NOAH AOC

Andrew's Daddy here...

A couple of questions for those that have seen Dr Hertle (or anybody else for that matter.)

Jill created a thread about the latest opinions we have received regarding Andrew's nystagmus as it relates to his vision.  The backstory on that is that I actively sought the opinion of an optometrist regarding the possibility of fitting Andrew with a special type of contact lens.  This doctor was extremely informative and will definitely be a valuable asset to us for second opinions.  She practices about 2 hours away from us so is not trying to "steal" a client from our current professionals.  She did tell me that she has sent several patients (although none with albinism) to Dr Hertle for evaluations/surgery for nystagmus.

She said that a "waveform recording" will be most beneficial to assess Andrew's vision potential as it relates to the nstagmus.  Can anybody explain what we can expect from this test?  Also, I would like to hear how many different professionals perform this test.  I believe that there is an optometrist not far from where we live that does it but am wondering if we should just wait to see Dr Hertle. 

She also suggested an ERG. We had been told at Childrens Hospital of Philadelphia (CHOP) that an ERG won't give any useful information as there is no difference between the ERG of a patient with albinism and one with normal pigmentation.  Has anybody gained useful information from this test (or any others?)

We keep trying to put the pieces of the puzzle together and the doctors keep changing the picture on the box.

--MARC

Well, Marc, in my TOTALLY unqualified opinion, the test will probably record the rate and range of movement. I guess by knowing the rate and range of movement, your doctor can better diagnose the nystagmus. This site has some information about waveform testing: http://www.dizziness-and-balance.com/practice/nystagmus/saccadic-nystagmus.htm

For what it's worth, our daughter is seeing one of the best eye doctors in our area, and she hasn't suggested a wave form test for her. I guess it depends on the situation, but the doctor has never mentioned it, and we have never thought to ask about one.

I hope this helps, but clearly you are more qualified to talk about eye matters than I am.

-DadInKS 

hello, Dr Dell'Osso is the one who developed the Tenotomy and the eye recording machine used by Dr hertle and another Dr in Ohio, here is the link to his research lab, you can find a lot of information there

http://www.omlab.org/OMLAB_page/OMLAB.html

if you'd like to talk and ask questions to Dr Dell'Osso ,you can join the ANN yahoo group.

Hope this help

this one specificlly addressed the relation between Nystagmus and acuity

http://www.omlab.org/OMLAB_page/Teaching/OMLAB%20Pat%20Info/INS%20and%20acuity.html

Wow--that last link makes perfect sense!!  It explains perfectly why the 'look' of your nystagmus, what others see from the outside, really has nothing to do with how well you see!  And the part about the brain disregarding all of the information except that which is gained during the foveation period explains why we don't see shaky images, and also why we don't see all of the details--we don't see an image long enough sometimes to take in all of the details!

I notice the link also mentions that the waveforms can be used to predict acuity in infants with  no other eye condition, which I interpret to mean those with nystagmus only, and not those who also have albinism and another condition.  Is this how it read to you?

Thanks so much for the link!

Joni 

Joni, you're welcome

"I notice the link also mentions that the waveforms can be used to predict acuity in infants with  no other eye condition, which I interpret to mean those with nystagmus only, and not those who also have albinism and another condition. "

I would say yes, many people with Nystagmus ONLY tend to have better vision, for people and Kids with albinism, Nystagmus contributes just to part of the low vision, and there are other factor as well, the underdeveloped fovea, transillumination, strabizmum (sp) ect.so that's why even after the surgery, people with albinism still don't have perfect vision.

Which is exactly the same reason why glasses and contacts do not fully correct the vision of persons with albinism--they can only correct refractive errors, if they are present.

Joni

Joni,speak of glassess and refractive errors, I found this old post is extramely interesting, just wondering if anyone have any experience about that. I am wondering if Brian is still visiting this board, if so, could you give us an update about your new research? thank you.

http://community.albinism.org/forums/p/5872/28828.aspx#28828

I'm not sure if Brian is around as much as he used to be, but he is fabulous!  I met him early on through NOAH and we conversed at the Atlanta and Minneapolis conferences.  Brian, are you still here?  Have you learned anything new lately?  Hope you are well!

HELLO--

MY DAUGHTER KENNEDY, WHO IS FOUR NOW HAD THE 'WAVEFORM RECORDING" WITH DR. HERTLE WHEN SHE WAS THREE.  WHAT IT IS AN APPARATUS WITH SPECIAL GOGGLES OR GLASSES THAT RECORDED HOW FAST HER NYSTAGMUS WAS.  SHE HAD TO WEAR THESE GOGGLES FOR ABOUT 10 MIN WHILE SHE WATCHED CARTOON CHARACTER BEING FLASHED ON THE SCREEN.  THEY RECORDED EACH EYE INDIVIDUALLY AND THEN GAVE US A "READING" OF HOW FAST EACH EYE WAS MOVING.  IT WAS SIMILAR TO AN EKG OF THE HEART BUT INSTEAD IT WAS THE EYE.   DR HERTLE SAID THAT THESE RECORDINGS HELP HIM WITH THE EYE MUSCLE SURGERY TO SEE WHAT MUSCLES HE NEEDS TO MOVE AND TO WHAT POSITION WHEN HE REATTACHES IT. 

KENNEDY HAS HAD THE TEST DONE TWICE.  ONCE FOR THE INITIAL BASELINE, THEN AGAIN PRIOR TO HER SURGERY SINE IT HAD BEEN ALMOST A YEAR.  IT ALSO SHOWED THAT HER NYSTAGMUS WAS GETTING FASTER WITH THE SECOND RECORDING WHICH HELP IN OUR DECISION MAKING PROCESS PERTAINING TO SURGERY OR NOT.  SHE WILL HAVR ANOTHER RECORDING IN JULY TO SEE HOW WELL THE SURGERY HELPED...

IT WAS BASICALLY A VERY EASY TEST ONCE SHE GOT USED TO LOOKING THROUGH THE GOGGLES.  WE TOLD HER THEY WERE SPECIAL SUNGLASSES AND THAT HELPED.