From: JMRmail@***.com
Date: Sat, 19 Feb 2005 00:31:45 EST
Subject: [kc-link] Re: Intacs Update

I had Intacs done on my "good eye" in November, and CR-3 done on both eyes in
January.
My good eye is doing extremely well (thickness of 600+) and I was spectacle
corrected to 20/20 today and my vision continues to improve but now sort of
creeps along. My astigmatism went from 10+ to 6. I've been in GP's and the old
fashioned hard lenses for 25 years and was ready for a transplant.

Because of the CR-3, I am no longer light sensitive. I can go outside on the
brightest of days without sunglasses. Also, I no longer have eye pain. The
procedure in itself was painful.

In November, my fitter determined my "bad eye" could no longer support a
lens. The cone was inferior and had "sagged" creating a cleft of tissue and the
thinnest portion was directly above my blood supply. The doc felt that CR-3
might make it thick enough to do a Lamellar in that area and Intacs in the
center of the eye. I was told because of the location of the cone, my age and the
thinnest area being so close to the blood supply that I was not a good
candidate for a keratoplasty. It was pretty bleak. My doc said he had only one
other patient who's cornea was worse.

I returned today, one month following the CR-3 treatment. My bad eye had
thickened up from 254 to 471 and AMAZINGLY the doc was able to do the Intacs, but
positioned them on top and bottom in such a way as to lift the sagging
cornea. There are still two very small spots that are thin which they intend to hit
with the collagen one more time.

There was a tremendous improvement in the shape of that cornea immediately
following the Intacs procedure which you could see with the naked eye. (The
distortion was so bad that people would ask me what was wrong with my eye because
the iris no longer appeared round and even the color of that eye was strange
from the cornea shape.) Although I have to wait a month, that eye can now be
fitted with a lens again because the cone is smaller and located in the
center. In effect, the cone was moved, but I will still be in KC lenses that vault
over it. It appears like there was improvement in my vision, but it was so
bad to begin with that it is like going from "terribly horribly bad" to "really
bad." It won't be spectacle corrected and I doubt soft lenses will work.
We'll have to wait one to three months for the final verdict.

The doc intends to discuss options we can do to improve the vision, but at
least I am back to being fitted and off the transplant list. This CR-3 is
really amazing. Total cost at this point was $5,600 -- none of it covered by
insurance.

JMR

wow
sembra una roba seria!

hei scaistar scusa l'ignoranza ho provato a tradurre ma non ho capito cosa è CR-3
fai un piacere perdi 2 minuti e spiegamelo
grazie

Crosslinking Collagene Riboflavina Treatments (o una cosa del genere... )

Trattamento con Riboflavina e Raggi ultravioletti...
prossimamente.... aggiungeremo qualcosa di +

sempre dello stesso soggetto:

I had just the Intacs and I avoided the Lamellar -- so far. Tomorrow, I have
the CR-3 again, except this time they are going to remove the epithelium
completely and then do the collagen treatment. If it works, I'll be back in an
RGP by May. If not, it's time for a cornea graft.

e ancora:


-Is there a definitive source on this procedure -- what is it, is it
approved, where can you get it, when is it indicated, does it work, etc?

No, there isn't.

The original research was done about three years ago in Germany on about 26
or 27 KC patients. It is still considered experimental, however, the VERY
LIMITED and INITIAL results show that it halts the progression of KC for at least
three years and no one has had any adverse side affects -- SO FAR. You should
probably spend a great deal of time reading up on it before opting to do it.
I did.

I chose to do it because it did not affect my ability to have a cornea graft
later and I was not a good candidate for a transplant. There was a very
significant risk that I could lose my eye if the graft rejected, so I wanted to buy
more time until artificial corneas were perfected, or maybe stem cell
research got underway. I was willing to go a long way in order to keep my own
corneas.

Also, I wanted to do something to further research for non-surgical
approaches for KC. I am told I am probably the most progressed patient to ever have
CR-3 done and I may be the first to have Intacs done AFTER CR-3 (my cornea was
too thin to try Intacs first then CR-3). I am usually the worst case of KC
(actually PMD) any doctor has seen, or the second worst. I thought it important
to see if they could help people like me. Even if it does not work in the
end, I feel like it will have been worth it because at least the doctors will
know the limitations of the procedure. It may encourage some people to get it
done before they get too far. Most people's KC would not have been allowed to
progress this far, I just stubbornly refused a transplant.

I have a unique life situation that allows me to take off time to go see
doctors and I do spend time letting bunches of people (MD's, CLF's, techs) look at
my eyes, take topo's, etc. I also have the financial situation to pay for
this out of my own pocket. I would travel to any seminar for this purpose, on my
own dime, if it would help doctors treat their KC patients. I have released
all my records to be used for education. I believe this procedure is an
excellent option for some KC patients who are not good transplant candidates and I
want everyone to know it.

We KC'ers simply need more options.

If you write me off-list, I can tell you who does the procedure. I will also
take you into Mexico for the evaluation if you would like. I paid $700 for
mine. It was about 30 minutes. I am having a more extensive one done tomorrow
on the same eye, I'll let you know about it when I am able to write again.

Below are links for reading:

http://www.ncbi.nlm.nih.gov/entrez/quer ... db=PubMed&
list_uids=14701957&dopt=Abstract
http://www.ophthalmologytimes.com/ophth ... Detail.jsp
?id=86342
http://www.crstoday.com/PDF%20Articles/ ... chler.html

Knowledge is power.

(su quest'ultima cosa.. sono d'accordissimo! )

ormai sto tizio lo sto corteggiando...

Date: Fri, 4 Mar 2005 15:29:20 EST
Subject: [kc-link] Re: Quick Update

Had a second go-around of CR-3 yesterday in my "bad" eye. This time, they
removed the epithelium with a laser (boy that was fun NOT) and then hit is with
the riboflavin. Except this time, I was given some type of pain killer or
sedative and zonked out for most of it. It didn't kick in until halfway through
the procedure.
The doc put a soft contact lens on it as sort of a band-aid.

I ended up taking a lot of Vicodin to get through the first 8 hours, after
that, it was tolerable with milder stuff. It still hurts 24 hours later, my eye
is really swollen and I can't do much of anything but sleep. It was much
better than the first time without pain killers.

It looks like it worked, but I won't know for another week.

Will keep you posted.


JMR

scusa scai non ho capito bene per quale motivo il tuo amico non è un buon candidato al trapianto, se puoi mi spieghi grazie mille

ha scelto il trattamento CR3 perchè non gli compromette un eventuale trapianto successivo.
C'è un grosso rischio di perdita dell'occhio in caso di rigetto così sta cercando di guadagnare tempo per arrivarci (semmai) più tardi possibile, almeno fino a quando le cornee artificiali non saranno perfezionate o ci saranno nuove scoperte su cellule staminali

notizie sempre più buone.... speriamo bene

Date: Fri, 11 Mar 2005 13:18:21 EST
Subject: [kc-link] Update

Background:
Had intacs in my right eye (good eye) in November, 2004;
CR-3 in January, 2005 on both eyes;
Intacs on left eye (bad eye) in February, 2005;
Epithilium removed and CR-3 on bad eye again last week.
Still no functional vision in that eye, best spectacle correction is 20/400.
I went to see my CLF yesterday. He's the HERO that has kept me in lenses and out of a transplant for over three years now. I'm giving his wife and him a three-day vacation next month as a gift. What a guy!

I picked up my lens for my "good eye." Best correction I've had in the past
few years with RGP's was 20/25 but with ghosting and pretty lousy acuity. I
was a transplant candidate. I haven't been able to drive for four months now, I
haven't been able to read a book without difficulty for probably two years,
and I've been working with a magnifier, even with my vision corrected to 20/25.

After Intacs and CR-3, I could be spectacle corrected to 20/20-25 but with
some residual astimatism. Now, my fitter tells me that if he didn't know me and
only saw the topos of my good eye, he would not immediately suspect I had KC.
My topo is pretty much NORMAL.

I picked up my lens and I am 20/20 with half of the 20/15 line as well and
PERFECT acuity. My CLF said in three years, he said he's never heard me read
off the lines of the chart without hesitating -- EVER. I've never seen HIM this
happy. My vision is crisp, sharp and I can read again. I CAN SEE!!!!

I had tears in my eyes on the way home and it wasn't because I was getting
used to the lens. I don't know how many years it has been since I've seen this
well, but the relief is so blessedly enormous. You know, there's a big
difference between 20/20 with ghosts and double vision and perfect vision, but I had
forgotten.
I had actually forgotten what it was like to be able to see perfectly. I had
forgotten that you are supposed to be able to see every leaf on the trees, or
the individual blooms on a rose bush. I feel like I've been given a miracle.
To all you docs out there that treat KC: THANK YOU! What a exhausting,
difficult disease to treat. I can't imagine the hours working to get a decent fit
that's slightly better than lousy, not getting paid your full chair time and
watching someone young person's vision deteriorate with every visit. You
listen to us whine and complain, educate us and do your best to keep us going,
knowing that some of us are destined for a transplant. . . or worse. To
volunteer to specialize in this disease is amazing to me, given that the outcome is
rarely a positive one.
YOU GUYS ROCK!
Now, if we can fix my bad eye. . . . LOL.
I won't be around the rest of the day because I plan to take my car out on a
looonnng drive!
The world is a beautiful place!
JMR

Date: Mon, 14 Mar 2005 15:53:59 EST
Subject: [kc-link] Re: Thank-You

I just returned from my follow up visit after the second CR-3 treatment on my
bad eye, which was 10 days ago. It healed beautifully. I can be spectacle
corrected to 20/200, which is up from 20/400 with just Intacs, and amazing
considering I couldn't make out fingers at greater than two feet before that.

I no longer need a transplant in my bad eye. I NO LONGER NEED A
TRANSPLANT!!! The cone is significantly reduced and centered on my eye and my fitter
assures me he can easily vault it with a Rose K. I can get fitted in two weeks.

My eye surgeon told me that I am the worst case of KC he's ever seen
successfully treated on any continent by anything other than some form of graft or
transplant.

He told me that I must have an amazing CLF because, despite the enormous
cleft of tissue on my bad eye from the cone basically collapsing, I had no
scarring on either cornea, making me a good candidate to see how far they could push
the technology. The luck came in that I never developed hydrops, pretty
miraculous given the size of the cone.

I do have my Orbscan from today and will be happy to send anyone a scanned copy. Just drop me an email. It is a pretty pic, that's for sure.
JMR

Ovviamente.. ho già chiesto di avere copia di queste immagini..

Ciao Scai,
in Italia chi si occupa di studiare o applicare questa metodologia di trattamento? Forse l'hai già scritto ma m'è sfuggito...
Grazie,
F.

Che io sappia l'universita di siena lo applica sperimentalmente.
ma è molto complicato entrare nel programma, ed è sperimentalissimo.
C'è un topic a riguardo con il racconto di un iscritto che ha contattato l'univ di siena.

eccolo http://cheratocono.altervista.org/phpBB ... c.php?t=30

ciao
lanas

ragazzi cercando informazioni più approfondite sugli intacs ho letto che si applica su ck di 1 2 3 stadio secondo la classificazione di krimeich
qualcuno sa quale è o se è diversa da quelle che già conosciamo?

perchè i post debbono cominciare in un modo e finire in un altro???

cmq.. JMR è una persona seria. Mi ha subito mandato le mappe.. ma non ha detto una parola.. per cui.. ce le dobbiamo tradurre da soli