About a week ago I noticed my
right lens in my new glasses didn't seem to be doing as well as when I
first got them about two weeks earlier. At first I thought my right
lens may be dirty and cleaned my glasses. But it still wasn't right?
Next I held one hand over my "bad" eye and my GOOD eye had a kidney shaped,
dark smoke-like spot on the left of that eye. I covered the
right eye and found I could see better with my (bad) left eye?
I decided I must have strained
it or maybe I had a cold in it or something. All day I kept checking
my right eye in hopes it would straighten up. The next day it seemed
worse and I really was scared.
I made an appointment with my
Optometrist for the following day. Since I had just been checked
and had new glasses a few weeks ago, my doctor was concerned also.
After being examined she said I was to go home and first thing in the morning
make an appointment with a Retina Specialist. However, the next morning
I was told by primary doctor (we have an HMO) that I first had to see an
Opthalmologist. After a day or so I went in for an exam. She
said she did not find what the Optometrist found but made an appointment
for me to see a Retina Specialist in a week!
Since I was the one with the
kidney shaped blind spot taking up half my vision in my good eye......I
said, "I want to see a Specialist today! I was told this
was not possible. I begin to cry and left. My husband, however
stayed and was very upset when he came out to the car. Instead of
going home he took me back to the first doctor. My Optometrist but she
was not in.
He ask the receptionist to please have her call me.
After a very short time she
called me stating that she knew the Specialist and had called him. Instead
of another week to wait for an appointment I was now able to get in after
only a two day wait. By now my vision was even worse!
I spent those two days looking
up Macular Degeneration as that had been mentioned to me.
But everything I found on this
disease said it starts in the center of the eye. Mine was not in
the center. This worried me even more.
Finally I was examined by the
Specialist. He photographed my eye and after a short wait we were
shown on a monitor my kidney shaped blind spot. I was informed it
was a rupture of some kind and it had gotten even bigger since I first
noticed it.
I ask the doctor to mail me a copy of the diagnosis and this is what it said..
On exam, visual acuity is 20/80 OD and 20/30 OS. Slit lamp exam reveals moderate nuclear sclerotic lens change without significant interval change from the exam two years ago. Funduscopic exam of the right eye reveals an area of subretinal fluid superotemporal to rfixation, OD. There was no associated bleeding or exudate but definite subretinal fluid accumulation was found to be present. Scattered drusen were present within the posterior pole as well. Examination of the left eye reveals no evidence of fluid leakage, hemorrhage, or exudate. Scattered drusen were present centrally.
A fluorescein angiogram was undertaken which demonstrates a well- defined subretinal neovascular complex supertemporal to fixation in the right eye. The neovascular membrane appears to be extrafoveal in location.
I was then given a Laser photocoagulation to my right eye. and told to come back in one week to reassess my posterior setgment status.
I was told the retina is damaged and the
surgery could not improve damage to the retina.
I'm devastated still.
I am waiting out the week to find out if the leaking has been sealed off.
It's Friday and my appointment
is Monday.
I cannot imagine having this
terrible vision and not being able to get it fixed. I have always
done detailed type things. Now I surely could not do that as well
as before. I know I should be grateful it isn't worse but it's hard
to be grateful right now. My left eye has always been bad and I was
always confident my right eye would make up for it.
As I type this it looks like
I'm looking through a porthole under water. That's with my glasses
on and using both eyes. When I cover my left eye. The kidney
shape is more oval now but it's still there and the rest of the vision
in that eye is a big blur.
I'm determined to find ways
to still do what I love to do. How? I don't know but I can't
imagine not doing close work. Everything I love is usually detailed
close work. I would have gladly given up an arm or even a leg....
not my sight.
1. I'm feeling quite bitter about our HMO. I feel if I could have gone straight to the Retina Specialist the way my Optometrist wanted me to do, I would not have lost so much vision.
2. I'm hoping someone
will read this that has Macular Degeneration wherein leakage of fluid
like mine. Maybe they could let me know how they manage and can give
me some tips.
So far I find that magnifying
things only makes the wavy, blurry vision bigger, not clearer.
3. I wish I could tell
you that I did something wrong and that's why this happened. But
the Specialist said it did not happen because of anything I did.
It is due to age. I'm 62. I found out my mother had this but
she lived to 92 and did not have really poor vision until she was in her
80's. I sure thought I had longer to enjoy the vision I had.
I'm pretty down in the mouth....
I was trying to grow old gracefully. But as I type this I feel angry.
I feel like kicking, screaming, crying. I want to yell, "this isn't
fair!" Getting old should not mean we deteriorate so rapidly.
It shouldn't mean we are robbed of our strength, memory, mobility and most
of all........ our sight!
UPDATE: On the next appointment, the Doctor put the dye in my arm and again photographed my eye. He told me later that it looks like the leakage has been sealed and if it stays that way I should slowly regain the sight I had before the leaking began. He added that it may take two weeks or two months before the sight returns. I asked him why my sight had gotten so much worse since the laser treatment. He told me it was due to the eye being swollen.
I found it interesting that he likened the situation to a brush fire. He said,"I can put out the fire but I cannot control the embers that may or may not flare up. Nor can I prevent this from happening again."
ANOTHER UPDATE (2/7/98)
Well it's now about 2 1/2 months later. A lot has happened since my last update.
The Specialist gave me an appointment for 3 weeks while he took his vacation.
However, only one week passed and I could tell something was wrong again. My bad eye
(the right eye with the "Wet" type MD)with the potato-shaped, black blind spot now had
a lot of things going on. When I looked at a light with just that eye it showed
the black potato shape but all around it was blood red!
I quickly called and was seen by a different Specialist. After she did the dye/photos
she informed me that my retina was flooded with blood and added that there
was nothing that could be done about it. She explained that there were lots of
aids for people with low vision and central blindness. I left in tears as
this was only a short few weeks since I first was told I even had MD.
I kept the original appointment that I had with my doctor then and after he did the usual dye-in-the-arm and photos, he said,"I'm not giving up on that eye yet!" He lasered the latest leak and give me a one-week appointment.
This happened every week. until last week..this being 2/1/98. The doctor did have the dye/photo done and when we viewed the photos on the monitor, as we always did together..he explained that there was no new leak that we could see but explained that each time he lasers the blood vessel that leaked and didn't belong there...usually will seep. This time it had once again flooded the retina with blood.
My vision in that eye is really bad. He told me with the center blind, I was now legally blind in the right eye. He stated we will continue to try and save the periphral and added that when all the blood is absorbed we still could get some vision back as well. That is ONLY if no more vessels appear and leak.
I must tell you again..if I've mentioned this before.. that legally blind does not mean we see black only. It means our central vision is gone. Our central vision is where we see detail..
Right now if I close the good eye and look across the room..Almost the whole wall is gone..grayed out or black..depending on the light. That is with my prescribed glasses on.
If I close the good eye with my prescription glasses (the ones made especially for computer)almost the entire screen is blacked..or grayed out, depending on the light. AND I have a 21" (20" viewable)computer MONITOR!
What is really upsetting is even if your eyes are closed you still SEE all the strange things that is happening..like different lights,flashing colors,blackness of the original potato-shaped blind spot. So it is constantly haunting you. What's worse, my good eye now has new and very large floaters and drusens (which are fat cells that do not get rid of toxins as they are ment to do). I also have a concentrated amount of drusens in the periphral of that eye. And to make matters even WORSE! My brain is sending IMAGES to the good eye that are actually only in the bad eye!!
I'll tell one thing! If it wasn't for the support group of other people with this disease, plus a doctor, psychologist etc.. I would be totally in a panic and probably would not even try to do ANYTHING!! This MD group's homepage is http://members.aol.com/danlrob/MDpeople/ is a LIFE SAVER! Please, if you have any form of eye disease..please go to this url and find the support, information etc. that you need.
It's Friday today..my next appointment is on Tuesday of next week. I'll be back to update this after that.
MAY 3rd, 1998 Hi.. I have neglected to update this and the fact that I keep forgeting TO put a date down.. really mixes me up when I come to update this.
On my last appointment I was given 5 weeks before the one coming up on May
13, 1998.
The doctor did not do any laser. The photographs shows pretty much what I
see when I look with just the bad eye. It still has alot of blood and he
again said, "Donna I am still hoping for more improvement as the blood is
obsorbed but it may take months. Then he smiled and said. "you don't have
to come back for 5 weeks....which is the longest stretch of time he ever
gave me between appointments.
Strangely it scared me. I mean, it was as though he was abandoning me.??
Silly eh? But as long as I was being zapped I guess I felt one day it would
zap all the bad vision away..... Dumb, I know. But it's the only reason I
can figure that makes me feel so sad when I should be feeling good about
no new blood vessels to zap.
It has been 4 weeks of that 5 weeks and at night when I cover my eyes I see
the big black area and its shape..like a shoe box...and then I see the potato
shape in the middle of that.. the box part covers my central vision..the
potato has never moved and is slightly to the left of my center vision.
I have tried to be happy that maybe there will be no more zaps. ..but
I guess I am still in denial in a way..in that I'm not ready to accept the
box as a permanent thing.. Because even where the blood is clearing it is
so blurry..so Under-water like.....or looking through a thick thing of moving
vasoline. It's absolutely not useable! Yet people in our MD group here
on the internet are using different Aids such as I explained above and
have mastered the art of "Not looking directly at what you want to see".
I've tried but so far I can only recognize that it has colors but if I
didn't already know what I was looking at I don't think I could tell you what
I am seeing with the side vision.
Thank God I still see pretty good with the other eye. It too is blurry but
more the type of blur we see when our glasses have smudges on them. The
imaging from the other eye is not bad except in a dark room. I close my eyes
and see one image...the image from the bad eye.
Last night it looked like I have another leak in the bad eye..as the box shape
had an elongated black, broad band along the bottom and off to the right of
the box. But this morning I don't see that so? it is very hard to
see the exact same thing each time you try. Different light...different
times of day...whether eye is open or closed etc... it seems to change just
enough so that you cannot really say for sure....that it's worse or what??
But I AM sure that on Fridays when I do the bills... it's getting harder and
harder to read the fine print they use. I have to use a magnifying glass
that evidently is too weak because it doesn't even help me that much.
Well I've rambled enough now. I've been keeping busy grooming the dogs and
helping my sister and her daughter learn their new computers.....
Where the potato shaped thing was...there was real black stuff all around it.
The doctor said... between the potato and the outer ring of the box you may still
gain more vision here in time. Not knowing what is under that blood means we can
only hope it does not leave permanent damage like it has on the outer outline of the box.
Then he showed me the photos..(photos are always put on a monitor)of my good eye (left one) and he said,
"Last time we took photos I was concerned about the bottom of this drusen area here..I thought we may have a blood
vessel there. However, now it is evident that it is indeed a weak spot but is not a blood vessel where it does not belong".
He then reminded me further that there is nothing he can do about the drusen. If he did it would
CAUSE blood vessels to form. The photos showed the 4-5 little spots where the drusens had gathered so far.
The drusen make my vision blurry in my good eye. It also of late has turned a sickening brown when I view a white page
here on my computer. It looks like I have sunglasses on.. that have a heavy tint of brownish yellow.
This awful color plus the black floaters and the blur really makes it hard to focus past all that and read or
work here on the computer. I keep wanting to clean my glasses to make it better..or blink..hoping it will clear away.
Well it's only one week later now and I went to my sister's home to help her learn her computer. A strange thing happened. When I went to bed there...and checked each eye ..I noticed my good eye seemed to have a round, filled in, silver spot with my eyes closed? The room was dark except for a soft light coming through the window. I closed my eyes several times and saw the round thing. I knew it was not the usual imaging from the bad eye because it was round, not box shaped or potato shaped.
When I woke up I quickly checked it in all different lights...was gone? The next night the same thing happened? When I came back home and checked it at night....it was not there anymore. At first I felt maybe I'd better call my Dr. but it has not returned so I won't.
I was feeling pretty down...so decided I would see if I could get new glasses. I was really hoping
the eye doctor could fix the good eye's vision alot. Since I had just gotten glasses a few months
ago I knew my insurance would balk. And balk they did when I asked them about it. The insurance lady
then listened to my story and said if my eyes have changed that much and the doctors sent them a
letter stating that..well, then they would probably make the exception.
I made an appointment and had my eyes checked. The eye doctor said my good eye had gotten much
worse. I knew that because when she kept changing lenses and saying,"Is this better or worse?"
I had to keep saying... they look the same...they look the same. I kept saying put one that magnifies more.
Later, some did seem better but it was so close that I still feel I was guessing more then seeing an improvement.
Unlike other exams where I would finally say, "OH THAT IS GREAT...OH YEAH THAT IS MUCH, MUCH BETTER!"
I came home feeling pretty sad. If glasses can't even help the good eye...well. I was just sad. It's now a week later and I have not heard whether the insurance has given permission or not. I really don't care anymore though because I don't think they will help anyway.
My next appointed is 8 weeks from now. My Retina Specialist feels I am relatively stable and adds a few weeks between appointments each time now. See you then.... ......... I'M BAAAACCCCCKKKKK.... 7/15/98....Here is the update regarding my appointment with the Retina Specialist.
The photos were taken. On my WET eye. One side or the shoebox is permanent damage. Explained to me this way. I thought my potato where the laser burns live grew or?? "Donna, That is not your potato (grins and says I love your names for things) that is scar damage from the blood vessel that I lasered over here...(pointed to a tiny thing) is your potato."
"Me" "But doctor you zapped it way over here"?????
"Donna, yes. That is where I lasered it and all of this (pointing all over the place) is damage from the blood and this (pointing to a huge glob) is the scarring caused by the blood vessel after it was zapped (as you call it)".
Note..this doc is the cutest thing I ever saw.
"Me" "Ok so I already know that eye is kapoot doc...but how can I keep the imaging down enough to keep my eye headachs away"?
"Donna, I will give you a referral to a doctor that specializes in aids ..Dr Reed. You will need to call your insurance and see if it covers it"
"Me" "What about the drusen gunk in the other eye?"
Doc... "Well it's staying pretty much the same and we'll still keep an eye on the weak spot here....(points again to the bad eye photo)."
"Me" "Doc, you know if we could get the imaging of the bad eye from making the other one just as bad...I really wouldn't complain at all".
Doc.. "I know. Dr. Reed will most certainly be able to help you make the best of what you have." (I was tempted here to ask if he could get me a new eyeball, body etc... but held my tongue.....litterally with two fingers...well almost) He touched my shoulder ....wow.... and said, "I'll see you in 3 months".
Okay so thats what went on today. Of course I got the juice fix first....in the arm.(They inject natural juices of some kind as it shows the inside or? of our eyeballs. Meant to ask him what flavor they use.
Well that's it for another 3 months now. (10/14/98..3:00p.m.) So I'll continue then... I Must add that someone (I don't have a clue who) left a white plastic bag hanging on my front door while I was gone. It had a beautiful PIE in it and a note that said, "GUESS WHO"????? I've called everyone I know....?? Maybe my BAD gremlin has changed his ways??
Okay.. 3 months are here and once again I went in for my appointment. He did the photos again and we are still stable. He then handed me a brochure about a low vision clinic in our area. It had prices of over one thousand dollars just for a "workup" to see what aids might help..forget that! This time he set the next appointment to 6 MONTHS! I felt abandoned instead of relieved?? I thought this a bit wacky but then realized I must have still been kind of in denial and this length between appointments suddenly made me face the REALNESS of my terrible vision. I had to accept that it will never be better and could get worse. It seems that as long as I was going often I felt "something is being done" My vision could get better maybe? I actually cried before allowing me to accept this for what it is.. an Eye Disease with no cure...nothing will make me see like I could before MD..
One of the fellows in our group said a sentence that has helped me sooo much. He said...THERE IS LIFE AFTER MD.... I guess because we never know what our eyes will do next..knowing life indeed goes on....helps to accept it. Otherwise.... the "holding our breath because we know our eyes can get worse at any time...leaves us in limbo...as to our future...that too was in limbo .. instead of looking ahead more.. Its just too scary to look ahead..at least for me but that sentence still helped me a lot.
When we get too down about it all someone always reminds us...You won't go completely blind....you will have the sides of your eyes (Periphral). To make this known to those who don't understand....... I ask that you remember when you said.. "I saw her in the corner of my eye".... Well that is all we'll have. Can you believe people are able to even read with the SIDES of their eyes? I've been practicing so if my better eye goes from Dry MD to wet MD I'll be prepared. I cannot even begin to read that way....even if my nose is right on top of something. I close my better eye of course and practice only with the bad one. Others encourage me to keep trying... Try it your self ...look straight ahead....see if you can read something from the side of your eye.. Seems impossible right?
I'm baaaaacccckkk..
Okay I now have an appointment with a Dr. Krausz,MD.,Ph.D. on June 8,1999.
My Retina Specialist wants me to see her to find out the "health" of my eyes.
He wants it because for the last month or so I see my world at a slant? It's slanted
about 5 min to the right..looking at a clock for my world.
I'm getting use to it though because Dr. Krausz was so booked I've had to wait
a long time. It still is there if I'm looking for it but otherwise its not bad.
I think he also wants Dr. Krausz to check my side vision in the bad eye.
I still keep spilling things and knocking things over!! You should see my dogs hair cuts these days. LOL pretty bad. eeek! More later.
XXXXXXXXXXXXXXXXXXXBAD NEWS AGAINXXXXXXXXXXXXXXXXXXXXX
Hi again, August 24, 2000
Now I have some horrible news. sniff sniff Everyone with this dang "Wet Version MD" usually has the slow "Dry" version in the other one. Now all.. but a lot of folks. As you know I have had the "dry" version in my left eye.
We all dread the fact that it MAYBE will turn to the fast "Wet" version. I checked the Amsler Grid on the fridge a few days ago.. as I do each day and I SAW THE DREADED JIGAJUW (bent lines) in the periphral of my better eye. I immediently called my Opth and she got me in fast. Then she said I had to go quickly to the Retina Specialist....it was then I found out that the one I had (that I trusted and has looked after me from the begining) was no longer covered by my EYE VISION INSURANCE! It seemed once again they changed clinics!
So I was forced to go to yet a different Retina Dr. They put the dye in my arm ..took the photos and we waited. When we were called back into the office the Dr came in with a sheet of tiny little pictures!! My other RS shown my photographs on a large monitor! I could hardly see those little round things. So I just listened to the bad news.
"It has turned "Wet" Donna. But the fluid is not definable enough for me to know if its a leaking blood vessel or Subretinal fluid. Therefore I cannot qualify you for the cold or hot laser treatment."
"Please come back in a month or sooner if there are any more changes." I'm watching the grid carefully and it seems to be staying in that one spot..in the middle of a cluster of drusens. If it was a leaking vessel I'm sure by now the blood would be all over the place and my center would be black. He said the fluid can do as much damage as a blood vessel leak.
I asked if it turns out to be subretinal fluid then will it get worse,stay the same or go away? He said I could lose that eye overnight or not for months. The fluid can increase or stay the same for awhile but it usually gets worse. GEEEEZZZ!
If it is a blood vessel leaking and the photos show it real good I guess they would try the new method of lasering with a cold laser which does not add to the problem and leave scars like in my other eye.
Talk about STRESS!
I must say this... I'M AFRAID TO GO TO SLEEP ANYMORE!! Not only did I wake up years ago to my best eye being blind but about 2 months ago I woke up and my face didn't move on one side? I thought I was going nuts or something. Kept going from mirror to mirror. Then I thought, "Oh my God I've had a mini stroke!"
I tried and tried to talk to my primary Doctor but just got the... push this button etc.. and then the ...record thing. I recorded what was happening and that I wanted the Dr to call me now. But an hour went by. I repeated it.. and another went by. I can't drive anymore of course and my husband wasn't home from work yet.
I finally gave up knowing the office would be closed by now. Jack took one look at my face and his went white. "Did you call the Dr?" he asked. "Well of course I did but it didn't do a bit of good! You try it! Maybe you can get a real voice to answer!"
After two tries he took me to emergency. They quickly put me in a room on a cot where one doctor after another came in and checked what didn't work and what did. They were afraid it would continue to get worse as they didn't know for sure what was going on.
Then machine tests..pokes etc. etc... The doctor then came in and announced that they still were not sure but we should hope that it is not a stroke but Bells Palsy. "Say What?" I yelled. "What's Bells Palsy?"
"Well Mrs. Broadstock Bells Palsy is like a mini stroke but in most cases it goes away and your face will be good as new again." I quickly said.."How long would it take to have my straight smile back again?"
They moved me to a regular room at the hospital and did some more tests. At 3 a.m. my Doctor came in and put his hands up like.. "I'm so sorry you could not get a hold of me but you did the right thing.. this is an emergency! He wanted details about my trying to reach him and said it would never happen again. He then said I should tell anyone who answers that "We've (meaning him) already talked about this" and they would have immediently gotten him on the line. ???????
Oh well.. So they finally were able to say I had this new Strange thing called "Bells Palsy". Since I knew nothing about this I quickly got on my computer and read and read...then I found a Support Group. People were saying... "Ohh no! I've got it again and now its hit my other side" I about fainted. I would wake up each moring...and went down my checklist.... Is my heart ticking? yes.. are my lungs working? yes.. Can I still see anything? yes.. Is my face unfrozen? no.. NO??? OHHHHHHH ARRRRGGGGHHH
By the way... THEY feel this crazy thing is brought on by Stress! Who has stress? yeah right.
In detail... it seems if we've had Chicken Pox then we have a little virus devil that sits up there and either stays put and behaves or it travels to our NUMBER 7 nerve in our noggin and aggravates it till it swells. The brain says... oh oh... and quits sending messages to one side of my face". It hit the side that my best eye was on and I could hardly open and close it. It stayed open just a teeny bit at night so would get dried out and hurt. I was warned not to mess with the side ..don't rub it or try to use it.. because in its own time it would get the correct messages from my noggin and all would be good... on the other hand if I try to rush it or teach it (cuz it is not damaged it is just sitting and waiting for the jolt from above) well then when the brain did allow No.7 nerve to work again.. it may read wrong things. Like maybe I'd want to smile and instead my eye would blink. LOL Hey I kid you not!
Long story short. it took 3 MONTHS to get back to normal and did leave a bit behind.. No one else notices it but when I relax my mouth and have it open a little you can see some of my bottom teeth on the left. The bottom lip is just down a bit.
But in all this junk I DO HAVE SOMETHING I'D ALWAYS WANTED... DIMPLES and I get to keep them cuz that's how it healed. Yup! In school study period I used to put a pointer finger on each side of my cheek hoping I could MAKE dimples...haha Well that's about it until my appointment on AUGUST 14TH,2000 I'm sorry I ramble so.. If you've read all of this....you deserve a hug..((((((viewer)))))) God Bless you all, Til next time my friends. DONNA
Thanks so much for taking the time to read this and God Bless.
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