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TOPIC: bluesfan's x-linking

Senior Member

Status: Offline
Posts: 124
Date: Sat Oct 27 1:38 AM, 2007
RE: bluesfan's x-linking


I am very disappointed when i read these posts.Are you a doctor juanito?

To begin with,bluesfan xlinked eye is UNDERXLINKED and that is no good sign.It all has do with the concetration of the riboflabin you used.Also what what are you saying about CBM machine?

You should have the UVA-X machine from Switzerland.Why have you made yours?Do you want something cheaper for peoples eyes?Who is the FATHER OF CROSSLINKING?can you tell me?

You say that we are patients and not rabbits but can you tell me which device has been used with the experiments of crosslinking in rabbits?If you are a doctor and you dont know these things its a shame.

You dont choose my friend other riboflabin solutions or other machines for crosslinking.What are you doing?Are you comparing prices?We are talking about our eyes here.

I just visited the IROC center and the riboflabin which the German and Swiss doctors are using is called Medio cross.So why did you have to change from that Protocol?Are you an innovator and we dont know it yet?You dont trust the German and Swiss Doctors?You think in Italy they are better?

The third collagen crosslinking is taking place at Zurich.If you want to perform crosslinking pay the fees and go there and learn.Or otherwise people will sue you.If someone knows this details certainly would have sued you by now.CBM machine and ricrolin?Jesus Crist.Give me a break..

Please my friends go for xlinking in Germany or Switzerland.Dont play with your eyes games.

Sometimes we must be very demanding because we are paying our money and we want the best there is.I am angry when i here these things and i dont know what i would have done if i was treated from this protocol.Be careful.As for the Xlinking-PRK is at least annoying to reffering to that because i almost have 20/20 vision without anything to my eyes.I leave the contact lenses and glasses to you.Learn more about something and then talk.As i said before go to the CONGRESS and you will watch astonished the presentation.But all the doctors are not the same my friend and they cannot perform it if they arent capable and dont have the state of the art technology.AND the most important STATE OF THE ART TECHNOLOGY needs A LOT OF money.Not cheap solutions.

Excuse me for my manner but people should know the truth.We are patiens here with medical knoweldge and nothing should be hidden.

-- Edited by Zeus at 01:48, 2007-10-27

-- Edited by Zeus at 01:50, 2007-10-27

-- Edited by Zeus at 01:52, 2007-10-27

nothing else matters

Veteran Member

Status: Offline
Posts: 39
Date: Sat Oct 27 3:06 PM, 2007

Hi Bluesfan,

Well, I'm coming up on 3 monrhs post C3R and my vision is still fluctuating. As I understand from research and being told by my doctor, vision can fluctuate for up to 6 months post C3R. Even without C3R, all of us know that our vision can fluctuate in Keratoconic eyes throughout the day anyway. So I wouldn't be at all worried. I feel that my vision in my right crosslinked eye is still not quite at the stage it was before the crosslinking. This is normal. This is my own personal opinion, but from everything I've been told and all I've read and researched over the last couple of months your vision is certainly not back to almost normal after ten days. Especially the blurriness. Remember it takes about 5 days anyway for the pithelium to heal plus the eye has been subjected to trauma and takes some time to recover. With regards to PRK or any type of laser surgery after crosslinking, I don't think that there is enough research done yet as to the merits of this after C3R. I talked to my doctor about it and he simply said that he wouldn't rule out the possibility but that for me its way in the distance. I don't even wear glasses only for work and when my eyes get tired! I will, however, enquire about RGP lenses as good vision is critical for my work. I will have a chat with the doctor again next week about these. Well I hope this helps a little and don't be "bullied" into a procedure you might not be comfortable with. Research, ask and then decide.




Status: Offline
Posts: 18
Date: Sat Oct 27 9:06 PM, 2007


Yes I am a doctor, a corneal surgeon performing more than 150 corneal transplants a year, implanting intraestromal rings in two or three patients a week with femtosecond laser and performing cross-linking since one year ago in keratoconus and post-LASIK ectasia patients. Twenty years of experience in ophthalmology. And you?

Just a few answers to you if you are not a doctor and you are not updated in cross-linking treatments. There are very beautiful beaches around the world, not only the one in front of your home.

About the riboflavin

Ricrolin: riboflavin+dextran T500 commercially available in all Europe more than one year ago ( not custom made, as you wrongly suggest) and approved by European Community for use in all the patients around Europe ( not in the lab) Riboflavin drops are aplied 30 min before the procedure until we see its presence in anterior chamber, which is the safest signal that UV will not damage the endothelium. Then riboflavin is aplied every five min when UV is emited for 30 min. This is the international protocol of treatment.


1.-Stromal haze after combined riboflavin-UVA corneal collagen cross-linking in keratoconus: in vivo confocal microscopic evaluation.Cosimo Mazzotta PhD, Angelo Balestrazzi PhD, Stefano Baiocchi PhD, Claudio Traversi MD PhD and Aldo Caporossi MD Department of Ophthalmology and Neurosurgery, Siena University, Siena, Italy

2.-Mazzotta C, Balestrazzi A, Traversi C, Baiocchi S, Caporossi T, Tommasi C, Caporossi A.Treatment of progressive keratoconus by riboflavin-UVA-induced cross-linking of corneal collagen: ultrastructural analysis by Heidelberg Retinal Tomograph II in vivo confocal microscopy in humans.
Cornea. 2007 May;26(4):390-7.
PMID: 17457184 [PubMed - indexed for MEDLINE]

3.-J Cataract Refract Surg. 2007 Jun;33(6):1005-8. Riboflavin and ultraviolet A collagen crosslinking: in vivo thermographic analysis of the corneal surface.
Mencucci R, Mazzotta C, Rossi F, Ponchietti C, Pini R, Baiocchi S, Caporossi A, Menchini U.


The other riboflavin drops commercially available are called Medio-Cross, by Peschke Meditrade. They have two different solutions, one hypososmotic to allow swelling of thin corneas and used in corneas thinner than 400 microns, and the standard one.

About the UV cross-linker

CBM Vega cross-linker: Aproved by CE. Second generation cross-linker device. Made in Italy by CSO Ophthalmic (not by me as you wrongly said). Price 13000 thousand euros (not done in my kitchen) Used in many centers around my country ( distributed by oftaltech s.a.) and Europe. Aproved for its use in humans more tha one year ago.



We bought it because the other device manufactured in Germany ( which you are talking about and today available also by Peschke Meditrade) didn«t have the CE mark aproval at the time we started cross-linking ( almost two years ago, so many patients crosslinked before that date were treated WITHOUT APROVAL OF CE), and our rules is to acomplish the law, not use devices without CE mark. We didn«t start our clinical treatmets until we had a device aproved by the Law. Now we will buy a second one and compare its effects.


1.- The medical devices we doctors use are legally aproved and have been tested in humans prior to obtaining the CE mark. Ŕ Do you think the C3R device used in the States has the FDA aproval yet? Read this link

"Treating keratoconus with ultraviolet-A light and riboflavin to cross-link corneal collagen is a noninvasive procedure with promising preliminary results. Long-term studies are needed to determine the stability of the cross-linked cornea. It should be noted that the ultraviolet-A device and riboflavin-facilitated collagen cross-linking procedure have not yet been evaluated in FDA-monitored clinical trials and are not FDA approved. As this treatment modality undergoes further long-term clinical investigations, it may develop not only into a primary treatment option for patients with progressive keratoconus but also a prophylactic measure in forme fruste keratoconus and/or ectasia following photorefractive surgery to prevent further progression. To avoid seriously harmful side effects, it is important to strictly adhere to the surgical protocol, perform preoperative pachymetry to exclude patients with a corneal thickness of less than 400 µm, and closely monitor ultraviolet-A irradiance with an ultraviolet meter".

2.- I will continue doing my best for the patients and using the "state of the art" and legally aproved technologies .

3.- Please, enter PubMed in google, type corneal crosslinking, read deeply all the references ( you«ll have to pay around 20 bucks for each paper), perform cross-linking and then you«ll have experience to talk about. The more you learn the more you realize how little you know about it and many questions will open in front of you.

4.- Hope this post will answer you in a different way you used in your post.



-- Edited by Juanito at 23:20, 2007-10-27

-- Edited by Juanito at 23:58, 2007-10-27



Status: Offline
Posts: 18
Date: Sat Oct 27 9:29 PM, 2007

Forgot to say:

1.- Doctors of our Eye Clinic have assisted all the Corneal crosslinking Meetings held in Zurich last two years and we have all the CDs with all the presentations.

2.- Hope no Italian doctor read your post.


Senior Member

Status: Offline
Posts: 124
Date: Sun Oct 28 1:24 AM, 2007


What has to do with your experience at crosslinking if you are performing corneal transplants or the rings you mentioned??

You are only performing Crosslinking for ONE YEAR.Am i correct or what?You said it by yourself.So you are having one year experience with crosslinking.Lets say it again 1 year!

You didnt answer me.Who is the father of crosslinking?Where it was borned?IN ITALY??You say you are reading about crosslinking but you arent answering or you dont want to answer to my questions.

The riboflabin you use is made in ITALY.Also this machine you choose is made In ITALY.Have you made a contract with them or you are an Italy Lover?I dont care if someone doctor from Italy read my post.I have the right to say my opinion.Personally i would choose Italy for eating pizza and spaghetti.As you mentioned your kitchen before this made me hungry.

Who can compete with the German experience and technology?Do you know what CE means??Have you got a clue or you saying things only just to say?.

So let me enlight you.CE means Center Europe.This certification is provided by the MANUFACTURER!Meaning from the Italian doctor which has built it.I am repeating it again BY THE MANUFACTURER!This doctor is taking responsibility for the machine.Thats all.

Let me go to THE FDA APPROVAL NOW.Food and Drug administration.So,the machine is it a food or drug??Can you tell me please??Decide it and tell me.

You said before that you are a surgeon with making 150 corneal transplants.And you are saying to them about the 96% of success ha?What has to do this with the crosslinking?If you are making transplants gives you the right to perform crosslinking?

All i know is this.That you are treating persons with ONLY 1 YEAR experience and Bluesfans eye is UNDERXLINKED because you know too much!! and i as you said dont know anything about crosslinking.

Do you know what it is an UNDERXLIKED EYE?Do you know this has to do mostly with the riboflabin you are using?How many times can i say it to get it?

I am visiting the site of the third collagen cross linking which is talking place at Zurich and i will mention now the names of the scientific team which they are going to present.Please tell me if you see your name in their.Ok?

The names are:

Scientific commitee

Mirko Jankov, MD, PhD
Milos Eye Hospital, Belgrade, Serbia
Theo Seiler, MD, PhD
IROC AG, Zurich, Switzerland
Eberhard Spoerl, PhD
University Eye Clinic, Dresden, Germany

Faculty board

Alio y Sanez, Jorge L., Alicante, Spaein
Colin Joseph, Bordeaux, France
Hafezi Farhad, Zurich, Switzerland
Ibrahim, Osam, Alexandria Egypt
Jankov, Mirko, Belgrad, Serbia
Kanellopoulos, Anastasion-John, Athens, Greece
Kohlhaas, Maskus, Dortmund, Germany
Kohnen, Thomas, Frankfurt, Germany
Koller, Tobias, Zurich, Switzerland
Krueger, Ronald, Cleveland, USA
Maier, Philip, Freiburg, Germany
Marshall, John, London, England
Stulting, R. Doyle, Atlanta, USA
Thiel, Michael, Lucerne, Switzerland
Trokel, Stephen, New York, USA
Wittig, Christine, Australia

Do you see any name in here from an Italian Doctor which have made your device?Why he isnt invited?Oh,sorry hope not any Italian Doctor read my post.Whoever wants to study Medic is going to Italy,Bulgaria,Rumania.And these people are rich who dont have the skills to study at become doctors at their country.They just have money and go to Italy with the beautiful Italian girls and to Bulgaria and Romania also with beautiful girls.So lets get serious now but this is a big truth.I know plenty useless doctors which they have studied in Italy.

Alio y Sanez, Jorge L., Alicante, Spaein
Is this your name?I may have keratoconus but i see pretty dumn well.You said that two years ago you were on the scientific team?So why arent you now somewhere?They just forget to invite you?What happened?No room for all?Your institution is located at Alicante??

This is rediculous and you are a doctor.Change the riboflabin for Crist Sake.Someone is going for xlinking and then it ends up with underxlinked because someone thinks he knows better THAN THE GERMAN AND SWISS DOCTORS.The people who gave hope and makes us sleep better at night.

As i told you before here WE ARE NOT CLIENTS.
We have the proper knoweldge for our disease and you cant hide behind articles and paper from publimed or other sites you like to read.The result is UNDERXLINKING.And that counts.You have paniced and you dont know what to say.

-- Edited by Zeus at 01:52, 2007-10-28

nothing else matters


Status: Offline
Posts: 18
Date: Sun Oct 28 7:39 PM, 2007

Hi Zeus

Some points to you ( and read them, it´s interesting):

1.-CE mark: as you can read in the web

The European Commission refers to the CE Marking of products as a "passport" which can allow a manufacturer to freely circulate their products within the European marketplace. The marking applies only to products regulated by the European Commissions of health, safety and environmental protection legislation (product directives) but this is estimated to include more than 50% of the goods currently exported from the U.S. to Europe. All other consumer products are subject to the requirements of the General Product Safety Directive 92/59/EC, which does not require the CE-mark.

The actual CE Marking is the letters "CE" which a manufacturer affixes to certain products for access to the European market (consisting of 18 countries and also referred to as the European Economic Area or EEA). The letters "CE' are an abbreviation of a French phrase "Conformite Europeene" not "CENTER EUROPE" my friend. Where did you get it?. The marking indicates that the manufacturer has conformed with all the obligations required by the legislation. Initially, the phrase was "CE Mark": however, "CE Marking" was legislated as its replacement in 1993.



Seems you´ve never been there or you hate them. Not only a country of spaghetti or pizza or nice girls. A country plenty of good researchers. In Ophthalmology:

a) Benedetto Strampelli. Around 1965 he developed osteo-odonto-keratoprostheses, a novel surgery for implanting an artificial lens in the eye usisng the rooth of a tooth. Many blind people have benefit from his technique since then, which is only done in Italy (Dr. Falcinelli), Barcelone ( in my clinic), London ( Dr Liu), Austria ( Dr Grabner ) and Singapore ( Dr Tan). Sorry if i forgot other people, but for sure it´s not done in Germany. It is a very complex and difficult surgery.

b) Dr Lucio Buratto: one of the father´s of LASIK around the world. Working in Milano
c) Dr Vinciguerra: PRK and PTK researcher well known around the world.
d) Dr Rama: working in epithelial corneal stem cell in vitro cultivation with Dr Pellegrini, who was one of the first physicians in the world to culture stem cells in the lab.

Should I continue? I don´t have any commercial interest in Italy or Germany nor a contract with none. As i explained to you ( maybe you did not understand my post) we used their products because were the only aproved by European Community at that time, and we didn´t want to do the machine and the drops in a kitchen!!!.

Bad technology in Italy? Why the Ferrari won the last World Championship against german Mercedes?biggrin.gif

Please don´t try to destroy the reputation of a whole nation with a single post. I like Italy, where I have good friends, I like Germany, where i have a lot of good friends ophthalmolgists and I have visited so many Universities ( Halle, Hamburg; Kiel, Lübeck, Erlangen Frankfurt, Munchen, Aachen), i like also Switzerland ( visited Bern, Zurich and Geneve), where we buy a lot of our instruments from one of the best manufaturers, Grieshaber ( Schaffhausen). We are not so short-minded as you think.


German team of Dr Seiler are the inventors of the crosslinking, and the rest of us are trying to follow, yes to follow their guidelines. We are using the same concentration of B2+DT500 reported in their papers and the same wavelength of UV, and the same dosage in minutes ( 30) as they describe. As far as i know, everybody is following their way. But, is it an unquestionable truth? Why riboflavin? Why UV? Others have started experiments ( not with patients, take a breath) using other substances and other wavelengths, in pursuit of better and more effective results. That´s how medicine progresses.

I have one and a half year of experience in cross-linking. Fortunately, i was not the first in doing this technique. If i was Dr. Seiler for sure i couldn´t sleep until seeing my first patient done ten years ago and see my initial results. Thanks to God i have now all their knowledge which facilitates the work to me and other doctors that believe in Xlinking. Do you know that the majority of doctors are still reluctant to this technique today?

If i understood from other posts from you, you received Xlinking and PRK, and i´m happy to see that it worked. Only a question: did you ask your doctor to have ten years of experience in doing this combined treatment before doing it to you? This is the only paper published in the world, and this 2007 year about that subject:

Collagen cross-linking (CCL) with sequential topography-guided PRK: a temporizing alternative for keratoconus to penetrating keratoplasty.

Kanellopoulos AJ, Binder PS. Institute, Athens, Greece.
PURPOSE: To assess the effectiveness of ultraviolet A (UVA) irradiation-induced collagen cross-linking (CCL) on keratoconus (KC) progression. METHODS: A patient with bilateral, progressive KC underwent UVA irradiation (3 mW/cm for 30 minutes) after topical 0.1% riboflavin drops over a deepithelialized cornea. Twelve months later, a topography-guided penetrating keratoplasty (PRK; wavelight 400 Hz Eye-Q excimer) was performed in 1 eye for a refractive error of -3.50 -4.00 x 155 by using an attempted treatment of -2.50 -3.00 x 155. At all postoperative follow-up visits to 18 months, uncorrected visual acuity (UCVA), best spectacle-corrected visual acuity (BSCVA), pachymetry, and topography were performed. RESULTS: In the treated left eye, the UCVA after the UVA CCL improved from 20/100 to 20/80, and the BSCVA improved from 20/50 to 20/40. Eighteen months after the topography-guided PRK, the UCVA was 20/20, and the BSCVA was 20/15, with a refractive error of Plano -0.50 x 150. The cornea was clear, and the endothelial cell count remained unchanged. The untreated right mate eye continued to progress during the same period. CONCLUSIONS: The significant clinical improvement and the apparent stability of more than a year after UVA CCL, and subsequent PRK compared with the untreated mate eye, seems to validate this treatment approach for KC. An adjusted nomogram may be considered in the ablation of cross-linked cornea tissue to avoid overcorrections.

One patient published? 22 patients presented in a study in the last CCL 2006 meeting. Hope more studies come soon. We have to wait a little bit more until more light is shining over this combined treatment.

4.- Corneal CrossLinking meeting

Were you there? If not i can give you the names and titles of the Italian Drs who presented papers.

CCL 2005 meeting:

a) Dr Baiocchi:“Eye cross Project Siena Siena”Functional and topo topo-aberrometric
results in combined riboflavin riboflavin–UVAcorneal cross cross-linking: preliminary
report of the Siena trial
b) Dr Mazzotti: Analysis with confocal microscope of microscope corneal changes in keratoconus after treatment with Riboflavin-UvaCross-Linking: First : in vivo Confocal Study in Humans

CCL 2006 meeting

Round table discussed points:

Ways of administration
Evaluation of success
Follow up
Ways of administration of B2
Ways of administration of Riboflavin B2
Epithelium: should we remove it or not?
Oral administration: does it make sense?
Is the yellow flare in AC so important?
Do the corneal scars alter the penetration and saturation of the cornea?
Is there a clear age cut off?
Which eye to treat first



Status: Offline
Posts: 18
Date: Sun Oct 28 7:46 PM, 2007


Worse BSCVA?
Unstable CL?
How this is too thin? PKP anyway…
Are phakic or pseudo-phakic patients
Evaluation of success
Does success depend on postop care
Steroids? How often, how long?
UV light protection?
How do we define success?
How long should we wait?
If success is not met, what next?
It worked, now what?
When is the cornea considered stable again?
What is expected wound healing after CCL?
How quickly should the patients:
Get back to their RGP?
• Change of curvature…
Topography-guided PRK?
• How deep should we go?
• CCL before or after INTACS?
• What is the influence of INTACS on B2 and UV distribution?

Italian doctors who gave papers

a)Corneal Measurement Techniques Pietro Rosetta Paolo Vinciguerra Elena Albč Nadia Incarnato

b)Confocal Microscopy of Cross-Linked cornea:in vivo qualitative analysis and healing process. Dr Mazzotta.

c) What is new in corneal topography for corneal Cross Linking. Drs. Elena Albč Paolo Vinciguerra
Pietro Rosetta and Nadia Incarnato

d) The Italian Refractive Surgery Society (SICR) results using C3-R Dr. ROBERTO PINELLI,

e) CROSS LINKING: ITALIAN RESULTS. A. Caporossi MD, S.Baiocchi MD,PhD, C.Mazzotta MD, PhD.

This year the chief of our research team, which is german, will assist the Zurich meeting as every year.

Have you been to this meeting? Meeting

5- Underxlinked eyes

Are you able to say an eye is underxlinked three weeks after the treatment without visiting the patient and without been a doctor? Wow, it´s magic. If you read carefully the post of elaine osborn in which her son´s xlinking ( performed in Germany, Dortmund, by Dr Kolhaas, not in Italy) failed, she was told about failure SIX MONTHS after the treatment. There are some cases in which treatment fails, and it´s not depending on the concentration of B2 because we all use the same concentration. It depends on each cornea and each patient. Xlinking goal is to stop the progression of the KC. Can you know three weeks after the procedure that the KC is rapidily progressing without viewing a corneal topography? Have you seen many confocal images to say that?


The food and drug agency is the most restrictive regulatory agency in the world. It regulates the use of all medical devices in USA ( not only potatoes or tomatoes smile.gif). No xlinking machine nor the procedure itself have been aproved yet in this country. Read what a cornea expert in the United States says:

Collagen crosslinking treatments

This is an experimental procedure that is currently being performed in Europe in which attempts are made to strengthen the cornea with riboflavin and UV light. This procedure is not presently approved by the FDA for use in the United States. According to Federal Law any procedure performed in the United States that is experimental or investigational should be performed under the oversight of an Institutional Review Board(IRB). This law is designed to protect patients against undue harm and that they are fully informed about any potential untoward near term and long term effects of experimental treatments... If you are being offered this treatment in the United States and you are not asked to sign a consent form that indicates IRB oversight, I would strongly advise against you having this procedure involved, since it is being performed outside of Federal guidelines and without any oversight.

Excimer lasers to perform PRK are not aproved to treat keratoconus patients. If you do so you need a special authorisation from the FDA or, if you are not in USA, the patients must have signed a consent informed in which specially it´s highlighted that the procedure is experimental, and it will be approved by the ethical committte of the Hospital you work. These are the rules.

7.- Personal opinion

I have been treating KC patients in the last twenty years and visiting patients who received a corneal graft more than FORTY (4)0 years ago ( enough experience?smile.gif). I am able to say that keratoconus could develop very fast or behave as a very slow disease. It means that we need at least twenty ( 20) years to say that a procedure can halt its progression, specially in young people. We were the first group in the world to publish the keratoconus recurrence more than 15-20 years after a corneal transplantation in a large series of patients studied and folowed around 25 years. The percentage of recurrence of astigmatism was 76%. And it started 7 to 15 years after the surgery, not before. So, when people asume that new procedures are proven to stop the disease i will say Let´s wait and see. With X-linking what we try is to avoid a corneal transplantion and give a chance to the disease to stop, which usually happens at 40´s 50´s. But we don´t know yet.

And bluesfan, Zeus is not Dr BW as you stated in another post.

Good night.



Status: Offline
Posts: 437
Date: Sun Oct 28 7:47 PM, 2007


i do not see your point. To answer all your questions (why uv, why B2, etc) basic literature, the articles of wallensak et al... Last year results are presented here, day one.

Listen to all presentations, ok?

We as patients are perfectly conscious of the fact that x_linking (and some other techniques) are work in progress. I, personally, am a believer that this is one of the right ways to go. And i chose this treatment for myself 2 years ago out of this my personal belief. I consciously took, if you wish, the risks and, thus, the responsibilities. Now we see that the study of this method is taking scale. So participate in it, that's the best you can do!

-- Edited by Yarsky at 20:49, 2007-10-28

-- Edited by Yarsky at 20:59, 2007-10-28

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