| The ultra sound images appear on computer screen, and Dr. Benes does measurements at various increments. |
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Our
Journey:
Journey:
Avalon's Army of Angels
| January 28, 2009 Dr. Benes |
I love when Bing Crosby, Danny Kaye, Rosemary
Clooney, and Vera-Ellen sing "Snow! Snow!
Snow! Snow!" in my favorite old movie, White
Christmas. I spend the entire movie cheering for
the white stuff. I hold my breath during that final
scene - waiting for the giant stage doors to open
and reveal the heavenly snowfall...
Then I snap back to reality and thank the
Universe I don't live in New England. In fact, I
often thank the Universe for my happy little
corner of the
no-hurricanes-no-earthquakes-rare-tornadoes-ev
en-rarer-blizzards Central Ohio world. I may be
boring, but I like not worrying about Mother
Nature's latest attempt to off myself and my fellow
man. Then every now and then...the rotten old
spinster decides to take a whack at we
Mid-Westerners. Enter...today.
The four corners, the midland, and every square
inch of Ohio in between are currently buried in
the white stuff. No, not a cute little dusting. No,
not a song-producing bevy of beauty. We are
under attack. An all-out assault by crystal. We
have fallen victim to the Almighty Flake...and I
hateth it. Oh, I love looking at it alright. I love
how it sparkles like mountains of glitter in the
sunlight. I love a grinning snowman staring at me
through the kitchen window. I even love the
sight of over-clothed kids waddling their way into
the wintry wonderland. But my love unabashedly
halts at the front door. One step out, and the
affair is over. Move my tuckus to a vehicle, and
the affair has gone more Fatal Attraction than
Love Story. I HATE driving in snow.
Why am I sharing, you ask? Because
oh-so-lucky me had the privilege of driving in
snow today - cataclysmic quantities of it. Joy.
Rapture. Its is to laugh...
Avalon had a neuro-ophthalmology appointment
today. Since Dr. Benes is our single best
resource to gauge what's going on inside that
little damaged head...we don't miss these
appointments, even if the cosmos seem to be
plotting our imminent demise. So onward and
upward we went, through thick of snow and dark
of storm. Onward! I could have taught the postal
service a thing or two about perseverance today.
Once we made it there, the day at least took a
sunny turn. Not so much in actual weather, but
more in disposition. Its hard to hold fast to a
mountain of negativity - when you're being
steadily eroded with winds of kindness. We
walked into the office to huge smiles, and cheery
hellos. Crumwagit...some of my anti-snow fire
melted right out from under me. How did that
happen?
Avalon started her visit by helping Dr. Benes
finish hanging Valentine's decorations. Avalon
loves going to Dr. Benes' office. Its decorated to
reflect her love of the environment and the West,
and feels very cozy and warm. And its always got
the most tasteful, yet delightful seasonal
decorations. Avalon helped them hang the last
few Valentine's hearts and red sparkly
snowflakes. Because she was so smitten with the
snowflakes, Dr. Benes was generous enough to
share the last few with Avalon. She had some
that didn't have a home, so she told Avalon she
knew they'd be happy with her. I'm pretty sure
Avalon's smile melted at least a city block worth
of snow...
The first test of the day was the standard vision
test. Avalon still doesn't know her letters, so we
use pictures instead. Wonders never cease,
she's still holding at 20/20 vision. It astonishes
me every time we do it. With all that she's been
through...she's still got perfect acuity. I'll take my
miracles when I can, thank you.
The big news of the day is what Avalon was able
to do for the very first time. Today was Avalon's
first try at the adult peripheral vision machine -
and she was perfect on it!
Peripheral vision has been the largest casualty of
Avalon's high intracranial pressure. Way back in
the Summer of 2006, when we first discovered
Avalon's high pressure, she had lost nearly 70%
of her peripheral vision. Avalon's Optic Nerve
Fenestration surgery reduced the pressure in the
final few millimeters of her optic nerve and
restored a tremendous amount of her peripheral
field. However, peripheral vision has remained
our most important non-invasive indicator of
what's going on in her brain.
Up until today, all of Avalon's peripheral field
tests have been on a manual machine. With the
manual machine, the operator (Dr. Benes) sits
behind the machine and watches Avalon through
a small hole. Avalon looks into a large white
hemisphere, and focuses on a dot of light in the
center of the back of the hemisphere. The
operator then moves an armature around, which
creates a moving spot of light. Avalon clicks a
small remote whenever the spot of light comes
into her peripheral vision. As Avalon clicks, Dr.
Benes draws dots on a chart that corresponds to
the scope of the machine. If Avalon doesn't click
when expected, Dr. Benes can repeat an area
several times to make sure Avalon really isn't
seeing it. In a similar vein, if Avalon "cheats" by
looking toward the target light, Dr. Benes can see
her - and repeat the test to ensure an accurate
result. For these reasons, the manual machine is
far preferable for a small child. It keeps the
results "honest", rather than polluting data with
mistakes made by a little one.
Today, Dr. Benes asked Avalon if she would try
the big person machine. She told Avalon she
thought Avalon had grown up enough, and was
mature enough to handle the big person one.
Avalon readily agreed. Honestly, I think Dr.
Benes could ask her to jump off a bridge and
she'd say, "OK". Avalon loves her dearly.
The adult machine is probably nearly the same
as one any of you may have done in your
optometrist's office. Its a small white hemisphere,
with a stationary light in the center of the back.
You stare at the light, and click a remote when
you see a flash of light anywhere in your
peripheral vision. The optometry version of the
test is much, MUCH less time than an
ophthalmologist will do to you. Believe me, been
there, done that in both versions. Personally, I
think the thing is inhumane. It gives me a
migraine every time. Anyway, I had my doubts
that Avalon would make for so long, much less
that she could stay focused. As it turns out, Dr.
Bene's adult machine has a computer that tracks
the person's eye - letting the Dr. know if the
patient accidentally "cheated" by looking away
from the center. Believe it or not, Avalon was
absolutely PERFECT in her ability to concentrate
and target! She did better than most of their
adult patients! Gooooo Avalon!!!
We all hooted and hollered and praised her up
and down. Dr. Benes told her she knew Avalon
would be big enough to do it - that's why she
gave her those special snowflakes. Avalon was
so proud of herself, she grinned ear to ear and
back again. Other 5 year olds dance in
competitions. Mine does medical tests like a pro.
How's that for a little reality check? Bleck.
From the adult machine, we headed over to do
ultrasounds on her eyes. The ultrasounds
measure the diameter of Avalon's optic nerves.
High intracranial pressure causes swelling of the
optic nerve, papilledema. Papilledema in adults
is visible by looking directly into the pupil, at the
terminal end of the optic nerve. In children, the
nerve can swell a few mm behind the retina,
making a direct exam worthless. That's why
Avalon was originally misdiagnosed by a lesser
ophthalmologist, and the focus of what Dr. Benes
and I have fought so hard to prove. We have
computer images of Avalon's optic nerve the day
before her ONSF, that look perfectly normal on
the retina. However, ultrasound showed
enormous swelling, and even a bubble forming
on the nerve. Its amazing.
Clooney, and Vera-Ellen sing "Snow! Snow!
Snow! Snow!" in my favorite old movie, White
Christmas. I spend the entire movie cheering for
the white stuff. I hold my breath during that final
scene - waiting for the giant stage doors to open
and reveal the heavenly snowfall...
Then I snap back to reality and thank the
Universe I don't live in New England. In fact, I
often thank the Universe for my happy little
corner of the
no-hurricanes-no-earthquakes-rare-tornadoes-ev
en-rarer-blizzards Central Ohio world. I may be
boring, but I like not worrying about Mother
Nature's latest attempt to off myself and my fellow
man. Then every now and then...the rotten old
spinster decides to take a whack at we
Mid-Westerners. Enter...today.
The four corners, the midland, and every square
inch of Ohio in between are currently buried in
the white stuff. No, not a cute little dusting. No,
not a song-producing bevy of beauty. We are
under attack. An all-out assault by crystal. We
have fallen victim to the Almighty Flake...and I
hateth it. Oh, I love looking at it alright. I love
how it sparkles like mountains of glitter in the
sunlight. I love a grinning snowman staring at me
through the kitchen window. I even love the
sight of over-clothed kids waddling their way into
the wintry wonderland. But my love unabashedly
halts at the front door. One step out, and the
affair is over. Move my tuckus to a vehicle, and
the affair has gone more Fatal Attraction than
Love Story. I HATE driving in snow.
Why am I sharing, you ask? Because
oh-so-lucky me had the privilege of driving in
snow today - cataclysmic quantities of it. Joy.
Rapture. Its is to laugh...
Avalon had a neuro-ophthalmology appointment
today. Since Dr. Benes is our single best
resource to gauge what's going on inside that
little damaged head...we don't miss these
appointments, even if the cosmos seem to be
plotting our imminent demise. So onward and
upward we went, through thick of snow and dark
of storm. Onward! I could have taught the postal
service a thing or two about perseverance today.
Once we made it there, the day at least took a
sunny turn. Not so much in actual weather, but
more in disposition. Its hard to hold fast to a
mountain of negativity - when you're being
steadily eroded with winds of kindness. We
walked into the office to huge smiles, and cheery
hellos. Crumwagit...some of my anti-snow fire
melted right out from under me. How did that
happen?
Avalon started her visit by helping Dr. Benes
finish hanging Valentine's decorations. Avalon
loves going to Dr. Benes' office. Its decorated to
reflect her love of the environment and the West,
and feels very cozy and warm. And its always got
the most tasteful, yet delightful seasonal
decorations. Avalon helped them hang the last
few Valentine's hearts and red sparkly
snowflakes. Because she was so smitten with the
snowflakes, Dr. Benes was generous enough to
share the last few with Avalon. She had some
that didn't have a home, so she told Avalon she
knew they'd be happy with her. I'm pretty sure
Avalon's smile melted at least a city block worth
of snow...
The first test of the day was the standard vision
test. Avalon still doesn't know her letters, so we
use pictures instead. Wonders never cease,
she's still holding at 20/20 vision. It astonishes
me every time we do it. With all that she's been
through...she's still got perfect acuity. I'll take my
miracles when I can, thank you.
The big news of the day is what Avalon was able
to do for the very first time. Today was Avalon's
first try at the adult peripheral vision machine -
and she was perfect on it!
Peripheral vision has been the largest casualty of
Avalon's high intracranial pressure. Way back in
the Summer of 2006, when we first discovered
Avalon's high pressure, she had lost nearly 70%
of her peripheral vision. Avalon's Optic Nerve
Fenestration surgery reduced the pressure in the
final few millimeters of her optic nerve and
restored a tremendous amount of her peripheral
field. However, peripheral vision has remained
our most important non-invasive indicator of
what's going on in her brain.
Up until today, all of Avalon's peripheral field
tests have been on a manual machine. With the
manual machine, the operator (Dr. Benes) sits
behind the machine and watches Avalon through
a small hole. Avalon looks into a large white
hemisphere, and focuses on a dot of light in the
center of the back of the hemisphere. The
operator then moves an armature around, which
creates a moving spot of light. Avalon clicks a
small remote whenever the spot of light comes
into her peripheral vision. As Avalon clicks, Dr.
Benes draws dots on a chart that corresponds to
the scope of the machine. If Avalon doesn't click
when expected, Dr. Benes can repeat an area
several times to make sure Avalon really isn't
seeing it. In a similar vein, if Avalon "cheats" by
looking toward the target light, Dr. Benes can see
her - and repeat the test to ensure an accurate
result. For these reasons, the manual machine is
far preferable for a small child. It keeps the
results "honest", rather than polluting data with
mistakes made by a little one.
Today, Dr. Benes asked Avalon if she would try
the big person machine. She told Avalon she
thought Avalon had grown up enough, and was
mature enough to handle the big person one.
Avalon readily agreed. Honestly, I think Dr.
Benes could ask her to jump off a bridge and
she'd say, "OK". Avalon loves her dearly.
The adult machine is probably nearly the same
as one any of you may have done in your
optometrist's office. Its a small white hemisphere,
with a stationary light in the center of the back.
You stare at the light, and click a remote when
you see a flash of light anywhere in your
peripheral vision. The optometry version of the
test is much, MUCH less time than an
ophthalmologist will do to you. Believe me, been
there, done that in both versions. Personally, I
think the thing is inhumane. It gives me a
migraine every time. Anyway, I had my doubts
that Avalon would make for so long, much less
that she could stay focused. As it turns out, Dr.
Bene's adult machine has a computer that tracks
the person's eye - letting the Dr. know if the
patient accidentally "cheated" by looking away
from the center. Believe it or not, Avalon was
absolutely PERFECT in her ability to concentrate
and target! She did better than most of their
adult patients! Gooooo Avalon!!!
We all hooted and hollered and praised her up
and down. Dr. Benes told her she knew Avalon
would be big enough to do it - that's why she
gave her those special snowflakes. Avalon was
so proud of herself, she grinned ear to ear and
back again. Other 5 year olds dance in
competitions. Mine does medical tests like a pro.
How's that for a little reality check? Bleck.
From the adult machine, we headed over to do
ultrasounds on her eyes. The ultrasounds
measure the diameter of Avalon's optic nerves.
High intracranial pressure causes swelling of the
optic nerve, papilledema. Papilledema in adults
is visible by looking directly into the pupil, at the
terminal end of the optic nerve. In children, the
nerve can swell a few mm behind the retina,
making a direct exam worthless. That's why
Avalon was originally misdiagnosed by a lesser
ophthalmologist, and the focus of what Dr. Benes
and I have fought so hard to prove. We have
computer images of Avalon's optic nerve the day
before her ONSF, that look perfectly normal on
the retina. However, ultrasound showed
enormous swelling, and even a bubble forming
on the nerve. Its amazing.
| After all of my reporting on Dr. Benes visits, we thought you might want to see the machines we keep talking about. Dr. Benes loved the idea - and was very helpful in reminding me what to photograph, and even what angles to take pictures from. She is truly a gem in the medical world. If any of my girls grow up to be doctors, I can only hope they remember Dr. Benes' fierce commitment to her patients, and her dedication to pursuing excellence. She is a woman of the ages. |
| Helping to hang Valentine's decorations |
| Avalon looks into this machine one eye at a time. She stares at a light and has to keep her eye perfectly still and open. The computer maps images of her retina. Its been an incredible tool for mapping damage and recovery from the Intracranial Hypertension (ICH) |
| From this wand... |
| As simple as these tests are compared to others she does...they still have the ability to make my heart hurt. In the grand scheme of things she's still so little. She shouldn't be a pro at tests senior citizens do. |
| Looking for the telephone, horse, hand... |
| Another view of the "Big People" machine. I know it seems silly - but I'm so proud of her! |
| Getting ready to do the eye chart |
| ...to this image. The visit before the ONSF, you could clearly see a large tunnel, with a huge bubble forming on one side. Now, her nerve is so small, its hard to see. Yahooo!! |
| Ultrasounding Avalon's optic nerve, its a kid-friendly test - totally pain free with gooey stuff to boot. |
| The adult peripheral vision machine, the biggest problem we have on all the machines is raising/lowering them and messing with Avalon's stool so she can fit the machine! |
Anyway, after the adult peripheral test, it was time
for the ultrasounds. The Great News is, her optic
nerve diameters are the best they've been in
years. The temporal decompressions are doing
their job beautifully - her pressure appears to be
the lowest its been in years.
Avalon's exam today was a little more in-depth
than normal. Avalon's information is going to be
included in a presentation that Dr. Benes is
making to a neuro-ophthalmology conference in
February. She did some new testing and
measuring today, to bring Avalon's information
fully in line with what she was discussing. As she
began to investigate new areas, she made a few
"Oh my...that's new...that's unexpected..." kind of
comments. I told her she was one of two people
that make me cringe when she does that..so fess
up - what's wrong now? As it turns out, Avalon
was showing definitive signs of Right side Brain
Stem damage. That was news to both of us. She
said she hadn't looked at Avalon's MRI yet, but
that the dropped catheter must have entered in
the R side of the Brain Stem and crossed over to
the left, the damage was concrete. Avalon is also
developing some condition behind her retina that
she said she'd watch closely...but for now, I didn't
press for details. Dr. Benes was deep in thought,
and one new set of bad news was enough for one
day.
From the ultrasound room, we headed to the
manual peripheral field test. Dr. Benes was
adamant about doing both tests, so that we were
sure to compare like to like. After all, all previous
tests had been on the manual - so we needed to
be sure the results were compared correctly.
As it turns out, the results from the manual
machine exactly matched those from the adult
computerized one. Dr. Benes explained why that
was so interesting...and important. The
computerized machine measures only the inner
30 degrees of vision. It measures with a static
light - the test lights don't move, they merely
flash. The manual machine measures only
outside of 30 degrees, and it measures with a
kinetic light - the patient clicks when they see the
light moving in their peripheral field. To have the
two results overlay perfectly is absolute proof of
Avalon's vision loss. Avalon has greatly reduced
(nearly none) right field peripheral vision in
both eyes. R field peripheral loss in BOTH eyes
indicates Left side Brain Stem damage. Nothing
has changed in that regard from our last visit.
The findings match what the MRI shows.
So I suppose the Bad News is that nothing has
improved, while the Worse News is, we found
more damage today. Boggers. Its just so
frustrating at times.
for the ultrasounds. The Great News is, her optic
nerve diameters are the best they've been in
years. The temporal decompressions are doing
their job beautifully - her pressure appears to be
the lowest its been in years.
Avalon's exam today was a little more in-depth
than normal. Avalon's information is going to be
included in a presentation that Dr. Benes is
making to a neuro-ophthalmology conference in
February. She did some new testing and
measuring today, to bring Avalon's information
fully in line with what she was discussing. As she
began to investigate new areas, she made a few
"Oh my...that's new...that's unexpected..." kind of
comments. I told her she was one of two people
that make me cringe when she does that..so fess
up - what's wrong now? As it turns out, Avalon
was showing definitive signs of Right side Brain
Stem damage. That was news to both of us. She
said she hadn't looked at Avalon's MRI yet, but
that the dropped catheter must have entered in
the R side of the Brain Stem and crossed over to
the left, the damage was concrete. Avalon is also
developing some condition behind her retina that
she said she'd watch closely...but for now, I didn't
press for details. Dr. Benes was deep in thought,
and one new set of bad news was enough for one
day.
From the ultrasound room, we headed to the
manual peripheral field test. Dr. Benes was
adamant about doing both tests, so that we were
sure to compare like to like. After all, all previous
tests had been on the manual - so we needed to
be sure the results were compared correctly.
As it turns out, the results from the manual
machine exactly matched those from the adult
computerized one. Dr. Benes explained why that
was so interesting...and important. The
computerized machine measures only the inner
30 degrees of vision. It measures with a static
light - the test lights don't move, they merely
flash. The manual machine measures only
outside of 30 degrees, and it measures with a
kinetic light - the patient clicks when they see the
light moving in their peripheral field. To have the
two results overlay perfectly is absolute proof of
Avalon's vision loss. Avalon has greatly reduced
(nearly none) right field peripheral vision in
both eyes. R field peripheral loss in BOTH eyes
indicates Left side Brain Stem damage. Nothing
has changed in that regard from our last visit.
The findings match what the MRI shows.
So I suppose the Bad News is that nothing has
improved, while the Worse News is, we found
more damage today. Boggers. Its just so
frustrating at times.
I did ask Dr. Benes today if there is any chance
Avalon's brain will be able to work around this
and maybe fix some of the issues. She said the
same thing I've heard from Dr. Kosnik, "I've seen
children's brains do amazing things after
traumatic injury." When I pointed out that
traumatic injury usually involved cerebral injury,
not brain stem...she repeated herself and gave
me "the look". I know the look well, Dr. Kosnik
has given it a lot lately. Its direct translation is,
not likely, but I refuse to rob you of hope. That's
OK, I'll take "the look" - it means they care
enough to care about my feelings. Stealing
hope is heart-crushing.
Thank you, Dr. Benes, for protecting my
heart...and the daughter who lives in it.
Avalon's brain will be able to work around this
and maybe fix some of the issues. She said the
same thing I've heard from Dr. Kosnik, "I've seen
children's brains do amazing things after
traumatic injury." When I pointed out that
traumatic injury usually involved cerebral injury,
not brain stem...she repeated herself and gave
me "the look". I know the look well, Dr. Kosnik
has given it a lot lately. Its direct translation is,
not likely, but I refuse to rob you of hope. That's
OK, I'll take "the look" - it means they care
enough to care about my feelings. Stealing
hope is heart-crushing.
Thank you, Dr. Benes, for protecting my
heart...and the daughter who lives in it.
| Below and left are pictures of the manual peripheral machine I wrote about. This is also the best photo of Dr. Benes we have. We're awful! Next appointment we need to get our beloved Dr. B to smile properly for us. I'm pretty sure we can sweet talk her into it. :-) |
| Here is my cutie patootie, all done and getting ready to head back into Winter Wonderland...or as I like to call it, "Hades Part II - the Below Zero Version". This fireplace is the cornerstone of Dr. Benes' waiting room. Next time, I'll try to remember to photograph more of her office. It really is a warm, inviting place to walk into. |
| ----------------------------------------- |
| Avalon loves retrieving the computer printouts of the readings. She loves getting her own copies of the printouts. She's forever grilling Dr. Benes, "Is this one mine or yours?" Dr. Benes always encourages her. I think she's trying to groom a little neuro-ophthalmologist! |
| The computer screen on the left shows mapping of Avalon's retina. While I admit I've been lax in researching the exact science behind all this - I admit that I have learned to see the comparisons between current and previous scans. In my abundant spare time I really should learn the exact scientific parameters. Then again...maybe I'll save that for my next life. |
