All of us Vs Keratoconus


Members Login
Chatbox
Please log in to join the chat!
Post Info TOPIC: EPI ON OR OFF... CONTINUED


Veteran Member

Status: Offline
Posts: 35
Date: Fri Dec 7 11:21 PM, 2007
EPI ON OR OFF... CONTINUED
Permalink   
 


Hello All,

It has been some months for me since I have been on this board.

I had PTK surface ablation surgery performed on one eye in March of 2007, in Syracuse New York.  I have bilateral Keratoconus.The results seem to be very good.  I had this done to improve sight and hopefully halt the progression, however I keep thinking about Cross Linking both eyes, just to be safe.  My vision has gone from about 20/400 to 20/30 on good days to 20/40, depending on how dry my eyes are. 

The ghosting effect in both eyes seems to be progressing slowly, but surely.  Last year at this time I had maybe on line of ghosting, now I have 3 to 4 images.  I think it's time to do the cross linking. 

My biggest concern with having Cross Linking performed the traditional method is the healing time which can be 3 months to 6 months, haze and obviously the pain.   If I go to Germany, I want both eyes done, but it seems that this is not advised, because the EPI OFF seems to create very poor vision for weeks if not months.  Maybe I am wrong.

I spoke with Dr. Boxer Wachler recently to  also raise my concerns about his method.   He tried to assure me that his method is just as effective.  They open the pores of the epithelium by applying some kind of solution to the cornea.  Recently they have published a study about the Riboflavin penetration and their proof that its just as effective.

I have had many doubts about this method too.  However, recently an artilce came out from Dr. Robert Pinelli from Italy.  I have attached it below.

http://www.boxerwachler.com/research20.html


I know that some European study suggested that the EPI ON did not work.  I don't know if this was done in the very early stages of the development of the surgery ( In the '90's), but maybe the EPI ON procedure has advanced somewhat...?  I wonder if the European study used a solution to open the Epithelium pores....  Maybe it was just straight drops on the cornea.

I would love to hear from any US patients, or Italian patients that have had success from the EPI ON.  I am not able to travel to Europe freely and I would prefer to do the EPI ON if it's advised. Please let me know if you see any major flaws with this new study.  I am still very undecided.

Wishing all of you a Wonderful Holiday Season.

Hugs and thank you for your past support.


__________________
Simon


Senior Member

Status: Offline
Posts: 101
Date: Sat Dec 8 8:21 PM, 2007
Permalink   
 

I see you keep asking the same question Simon as before, are you a spammer? spammer.gif

1) The study you mention is not peer reviewed, the epi on has been multiply
2) There is no mention of the epi on at any Congress timetable there are multiple for the epi off
3) The epi on has no FDA approval, the Epi off is CE Approved in Europe


-- Edited by Kreading at 17:37, 2007-12-09

__________________


Senior Member

Status: Offline
Posts: 124
Date: Sat Dec 8 10:39 PM, 2007
Permalink   
 

Evening,

Nice spoken Kreading.

Epi on or Epi off or other questions simply are irrelevant.And you know why?Because the doctor you will choose will support his theory and his practise.The xlinking machine he will use,the riboflavin drops,all the equipment you will need for the TREATMENT.

So,CHOOSE THE BEST.

For me the best is Doctor Kanellopoulos.

For an american citizen perhaps is Dr Boxler Waschler.

For an Italian maybe it is Dr Pinelli or Dr Caporrosi

For a Swiss citizen Dr Theo Seiler and his team.

The final choice is yours.Be advised though that the oldest scientific data about the stop/halt/freeze of keratoconus with the crosslinking ARE with the epithelium OFF.

__________________
nothing else matters


Veteran Member

Status: Offline
Posts: 35
Date: Sun Dec 9 2:53 AM, 2007
Permalink   
 

All good points.  Thank you,

No I am not a spammer.   I am a KCER. 

The 3rd annual congress had a whole afternoon dedicated to the topic, today in Switzerland. 

I don't know if the study I posted is true or not. it sure does seem like it though.   It does come from two very reputable Dr's.  However, I do know from speaking to one of them that the EPI ON technique allows the patient to return to normal life the very next day.  No haze, no pain etc.  At least that's what they say.  And if their study is true, then the Riboflavin seems to penetrate the same depth.  At least that's what their Flouroscopy pictures show.

It will be interesting to hear the notes on what they had to say at the congress.  Quintrix posted that the notes will be available to us at some point. 
One thing that seemed different in the study, was that the EPI OFF patients were noted to have or develop a Demarcation Line in the Stroma.  I am not sure what this is...  Or what it means.



__________________
Simon


Senior Member

Status: Offline
Posts: 101
Date: Sun Dec 9 6:13 PM, 2007
Permalink   
 

Where are your topo Scans?

And was Dr BW at the congress this year? (last year?) if not why not?

If your sure of the Epi off (and your Dr) why don't you do it?

-- Edited by Kreading at 20:12, 2007-12-09

__________________


Veteran Member

Status: Offline
Posts: 35
Date: Mon Dec 10 5:11 AM, 2007
Permalink   
 

Hello,

My Topographies are in the 45 to 55 range.  With at least 430 thickness.

I am not sure if Dr. Boxer was there.  

I will be making a decision in the next week or two.  I am going to try to see what came of the Congress.  I would prefer EPI ON, if I don't have to wait three weeks for the haze to disapear and the pain etc.  Plus the mysterious demarcation lines,,  I still have no idea what these are...

What was your experience with Cross linking?  Did you have it done... 



__________________
Simon


Senior Member

Status: Offline
Posts: 101
Date: Mon Dec 10 1:29 PM, 2007
Permalink   
 

Ok i'll ask again... where are your Topo scans, before and after your PTK?

Why don't you ask your Dr (Dr BW) if he was at the congress (this year or last year) and if he was not there... why was that?

And if your so sure of your Dr why don't you just have it?

How it generally works in society is you answer the questions that was put to you first!



__________________


Veteran Member

Status: Offline
Posts: 35
Date: Mon Dec 10 6:41 PM, 2007
Permalink   
 

Dear Kreading,

Im sorry, I did not see that you were asking for before and after Topos.  Your question asks for only Topos. I dont know the answer because I don't have them.  But my vision was 20/400 and now it's 20/40.  I can get them, but it would take some time.

Dr. Boxer is not my Dr.  I simply live near the clinic in Venice Beach, but I am a Native of Toronto.  I had my surgery in New York with Dr. Norton. I will ask Dr. Boxer why he wasn't at the congress when I speak to him.

My Friend, If  I was So Sure of his procedure, I wouldn't be hear on this Forum.  I don't agree with his procedure, but as a Scientific Researcher, I ( and I am sure others on this forum) are eager to hear about the new studies.  There is new evidence that UVA light transmits through the Epithelium and new evidence that Riboflavin soaks to the desired depths...  This is exciting..  And for the millions of patients that will be having this procedure done over the next decadeds, it's worth investigating.

Im not sure what you mean by your Society comment...If you were reffering to me( and Not Dr. B), then I will ask you to state your questions more precisely so that I can answer them exactly.

Thank you

Thank you

__________________
Simon
1 2  >  Last»  | Page of 2  sorted by
 
Quick Reply

Please log in to post quick replies.

Post to Digg Post to Del.icio.us

www.kcfreedom.org

Knowledge Works