Talk:Keratoconus

Archived to do list: Talk:Keratoconus/to do

Rearrange Treatment Options

I don't believe the most invasive and severe treatment options(corneal transplant) should be first even if they are the most well-known, as the uneducated reader would be best served to learn about the best credible alternatives before moving on to other worst-case treatment options.

For instance, crosslinking is becoming a true hope for a cure for this disease and many patients are unaware of it as a treatment option.. --arpowers (talk) 19:08, 26 December 2008 (UTC)

Write a proper separate article on the crosslinking, and I will translate it into Russian. A link then could also be placed into Corneal transplantation's "alternatives" subsection. --CopperKettle (talk) 04:28, 8 January 2009 (UTC)

Additionally, Intacs (ICRS) have over 10 years of clinical research, hundreds of peer-reviewed articles and federally regulated clinical studies to reference when looking for a clinically studied keratoconus treatment to consider prior to PK techniques. I think the order is fine in that historically, Contact Lenses are the first line of treatment followed by PK & ICRS. We are just now learning about cross-linking and adequate due diligence should be observed so not to jump quickly into an unknown treatment option like cross-linking without adequate clinical evidence. --intacs —Preceding undated comment was added on 20:19, 24 February 2009 (UTC).

Anonymous contribution about rigid CL

I quote:

It's important to note that although the rigid contact lenses help to provide the best possible vision, they do not affect the rate of progression of the condition. --ref--http://www.rnib.org.uk --ref--

- the phrase is strangely built: "although it is good, it is good"; I doubt the rigid lenses do not affect the KC progression; the link given is too general. --CopperKettle 20:26, 19 January 2009 (UTC) Here's the diff. --CopperKettle 20:28, 19 January 2009 (UTC)

The given URL was wrong; I have corrected it. I also reworded the text, removing the "it's important to note" part: the reader should be able to decide for themselves whether something is important. — BillC ^talk 08:34, 20 January 2009 (UTC)

C3-R corrections

I deleted inaccurate statements about riboflavin penetration and what the FDA legally has jurisdiction over.

1. It is now clear that use of tetracaine opens up epithelial tight junctions to allow riboflavin to penetrate. At the December Crosslinking Congress, Wollensak discussed that his research has confirmed this to be true which corroborates cited studies by other doctors.

2. The newly cited Hayes study has many flaws including that it was performed in porcine (pig eyes) not human eyes. This is the citation for a letter to editor that reports quite a number of flaws in the Hayes study that render it essentially no applicable to living human cornea crosslinking.

Effect of epithelial debridement in corneal collagen crosslinking therapy in porcine and human eyes. Yuen L, Chan C, Boxer Wachler BS. J Cataract Refract Surg. 2008 Nov;34(11):1815-6; author reply 1816. No abstract available. PMID: 19006714 [PubMed - indexed for MEDLINE]

3. The FDA does not legally regulate surgical techniques using available surgical instrumentation. Debridement of epithelium is entirely legal within the United States. The FDA has no jurisdiction whatsoever over surgical techniques with available instruments. — Preceding unsigned comment added by Scubadiver99 (talk • contribs)

When conducting riboflavin treatment, is the epithelium most commonly abraded prior to treatment, or not? — BillC ^talk 06:11, 21 January 2009 (UTC)

The above poster forgot to say that their was 1/5 less crosslinking found with the epi on method with tetracaine and with out tetracaine with epi on was only 7%, it was also said only go by peer reviewed articles, as other articles are not accurate but only being used for marketing purposes. And boy, are they desperate indeed to do that and also at the same time confusing matters ! —Preceding unsigned comment added by 149.254.49.33 (talk) 09:11, 22 January 2009 (UTC)

Possible Commercial Motivation For Edits

I have a Master Degree in Biomedical Engineering and I know the difference between a credible article and one that is for marketing. Studies have shown that the on epithelial treatment(C3-R) is not effective, when compared to the 'debrided' form of treatment (Hayes study)..

I feel this should be referenced in the article. What I had said was not conclusive only suggestive of these results.

Now I am very excited about the new crosslinking treatment developed in Germany, as it seems like it really does work. But in order for it to work the cornea needs to be abraded slightly for the riboflavin to penetrate. Read this published article summary: http://www.ncbi.nlm.nih.gov/pubmed/18361990

In the US this is not possible without clinical trials as it is invasive. (there may be other reasons, but I had spoken to someone at Wachler's office who did tell me abrasion was not possible due to the FDA)

The c3-r method that doesn't debride the cornea and is classified as a 'vitamin'. Studies have shown this approach as inneffective, but since they are charging around $2000/eye for it, it is quite the cash cow.

I believe someone has been editing this wiki article under the name "scubadiver99", to artificially support C3-R as a more effective treatment when compared to the German crosslinking method

Again, to be clear Crosslinking does work but only if the cornea is 'debrided', the C3-R 'vitamin' classified treatment does not work nearly as well This misleading marketing must be stopped... I am appealing to the community for help.

___________________________________________________________________________

These above comments by this person are clearly inappropriate and are also without merit. It seems he or she has an axe to grind by the unprofessional tone and ad hominem attacks which are not appropriate in wikicommunity. The Hayes study this person cited is the exact study that Scubadiver99 referenced as having a number of flaws. I agree the Hayes study is problematic.

BillC, if possible to ban this unnamed person from wikicommunity, I would encourage that be considered. 24 January 2009 Corneadoc —Preceding unsigned comment added by Corneadoc (talk • contribs) 10:22, 24 January 2009 (UTC)

Reply

OK, BillC thank you for your objective viewpoint and moderation. I will do my best to be objective.

Why was the discussion removed about the multiple 'sock-puppets' Scubadiver99/Corneadoc was using? I am not the first to bring up Scubadiver99's possible ties to Wachler and the C3-R treatment...

"CorneaDoc" is it a coincidence you have made only 1 contribution to Wikipedia so far and its a comment in this discussion? Why are you are already trying to get me banned?

why don't you let me know what your real name is and we can talk about this? I am more than willing to have a constructive debate, and I am open to any credible literature that supports your claims... the issue is that I have a strong suspicion of commercial motives for those edits.

I have no axe to grind other than the pursuit of what's best for those seeking treatment.

Arpowers (talk) 03:47, 25 January 2009 (UTC)

Proposed Revision To Cross-linking Section

I propose that the following be added back to the article:

1. The difference between the CXL and C3-R procedures (i.e. removal of corneal epithelium)
2. An explanation why cross-linking procedures with corneal abrasion can't currently be performed/marketed in the US.
3. A reference to the results from studies that have concluded that the corneal epithelium should be removed for the procedure to work. For example, this study(@ [Hayes Article http://www.ncbi.nlm.nih.gov/pubmed/18361990]) by Hayes et al which concluded that "Complete removal of the corneal epithelium is an essential component of riboflavin-UVA crosslinking therapy."

Suggested Text:

The corneal epithelium is usually surgically abraded beforehand in order to increase penetration of the riboflavin into the stroma(citation needed). Preliminary studies have shown that this helps enable adequate penetration of riboflavin and thus the effectiveness of treatment(hayes study).

In the US, FDA regulations do not currently allow procedures that include the removal of the corneal epithelium to be marketed (or performed? citation needed).

C3-R, a "vitamin" classified on-epithelial treatment method is available in the US outside clinical trials. Unfortunately, one study has concluded that this approach is likely much less effective than when using the removal technique(Hayes Study).

Andrew Powers (talk) 07:08, 27 January 2009 (UTC)

As also discussed above, it is not correct to say FDA regulation do not allow procedures that...to be marketed. This is just not correct. Legally, this is allowed. Arpowers has not provided any points to counter my comments above in "C3-R Corrections".

The Hayes article is discussed above in "C3-R Corrections" with my prior comment and has numerous flaws as cited and discussed above. Arpowers has not provided any information to counter the cited flaws in the study cited above (Yuen et al). Scubadiver99 —Preceding unsigned comment added by Scubadiver99 (talk • contribs) 05:59, 5 February 2009 (UTC)

response

To use something off-label is in fact correct, but are you trying to tell me that you could market a procedure that removes the corneal epithelium in the US outside of clinical trials? Isn't this what 'off-label' is all about? Marketing is considered labeling.

The reason I know that c3-r is a 'vitamin' classified treatment is because I heard it directly from Wachler's assistant... they also told me they couldn't do the removal technique outside of trials... That is how I figured out this whole gimmick in the first place. —Preceding unsigned comment added by 75.25.174.48 (talk) 08:42, 5 February 2009 (UTC)

Also the Yuen et al citation you are using is a comment on the Hayes study. Just that a comment, which is merely an opinion. And I believed a biased one as I see Wachler on the list of authors. Moderators can find it here: http://www.ncbi.nlm.nih.gov/pubmed/19006714

As a response to your point, porcine models are widely accepted in the scientific community.

I have removed the edits by Scubadiver99, because it was irrelevant, unsupported, and only partially correct. (physicians can perform procedures off-label, but cannot market them as marketing is considered labeling)

Andrew Powers (talk) 08:59, 5 February 2009 (UTC)

FACT-BASED CLARIFICATION

As I stated earlier, it is clear that Arpowers has an ax to grind, despite his denials. His arguments prove a clear bias, which is fine. Bias is bias, not everyone can be objective. His response consists of ASSERTIONS with no factual EVIDENCE. So by your opinion and accusations, EVERYTHING boxer wachler is biased? Where is your proof? I suggest you look at his cv on his website. he was the former director of UCLA's Jules Stein Eye Institute, won numerous awards, published tons of peer-reviewed articles in the field, delivered 100s of scientific lectures etc, etc. Arpowers has no data, only disparaging comments that come from no fact-based position and he conveniently ignores all the scientific contributions boxer wachler has made to the field over the past decade. That's right past 10 years as a contributor to the field of ophthalmology. If you wish to defame character, that's up to you, but I suggest you be careful because legally that puts you on risky footing and opens you up to exposure.

As for your reference 55 about FDA regs, no where in that reference you provided does it say anything about what you are asserting. Again, only assertions no proof. Therefore delete is recommended.

"marketing" is not considered "labeling". Off label procedures are legally allowed and can be marketed. If Boxer Wachler wished to perform epi removal and market it, yes, that is completely legal. Again, Arpowers is only asserting, no proof.

Yuen et al peer-reviewed and published response includes Drs. Chan and Boxer Wachler. Three doctors have cited flaws, significant flaws in Hayes study. Most notable is that Hayes study used DEAD PIG eyes and did not use the same crosslinking protocol used in epi on procedures on LIVING HUMANS. Pig cornea anatomy is vastly different than human cornea anatomy, most notable is the epithelium is twice as thick in pigs corneas as humans for example. Twice the distance for ribo to penetrate to get to stroma in pigs than humans. Hayes studied apples and then erroneously applies conclusions to oranges. Significant flaws prevent Hayes study having relevance to epi on crosslinking in HUMANs. Perhaps if pigs were having epi on crosslinking if could have valid points, but not to living humans.

Scubadiver99

Unnecessary detail

There is no need for the article to go into the level of detail that is engendering the passions above. Patients' ophthalmologists are there to advise them on this, not a general-purpose web-based encyclopaedia. I have trimmed back some of the detail in the section in the hope that we can avoid these problems. Perhaps I can ask you both: what level of detail do you each think is appropriate for an article of this length (50K), and aimed at Wikipedia's general lay audience to carry? —BillC ^talk 08:35, 6 February 2009 (UTC)

Bill, good question. I think the current level of detail is appropriate for the lay public. Scubadiver99 —Preceding unsigned comment added by Scubadiver99 (talk • contribs) 15:57, 6 February 2009 (UTC)

When are the trails for "epi on" going to start ? have they completed ? thats why DR BBW is doing it ? —Preceding unsigned comment added by 149.254.57.136 (talk) 01:08, 8 February 2009 (UTC)

I've been following this discussion and it seems this Hayes study is now being quoted completely out of context. I have removed it and the preceding sentence. —Preceding unsigned comment added by 189.182.108.137 (talk) 06:11, 10 February 2009 (UTC) Anyone wants to comment on this study ? http://www.ncbi.nlm.nih.gov/pubmed/18361990?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=1&log$=relatedarticles&logdbfrom=pubmed —Preceding unsigned comment added by 149.254.58.219 (talk) 00:02, 11 February 2009 (UTC)

Signing posts

Can participants here please sign their talkpage posts: type four tildes (~~~~) at the end of your post and it will be automatically converted to a signature and timestamp. There is also a button above the edit box that will do the same thing. Thank you. —BillC ^talk 08:11, 11 February 2009 (UTC)

Article By MedCompare on Cross-linking

I wanted to add this article by MedCompare in the discussion: http://www.medcompare.com/featuredarticle.asp?articleid=409

In light of this I would like to add back the edits that scubadiver99 removed again:

1. The difference between the CXL and C3-R procedures (i.e. removal of corneal epithelium)
2. A note that the crosslinking procedure is currently in clinical trials in the US
3. A reference to the results from studies that have concluded that the corneal epithelium should be removed for effectiveness. For example, this study(@ [Hayes Article http://www.ncbi.nlm.nih.gov/pubmed/18361990]) by Hayes et al which concluded that "Complete removal of the corneal epithelium is an essential component of riboflavin-UVA crosslinking therapy."...

to quote Wollensok who pioneered this procedure: "The removal of the epithelium is essential for the homogeneous diffusion of riboflavin into the corneal stroma. Without epithelial removal (like in C3-R) the biomechanical effect is less than 50% of the standard crosslinking procedure."

With no replies to this note, I will add this section again in a day or two.

Also I think that anyone wanting to credibly participate in this discussion should reveal their real name and background or not participate at all

Andrew Powers (talk) 08:22, 19 February 2009 (UTC)

Good work AP, to me there has been great desperation from the "epi on" camp all along which is clear to see for everyone that there is over selling going on from them - its the whole world who know this as everywhere they are doing epi off.

About the "Names" used, yes if the content written is suspect then question the author in what their motives are. However Wikipedia allows me to type this with out having a "User Name" - as long as I can do this I will until the rules change, and by that time we must all register to write here. With out registering and being able to write here is a feature on Wikipedia and so allowed by default. We don't know if any of the names here are real, we don't have to have our passports checked to get an ID here or write here with out one, it is (only) the net after all.

Anyway not to let this detract from the purpose of this discussion page and the more important topics here.— Preceding unsigned comment added by 149.254.51.255 (talk • contribs)

Indeed, Wikipedia allows anonymous editing of talk and article pages by default. However, it is still required to sign talk page posts (by typing four tildes: ~~~~ at the end of the post). Things will get very confusing on here very rapidly if people do not do that. Thank you for your consideration. —BillC ^talk 16:55, 22 February 2009 (UTC)

Obviouly it has not confused you Bill, why do you take it that it will confuse others ? Lets not play "Silly buggers" I was not told that their is requirement - look I'm typing away with out a requirement. Besides a "ID" does come up, if you look at the end of a message. Thats enough for me to write here otherwise I would not be able to.

Your ID did not come up at the end of a message. It is there because I went back into the history, found out who said what, and added the {{unsigned}} template afterwards. I will not have time to do that every time. The guideline on signing posts can be read here: WP:SIGN. Please consider signing your posts, I'd appreciate it, thanks. —BillC ^talk 23:32, 22 February 2009 (UTC)

How do I know that the guideline was not added after I posted last ? or you did it ? it only says its a guideline for "good practice" - they arn't going to arrest anyone - but If it makes you happy I sign as Robin Hood

Companys are not Associations or Groups

In light of unraveling that Epi on is/was getting marketed a lot, I am going to remove the boston sclerals site and the Snergey eyes and also a blog - all of where are not "associations or groups". What is the matterwith these people, can't they read !— Preceding unsigned comment added by 149.254.51.255 (talk • contribs)

Removed c3-r from alternative names

As this is a trademarked term (http://tess2.uspto.gov/bin/showfield?f=doc&state=4002:681s7c.2.1) and a separate procedure from the one developed in Germany, that is undergoing clinical research.

Andrew Powers (talk) 09:33, 24 February 2009 (UTC)

I replaced both CCL and C3-R as crosslinking is well known by both terms regardless of trademarking status. In fact, the trademark confirms C3-R was the very first name for this procedure which pre-dates even CXR and CCL.

I also removed Hayes reference. For reasons, please see my detailed reasons outlines about as to why it was removed earlier. Scubadiver99 —Preceding unsigned comment added by Scubadiver99 (talk • contribs) 04:38, 25 February 2009 (UTC) I also edited language on epi removal and added reference for peer-reviewed study by Wachler et al regarding results of intact epithelium. Scubadiver99 (talk) 04:59, 25 February 2009 (UTC) By the way APowers, your Feb 19 comments of merely repeating your prior same points and ignoring the criticisms of those same points is not a productive move for moving this article forwardScubadiver99 (talk) 05:04, 25 February 2009 (UTC).

Look - trademarking a name means nothing, it was good for marketing, CR3 has not been proven - this is what your avoiding or dancing around - its soooo clear to see !!! signed RH

this quote is deceitful, as this study from Chan has been disproved ALREADY (please see te link above) "Some view the corneal epithelium removal as necessary in order to increase penetration of the riboflavin into the stroma[54] while a peer-reviewed study in patients showed crosslinking with intact epithelium was efficacious.[55]" (some real good great bull there!)

There is a desperation here by Scubby, and real big desperation to pevert things. I think he should be banned and banned a long time ago. Why didn't DR BW attened the CXL congress ? he didn't the years before either, what is is scared off ? Dr's laughing at him ? This muppet (Scubby) really needs watching !! signed RH

Civility

Please keep the conversations on this page civil. —BillC ^talk 18:19, 27 February 2009 (UTC)

Frustrating

Civil? This is getting really frustrating. The people who are advocating science and 'facts' are not getting paid to edit this article like scubadiver99 is. I don't understand why it is so hard to edit this article and really believe this lack of moderation is undermining Wikipedia as a resource for medical information. Who is scubadiver99 and why hasn't he or his sock-puppets been banned? Maybe even a full name & background?

My arguments have been well cited and I have spent time making sure they are factual. I have given my name and background (and been threatened). I even reported the 'commercial motivation for edits' on the board...

Who has the power to change editing privileges on this article? BillC I will be civil, but I'm requesting some action be taken on this.

Andrew Powers (talk) 23:59, 28 February 2009 (UTC)