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Post Info TOPIC: Goin for IT@!! Finally........


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Date: Wed Jan 23 7:06 AM, 2008
Goin for IT@!! Finally........
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Dear Friends,

After many many months of research, I have decided to go for it.  I have found this site and people on it, extremly helpfull.  However, my dilema was that I had PTK ( augmented PRK surgery) 11 months ago and I was asked by two surgeons to NOT remove my EPI for at least 1 or 2 years.  This was a problem for me, I need Cross Linking NOW, and there seems to be this HUGE debate about the two methods. This left me asking a lot of questions about the U.S. and ITALIAN EPI ON methods.  I really really wanted to do the procedure in Beverly Hills.  I live 20 minutes from there. Convenience. However, two factors have come up recently that have made me decide against it.

Any patients that I have talked to that had EPI ON, have not been clear or precise enough to ensure me that the EPI ON has worked for them.  I have heard good stories about how nice the staff was or how the surgery was painless.  I needed proof, not comforting words  And the Dr's that do the procedure, charge 3 times more than most Dr's that do the original method.  I don't mind paying more for less pain and HAZE, but I need proof that it actually lasts and so far I have not received any.

I have spoken to most of the Dr's that do EPI ON and I believe that their method works and I hope one day soon, their peers review it and confirm!  However, I don't want to spend this amount of time, money and travel to find out 3 years from now that my KC has progressed.  I have really tried to make sense of the EPI On, but have come up with no conclusions that are positive.  Dr. Pinelli would not share his presenation from the 2008 Swiss congress with me. And he would not answer my emails personally.  He is the only one that I have found that supposedly has studies of the Riboflavin penetrating the EPI.  I hope he is right and future KC patiens don't have to have it removed, but for now, it seems a little premature. 

I am going to do the surgery in one week. 31st of January 2008 in Mexico. WIth Dr. Mark Swanson. I spoke to him today.  He is the most modestly priced surgeon I have found anywhere! 1200 US Dolllars per eye,  but more importantly he has agreed to do a PARTIAL epi off on my eyes if nessecary, once he examines my eyes. He too is concerned about the PTK surgery and the possible complications if the full epi is removed.  All the other Dr's I have talked too would not agree to do partial epi removal, and if they did they charged way too much or operated too far for me to travel for the risk involved.

I will be cross linking both eyes and asking for as much EPI to be removed as possible.  Also, I am asking the Dr. Mark Swanson office what Riboflavin drops and intruments they use. Just to be sure we have no BLUESFAN, debates.

Bluesfan, I hope you are doing well.

I will be following up this post with details of surgery and actual results.  But more importantly, I am posting this as always to gain insight into my decision.  If you have any positive or negative experiences with my choice, or Dr. Mark Swanson, I would like to hear from you.  I have 8 days to the surgery.

GOd Bless and wishing all of you who are healing from other surgeries a speedy recovery.


-- Edited by simon123 at 07:41, 2008-01-23

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Simon


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Posts: 124
Date: Wed Jan 23 12:05 PM, 2008
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Hello mate,

You have a tough decision to make.You definetely need PIONEER surgeon to answer at your dilemma.Do you think that Dr Mark Swanson has the answer for you?I googled him my friend and nothing great.I r know.

Who suggest it this doctor to you?You should ask how many patients with kc has he treated.Also,i didnt understand that well.You have booked for an appointment or to perform the crosslinking with partial epi off?Because if you go there and you find out that the riboflabin and the machinery he uses are not the STANDARD or they dont have CE approved what are you going to do?You will still operate with them?

Have you contacted with Swiss Doctors?Theo Seiler at Iroc Center?I agree with you about the EPI ON.Also,have you asked how the partial EPI off will be performed?I think other countries are ahead of Mexico when it comes to collagen crosslinking and generally Eye Care.

I have sent to BLUESFAN a message to ask how he is and i have got no reply.He choose different protocols and principles to this Spain Centre with different riboflabin solutions and the outcome and crossliking was what??I still dont know.I wish he could have chosen differently.

The decision is yours but try to predict and think all the factors that play a role at the cornea.Also Dr Kanellopoulos has published a different crosslinking method with presented outcomes with the name I-CORNEA TAN.With this the riboflabin is entering guided through tiny incisions at the cornea and the epithelium is not being removed.But the riboflabin penetrates through this incisions and all this happens with Intralase technology.Look at that option too.


Best Wishes,

P.S Hoping for the best and keep us informed and ask how long this doctor is performing crosslinking.Generally his experience.




-- Edited by Zeus at 12:07, 2008-01-23

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Date: Wed Jan 23 5:52 PM, 2008
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I have read some studies that Dr. Swanson has been performing INtacts and Cross Linking for many years.  Supposedly, his results with Intacts have been the most successfull, in terms of patient recovery and visual acuity.  This was in the study.   I spoke with him, he has treated over 150 patients with Cross x.

I am asking some tough questions to them now before I go.  I booked the appointment, but if I don't get the answers I need, I will fly to Europe.

The incisions he mentioned would be made manually on the outer edges of the cornea.  He did not go into too much details.  I know that Femto or even other methods are used.  But I guess I won't have the luxury.  In my opinion, I don't think it's too much of a big deal.  The EPI is just the first layer and I think he can manage to do a good job manually.

I have a good gut feeling about this clinic.  He is a pioneer and has a really good reputation. 

Thanks for your replys,



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Simon


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Date: Wed Jan 23 10:35 PM, 2008
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Here are the Details of the Cross Linking Machine and Drops.

hello simon

its gerovitamins its a B2 vitamin geravital 100% pure

The UV machine is called Kera Ker and is made in the US.

sincerely geraldin



Any feedback on this?  Is this even an ongoing issue?  I mean, it was one Dr's opinion that the wrong drops were used on Bluesfans surgery right?  I think it was the good Dr. from Greece.  But generic forms of drugs work just as good as brand names.  I think the points are good, but he success of any surgery will show in time,not 3 weeks after.


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Simon


Senior Member

Status: Offline
Posts: 124
Date: Thu Jan 24 2:26 AM, 2008
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Hey Simon,

I am really happy that you are searching it and you ask questions.You are trying to weight things here and thats the thing every patient should do.

The machine i think its KeraCure and it is cutting edge technology.For the drops i am not quite sure but the machinery for crosslinking is considered among the best.As for the riboflabin drops ask him what is the difference between the german and the one he has.

Dr Mark Swanson is he American or from Mexico?Anyhow he has treated 150 patients and thats good news for you because i think he has enough experience.Also,i have read that the partial Epi-off is made by installing some liquid drops so the bonds to the epithelium becomes more loose and the riboflabin enters more.

All in all,you are well prepared for your discussion with the doctor.How is your vision acquity now?Do you function like me without glasses or contacts?Because you said you have done some form of PRK.You also need to ask that if the curvature you have gave to the cornea with the PRK will change after crosslinking.Another important question that.Moreover i think that your previous Doctor should consider more to perform the PRK but ALSO together combined with THE CROSSLINKING as Doctor Kanellopoulos is doing.Because as i have understand with you you wanted both treatments but you have to go to two different doctors.

All the best,


P.S I think TOPO-PRK and CROSSLINKING combined together are a great solution for stupid Kc.

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Posts: 35
Date: Thu Jan 24 8:22 PM, 2008
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Too many facts to weigh.  I guess at one point after all the research, one has to just jump in and hope for the best.  Especially with a relatively new procedure like this one.

I have again asked for clarification on the drops.  I even invited Dr. Swanson to join us.  That would be great.

Im not sure if he is American. He does have an office just north of the Arizona border, but the Cross Linking and Intacts he performs in Mexico.

My visual acuity is fine.  20/30 in my left eye, 20/40 in my right eye post PTK.  It was 20/400.  However, my urgency for the Cross Linking is because I keep getting worse ghosting every month.  Last year, I had no ghosting. Then a little, more and more and now, at night I see 2 or 3 images below the main image.  Hopefully, cross linking will stop this, maybe make it a little better.  Once the ghosting progression stop (hopefully) I will be trying the specail soft hard contacts.  SYNERGEYE. I have tried them and they are the only lenses that take away most of the night ghosting.  SO there is hope for me to reduce this effect going forward.

You raise some good questions and I will be sure to ask.

My previous surgeon Dr. Sylvia Norton has good history treating KC with Excimer laser.  She calls it PTK.  Therapeutic laser. Not PRK.  Her website has good descriptions on it. She has been doing it for almost 13 years and has treated about 70 eyes.  Im not sure, she might be too conservative to try Cross Linking until THE FREAKING FDA gets off their asses and approves it.  Its so easy to sue a Dr. here in the USA, most of them try not to get to out of the traditional medical system, even if it works.

Cheers, and I will keep posting as I get more info and once the surgery is done.

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Simon


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Posts: 35
Date: Thu Jan 24 9:12 PM, 2008
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Again, here is the latest from the Dr.'s Office

hello simon

the riboflavine that we use is from the same Germany laboratory. we buy it in Europe.

riboflavine base 5mg
derived from riboflavine sodium phosphate

sincerely Geraldin



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Simon


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Posts: 47
Date: Fri Jan 25 7:08 AM, 2008
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simon123 wrote:


Its so easy to sue a Dr. here in the USA, most of them try not to get to out of the traditional medical system, even if it works.





It's the same here in Canada which is giving me so much grief with a referral for out of the country medical coverage! NO ONE WANTS TO REFER ME AND SIGN IT! So much for health care for people who really need it. I will not give up the fight!!!!

-- Edited by cloudd at 07:09, 2008-01-25

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