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KC-er's Views
on KC Treatment Options
Below
are examples of problems and experiences of people with Keratoconus.
This is an amalgamation of typical stories.
KC-ers views
about Glasses
KC-er #1
My vision was pretty good with glasses when I was diagnosed with
KC. My doctor told me to go with lenses even though I could still
see well with glasses. He told me the lenses would help reinforce
my cornea and give it some strength. I didn't really like the lenses
as when I went to my glasses I could hardly notice the difference.
After a while I just stopped wearing the lenses and went back to
my glasses. I see pretty well with them and just don't want to change
at the moment, not until my KC progresses.
KC-er #2
I still see quite well but with my glasses. I'm still doing ok with
them. My doctor told me while my vision is satisfactory to me and
I'm able to drive legally they see no point for me to move into
lenses. They believe in the least invasive treatment first. So I'm
going to stay with glasses for now.
KC-er #3
I wear lenses for driving and work but still wear glasses around
the house. I don't get great vision from glasses anymore but I get
enough to do minor things around the house and give my eyes a bit
of a rest from lenses. My glasses are huge milk bottle things and
make me a bit dizzy when I wear them but they are still handy for
me to wear from time to time. Although, I think in a few years I'll
only be able to wear lenses.
KC-ers views
about Contact lenses
KC-er # 1
When I was first diagnosed, I was told that contacts would stop
my progression and that a transplant was a cure. My doctor told
me that the important thing was that they caught my KC early. I
felt relieved and remember telling my parents about my KC... telling
them not to worry as the doctor had told me that all I had to do
was wear contacts for 4 hrs a day and that would stop my KC from
progressing. Then I went to the internet and went to a few websites
such as KCenter.org and the NFKC.org. I was shocked and scared by
what I read. What they were telling me wasn't the same as what my
doctor was telling me. After talking to many other KC-ers and the
doctors on the various website, I realized that contacts didn't
stop the progression. They just helped with vision when glasses
no longer worked.
KC-er # 2
The first thing that hit me about contacts was the cost and some
of the terrible stories I heard from other KC-ers. The thing that
really scared me were people telling me that contacts caused scaring
and made KC worse. Although this was coming from other KC-ers, not
doctors. This really played on my mind and upset me. I had never
worn contacts before and didn't know what to expect. The night before
being fitted for the first time, I couldn't sleep and just couldn't
get the thoughts of scaring out of my head. I also remember reading
a post from a KC-er who got a plunger stuck to their eye. I found
all these stories really frightening. Also, some KC-ers had problems
with the cost that they would need 3 or 4 lenses before they found
the right one. Sometimes their insurance companies wouldn't pay.
This all played on my mind and I was scared stiff when I went for
my first visit.
KC-er # 3
When I first tried RGP lenses I found them a little uncomfortable
but at the same time I was amazed at how good my vision was. Or
really, should I say how BAD my vision had got. Putting on my lenses
was like plugging in some super graphics card into my eyes. Everything
had a depth and color I couldn't believe. The shadows and shades
were amazing. It was like looking at the world for the first time
again. But even with these new found windows, I found wearing the
lenses a little hard at first and could only tolerate them for 30
minutes or so. I also had to learn how to put them in and take them
out. As I went back to my fitter, they started refining my fit and
within a few weeks, I was wearing my lenses longer and longer. Now
I'm able to wear my lenses for 13 - 14 hrs a day. They go straight
in in the morning and I take them out before I go to bed. I still
have problems with them sometimes but all in all, I get on with
them pretty fine and can carry on with my normal life. I asked my
fitter about scaring and they told me that sometimes they can cause
a little scaring but most scaring is due to KC progression not the
lenses. If I have regular check-ups and a good fit, it's unlikely
I'll ever suffer serious scaring due to lenses.
KC-er # 4
I've had a tough time with lenses. My cone is quite steep and in
a difficult place. I've also had a few corneal abrasions which really
hurt and stopped me from wearing lenses for a while. My lenses are
my life so when I can't wear them my life stops. I've tried many
different types of lenses from your standard RGP to soft perms but
I've had problems with them all. I'm battling through with lenses
but I can't say life is easy with them. Quite often, my eyes are
really red and people at work look at me strange as if I'd been
out partying all night or something. I quite often have to go into
the bathroom and clean my lenses and re-wet my very dry and sore
eyes. I'm battling on but KC really gets me down at times and lenses
are not easy for me. My KC is still progressing and this makes fitting
lenses so much harder. I just wish there was something else out
there better.
KC-er # 5
My doctor told me my cone was too steep for lenses and that I should
go on the transplant list. I decided to go to another doctor for
a second opinion and he suggested I try piggy backs-where you put
a soft lens on top of a RGP. This worked great for me and now I'm
able to wear my lenses all day and stay off the transplant list!
Piggy backing doesn't work for everyone and I know people who have
had real problems with them. But they worked for me so I guess I'm
just lucky.
KC-ers views
about Transplant
KC-er # 1
I didn't know much about Keratoconus when I was diagnosed with it.
There wasn't the internet at the time or any one else I knew with
KC to talk to. I was told I needed a transplant in my right eye
and I didn't question it. In hindsight, I feel I was pushed into
a transplant too quickly by my doctor. I had a really tough time
after the operation and had problems with my stitches. My transplant
vision is terrible without a lens, much worse than my other KC eye
which hasn't had a transplant yet. However when you put a contact
on it, it has very good vision, far better than my other KC eye
with a contact. But at the same time my transplant eye feels strange,
as if it's not part of me. It's really difficult to describe. Ten
years after my transplant, I noticed my other KC eye hasn't progressed
much. I now often wonder if I went for the transplant too soon.
Don't get me wrong- with an RGP lens my transplant is wonderful
and you couldn't tell I had a transplant even if you look really
close at my eye. But I'm still faced with needing a RGP lens to
get good vision and I'm also a little scared of rejection or of
damaging it as it's much weaker than a normal eye. I guess I can't
get that nagging thought out of my mind that perhaps I could have
avoided it. My advice is to get a second, third and forth opinion
before you have a transplant. There's no going back once you've
had one. They don't always work out the way you thought. So make
sure it is ABSOLUTELY the last resort.
KC-er # 2
I basically couldn't see anything in my left eye, which had very
advanced KC. My cornea was very thin, too steep to be fitted with
a lens and there was a lot of scaring. My doctor then suggested
I have a transplant. The operation was quick and without problems.
It's been over 15 years since that transplant and I'm very happy
with it. It brought my vision back to an eye that was all but lost
for me. I'm so grateful to the donor's family, as they gave me such
a gift. I've never had any problems with it and I am able to get
20/20 vision with glasses! I've now just had my other cornea transplanted
and the operation went well. It's still early days and can take
up to a year to heal but I have a really good feeling about it.
I can already see clearly out of it compared to how my eye was before
the transplant.
KC-er # 3
I've had two transplants. My first transplant went well and then
my vision started to change. My doctor then told me my Keratoconus
had come back. I was really shocked as I didn't think KC could come
back on my donor tissue. He told me it was likely that it was the
remaining tissue underneath the donor tissue and that this was what
was causing the problems. I'm told that Keratoconus returning is
not common but can happen.
KC-er # 4
I'm over 45 years old and still wear lenses and get on fine with
them. But my doctor advised me to have transplants done on both
my eyes before my insurance runs out. They said it was just a matter
of time before I needed them and better to do them while I didn't
have to pay for them. I then told some of my friends who have KC.
They advised me against having a transplant while my vision was
still good with lenses. After doing more research on transplants
and talking to some people who have had them, I'm definitely not
going to have a transplant until I need one. While my lenses work
for fine me, I'm sticking with them.
New and Unproven
Treatment Options a KC-ers view
KC-ers views
KC-er # 1
I'm excited about some of the new treatments on the horizon. Most
of them are surgical treatments but since they are new, you don't
know the long term results and this is what worries me about them.
KC-er # 2
Some of the treatments claim to stop progression. Others claim to
cure Keratoconus, although they are the ones without any peer reviews
or formal controls. What worries me as a parent is how to make what
seems an impossible decision for my child. Of course, I want the
best possible care and if there was a treatment that could cure
my child, I would take it in a heart beat. But I just couldn't live
with myself if the treatment ended up hurting them more. You also
keep getting hit with conflicting information. Some doctors say,
take the treatment now because it will stop the progression. These
are normally the doctors performing it. Then there are others who
say, stay with standard treatments because they don't really know
if these new treatment claims are true.
KC-ers #
3
Most of these new treatments add "may" or "so far"
to their claims and so you pretty much know what you're getting
into. These treatments hold up hope yet they are still new and hence
no one knows the long term results. Once in a while though you get
doctors coming on the internet saying they have a cure. I remember
one time a doctor came on saying he had a wonderful present for
all us KC-ers. He claimed he had found a cure for KC. However, he
wouldn't tell us what this cure was or the cause of KC. We had to
come to his clinic and pay for the treatment first and then he would
tell us. Other doctors have used scare tactics telling you that
contacts cut your eyes and can make your KC worse. Some boast that
transplants fail very quickly and that as KC-ers we've all been
lied to and time is running out as our KC is only progressing and
getting worse, but don't feel dishearten as they have the cure for
us! These kinds of claims have caused terrible fights among fellow
KC-ers who normally have a lot of respect for each other. I guess
the worst part of these "cure" claims is the fighting
and division they cause. None of these kinds of claims are accepted
by the general medical community yet you'll find such claims by
doctors on the Internet all the time. The Internet can be a
double edge sword and you have to be careful.
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