (she is 84) she finally found someone to take her seriously and sent her immediately for a VNG.  

She also has a peripheral vestibular loss and went through VRT.   Since my ENT has quit practice, I am going to schedule an appt with him to see if he can further investigate what is going on (my old ENT wasn't interested anyway).   So, I'm interested in what your neurotologist is doing with you and the results of your testing.

I did VRT a year ago, but my dizziness is getting worse.  Neuro isn't looking too hard into it since I had an abnormal VNG showing a problem due to peripheral causes and not CNS (as of that point in time).  My MRIs have all been stable as well and I have no evident lesion on the brainstem.  

One thing I want to ask is if you wear glasses?  If so, are they bifocals or progressives.  I've read several places that vestibular disorders and bifocals/progressives don't mix well.

Another thing I wanted to make note of is that I just recently went to a new optometrist (I know, not an ophthalmologist, but I'm not real happy with mine).   Many of my family members go to him and he is spoken very well of.

Well, one thing that he tested for (and 2 other optometrists and my ophthalmologist NEVER did) was Hyperphoria.  

Well, I've been just diagnosed with Hyperphoria.  The image in my right eye appears "higher" than the image in my left eye, thus creating a vertical imbalance between the two.  

No one ever tested for it before.   Symptoms can include dizziness, headaches (I have constant headaces), muscle tightness, facial "ache".  Apparently, your brain (and body) can compensate for hyperphoria for some time, but then with time (and aging starting around 40 or so) it loses the ability to compensate.

He is now rx'ing new glasses with a prism in my right eye to "level" the images.  The only issue is that he's giving me new progressives, and I've since read that those don't work well with people that have the "dizzies".  If they don't work, he will change them to bifocals or something that does.

Apparently, your brain can compensate for hyperphoria for some time, but then with time it looses the ability to compensate.

I thought that was an interesting finding and I'm really looking forward to see if the new glasses with a prism do help me.   In the very short time he had me look through the prism at the office, I could feel an instant relaxation in my forehead/eyes.  Of course, I didn't walk around, so couldn't tell if it helped with the dizzies.

I also found that interesting that I have the hyperphoria on the same side and my vestibular loss.   Don't know if they're related or if it is a CNS or peripheral issue though.
Like you, my neuro and I are still trying to figure that out.  I'm still un-diagnosed as far as MS is concerned, but it's still on the table.

Just thought that I'd mention my experiences to you.   It's one possibility to look at.  My (supposedly) top-notch ophthalmologist didn't test me for Hyperphoria.  

I'm really happy that your neurotologist is pursing a cause for your dizziness.   And, that wonderful that the lab is close to you!  Please let us know how it goes!!

Take care,
Pat :)

[Fluffysmom]

Hiya!  Yes, he was pretty nice for how quickly he processed me, making jokes and seeing how quickly I got them, enjoying that I laughed at them.

I told him that I don't care what is causing the dizziness, that I just want it to go away, or at least become more manageable, as combined with the fatigue it makes life kind of difficult.

I saw a sadness in his eyes.  I know they might not be able to figure it out or fix it, but I need to at least try.  He strongly encouraged me to continue with my vestibualr physical therapy, saying that's what will help the most.

He asked who sent me to see my particular vestibular PT, and when I told her that it was my neuro, he got this impish grin, looked down, and said "she's learning!"  I loved that; kind of reinforced my belief that my neuro still has a lot to learn.

I need to check on whether I'm going to get a new neuro at OHSU or if I have to look elsewhere.  Last I heard, that manager that was supposed to contact me about their process for their office on transferring from one neuro to another had instead called the Patient Advocate's Office.  

My wonderful helper, Dee, and OHSU gave me the number to call to find out how to register a complaint against my neurologist, the radiologist's that read my MRI report,
Perhaps the head of neuro-radiologist that signed off on the incompleted brain MRI containing many mistakes.

Just a little stress in my life.

Kathy

[Nancy T]

You're getting the full workup! Out of those, I had acoustic reflex and ABR done there, but had had audiogram and ENG earlier at the neurotologist's.

The audiologists at the lab are great. They really know what they're doing, and you have the best specialist to interpret the tests. Hope you find out something about the dizziness (something treatable).

Of course, you know to be prepared for the other possibility: that you WON'T find out what's causing your dizziness (though you might get some things ruled out). That's what happened to me. Sometimes they simply can't tell. I am still dizzy and answer-less after 10 years (or 25, depending on how you count).

Nancy

[Sunnytoday]

Well, even if he just did the quick exam and push you out the door with a script for lots of tests method... it was still a positive meeting, he is going to look into the matter.

hang in there!
~Sunnytoday~