KeraLens - Selbsthilfegruppe Keratokonus - Erfahrungen - Information - Austausch für Betroffene, Angehörige, Ärzte und Optiker - seit über 30 Jahren aktuell - unabhängig - anonym - nicht kommerziell
Mit dem Keratokonus Selbsthilfe Forum verhält es sich so ähnlich wie mit der Demokratie - wenn nicht alle, die daran interessiert sind, aktiv etwas dafür tun, ist es irgendwann weg.
Termine für den KeraLens-"Online-Stammtisch" der Keratokonus Selbsthilfegruppe:
2026: 11. Feb. - 8. Apr. - 10. Jun. - 12. Aug. - 14. Okt. - 9. Dez. 2026 (19:00 - 21:00 Uhr)
-- zum Teil mit Medizinern / Kontaktlinsenspezialisten (wird vorab bekannt gegeben).
Dauerhafter Link zum KeraLens-"Online-Stammtisch": https://lecture.senfcall.de/ker-358-fzk-yqk
(Keine Anmeldung, kein Passwort notwendig - einfach per "Click" zur angegebenen Zeit teilnehmen)
I've got detected with KC in 2000 when I was thirty.
My right eye went very fast to a ruther advanced stage, but the left one was spared and I did all my looking with it. I tried rgps and RoseK but never weared them longer than a couple of days.
Last year I did cross-linking of my worst (right) eye in Dresden with Dr. Kohlhaas and Dr. Spoerl. I am pretty satisfied with the result in terms of the absence of progress and some smoothenning of the cornea.
A week ago I did cross-linking of my best (left) eye in Dortmund with Dr. Kohlhaas and Dr. Maisen . Now with this eye it will be interesting to observe how the vision (and the K readings) will be in couple of months for before the treatment I had a good vision and my will to do crosslininkg was very much subjective and personal.
KC-Experience: 4x transplantiert, 3x an einem auge, immunsuppression wegen ständiger transplantatabstoßungen, glaukom bereits mehrmals operiert, beginnender katarakt an beiden augen. visus mit brille um die 35%. Kontaklinsenunverträglichkeit . augen-op´s insges. 13x. bin bei prof. th. neuhann in behandlung. 5. transpl. steht in den starlöchern.??? mehr oder weniger. das 5. transplantat war bereits am anfang märz 08 gefunden worden. 2 h später, anruf vom Prof. er könne es nicht nehmen. jetzt muß ich also weiter warten. nävus auf der netzhaut inoperabel, tumor in der orbita nähe des sehnerves. visus bleibt erwiesenermaßen schlecht, bzw. verschlechtert sich zumindest in der nähe und an den äußeren gesichtsfeldrändern. visus scheint irgendwie zu stagnieren, komme gerade so zurecht, wobei das Lesen immer schwieriger wird.
Experience with eyeglasses / lenses: Sehr schnell wurden mir harte KC-Linsen angepaßt, die sich aber andauernd veränderten, so, daß der Anpasser gar nciht mehr nachgekommen ist.
Operationen: 1999 wurde die erste Keratoplastik gemacht. s.o. bei und von Prof. Thomas Neuhann. Alle anderen Keratoplastiken (mit wachsendem Vergnügen, ebenfalls vom Prof. Neuhann der sich absolut rührend um mich kümmert. Div. Trabekulektomien, Div. Cortisonspülungen....................alles zwar Operationen, aber immer irgendwie im Vorbeigehen.
you are saying the cross linking was done on your personal will. What do you mean by this? Is it only at a certain stage of KC that crosslinking is recommended?
I got KC diagnosed a couple of month ago, I think I am at an early stage but it is getting worse. So the idea is to get crosslinking done early. I have an appointment with my doctor next week where I want to ask him questions about it. (whether I am suitable und stuff). Do you have any recommendations?
I meant that the objectively my "good" cornea have not changed much during last year. At least the Orbscans that I did in Septemeber 2005, January 2006 and April 2006 do not show much changes. So normally, if there is no change, a doctor would probably recomend to wait until the changes be more pronounced. Why? Because it is sort of surgical procedure, painful night, risk of infection (without epithelium cornea is sort of defensless and that's why one should apply antibiotic drops that doctors provide, as well as vitamine A ointment), partial lost of vision for a couple of days, lite corneal haze for several weeks...So if I do this to my only good eye, that does the seeing, I would render my situation a bit difficult for a couple of weeks. And since I have got no support (no family) the management of this endevour may be difficult. Besides I started to percieve recently that hallos became biger when I looked at the moon or the street lights in the evening. And subjectively I was tired of waitng. So I waited until I have got a good comfortable lens to my right eye that does not see well enough. And I hit the road and managed all the things very well on my own. Moreover, as experience shows the earlier one does it to the KC the beter are the results. So i think I will not loose. I wish I knew this technique 5 years ago...I think I could save my right cornea from deterioration.
I'm just thinking about a similar action.
On my "good" eye I come up to 95% with hard contacts. Now I think about cross-linking. Without the contact-lens this eye is much worse then the operated one - 45% (transplantation at Freiburg at 12.2005).
What do you think about it?
Thomas
2.Mo 15:26 Gott spricht: ... ich bin der HERR, der dich heilt.
from the point of view of the management of the situation, I think you can get on with only one active eye for a certain time. But, have in mind that cornea stabilazes only in 6 months after the procedure. It's shape changes during this time. Which means that a) you will not be able to wear the contact you wear now b) any lens you adopt during this period is a temporary solution for weeks, a month. Ask Tim_OS_78 about that. If I remember correctly he started to put on the lesn in 2 months after x_linking. But I am not sure he keeps it till now...I think you can try glasses. Order glasses just to have it in case of nesessity. It will give you diopters, even if not enough, but more than without them.
thanks for your fast reply - glasses won't work for me - the kc can be corrected only with hard contact-lenses. But my thougts are that the cross-linking might be a way to get around a second transplantation.
Greetings,
Thomas
2.Mo 15:26 Gott spricht: ... ich bin der HERR, der dich heilt.
when I say glasses I mean it can give diopters to compenstae the miopic part of the KC. Which is not nothing. For example if you are having -10 D in miopia with the eye you are going to cross-link, you may order such glasses and use it as a temporary solution...But it is just a theoretical possibility that I never explored myself...
So it is 13 days after the procedure. The haze is still there but much less, yet I do not see the details. I use refreshing drops, just physiological serum to wetten the eyes from time to time. The haze lasts for weeks, gradualy coming away. The nature of haze is a bit misterious. The haze is due to corneal wound healing process, which is a psecific response of the cornea to such a treatment. In principal one can use topical steroids to modulate this process. I did it last year. But not this year.
What I am looking for, is to try to contact people who did cross-linking among the first, in the period of 1999-2004. It will be very interesting and useful...
Thanks for plotting your recovery... It helps so much to read about the detail you write, so thanks for that! I think you have done very well and have got improvements to your sight and hopfully more to come! Congratulations!
KC-Experience: Ich denke ich hatte die typische KC-Karriere mit vielen Ärzten und Optikern, die keine Ahnung hatten. Es dauerte 6 Monate bis der KC diagnostiziert war. Danach brauchte es noch einige Zeit bis ich einen fähigen Optiker vor der Haustür in Osnabrück gefunden hatte. Stand Oktober 2008 bin ich zufrieden auch die beiden Operationen gemacht zu haben, denn seitdem brauche ich nicht mehr alle 3 Monate neue Linsen. Die Augen sind seitdem einigermaßen stabil. Also auch wenn das primäre Ziel der OPs eine Sehverbesserung zu erreichen, nicht erreicht wurde, so war es doch ein Erfolg.
Keratoconus since: Ich habe den KC etwa mit 20 Jahren bekommen, das war 1998. Das ging sehr rapide bergab. Und innerhalb von kürzester Zeit war eine zufriedenstellende Sehstärke nur noch mit Kontaktlinsen zu erreichen.
Experience with eyeglasses / lenses: Ich trage täglich mehr als 10 Stunden die Kontaktlinsen und das ist auch mein Mittel der Wahl, da das schlechte linke Auge mit Brille nicht zu korrigieren ist und bei einem Visus von 0% bleibt.
Operationen: Februar 2005 ARK in Rom auf beiden Augen. Juli 2005 Vernetzung auf dem linken Auge.
Here is the article that should have been on the link above, and i copy it below:
"Eye tests a vision of things to come
Peter Mickelburough, state politics reporter
17apr06
THE eyesight of thousands of Australians could be saved by a new treatment being tested at Melbourne's eye and ear hospital.Simple eye drops and a little light could replace cornea transplants for many sufferers of keratoconus -- a degenerative eye condition that causes the cornea to become thin and bulge out of shape.
Scientists hope the procedure will save the eyesight of up to 50,000 Australians with the disease.
About one in 2000 people has the inherited condition. And until now, the only treatment has been a transplant when the condition becomes so bad it cannot be corrected with glasses or contact lenses.
The new treatment halts the progression of the condition by strengthening the cornea and could be widely available within a year.
German doctor Christine Wittig has been brought to the Royal Victorian Eye and Ear Hospital for the first trials of the treatment, which was pioneered in Dresden, Germany.
"It is most effective at the early stages because it only stabilises the eye at the stage the eye already is," she said.
Dr Wittig said the procedure had a 100 per cent success rate and no serious complications during five years of trials on 250 people in Germany.
She said the one-off treatment was not only less invasive than a transplant but faster, cheaper and more easily transported to regional areas.
In an hour-long procedure, the surface of the eye is scraped before riboflavin (vitamin B2) drops are put on the cornea.
The cornea is then exposed to a measured dose of UVA light, which activates the riboflavin to produce oxygen radicals that trigger a chemical reaction to bind the cornea's collagen fibres together.
The process is similar to cross-linking techniques used to harden plastics, teeth fillings and even heart valves before being implanted.
Dr Wittig said about 100 people would be involved in the 12-month trial, with half randomly chosen to have the new treatment and half left untreated.
Keratoconus sufferer Tanya Wilkinson, who had a cornea transplant for her left eye at just 22, hopes the new treatment will save her from a second transplant for her right eye.
"Having the transplant means another 18 months afterwards of post-operative care, drops three times a day and having the stitches removed . . . and it's sensitive to light," she said.
"I got the condition from my mum and so if I pass it on to my children, it's nice to know that their sight could be saved using this technique."
Health Minister Bronwyn Pike said the trial was another example of Victoria being able to attract the best and brightest from around the world to the state's world-class research facilities.
"Dr Wittig and her colleagues are confident that this technique could be performed in a clinical setting as early as Easter next year, giving patients a quicker, less costly cure for their eyesight with fewer side effects," she said.
Head of the hospital's corneal unit Dr Grant Snibson said the new treatment would also take pressure off the hospital's corneal bank, with about half the state's 300 annual corneal transplants being on keratoconus suffers.
Dr Snibson said there was a shortage of cornea donors. The only longer waiting list was for transplant kidneys."
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