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Post Info TOPIC: Need to Xlink - Heath


Veteran Member

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Posts: 31
Date: Wed Oct 11 3:59 PM, 2006
Need to Xlink - Heath
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Hi everybody


I am in the process of getting an appointment setup at dortmund to get Xlinking done.I am a student at the University of Mississippi in USA and am having extreme troubles to cope up with this disease. I use soft lenses which correct my vision to a workable situation.


I have advanced keratoconus. I am trying to get in touch with the German clinic at dortmund, since I want to get it done by Prof Kohlhaas.


My topographies and doctors notes


http://home.olemiss.edu/~girdhani/hitesh1.jpg


http://home.olemiss.edu/~girdhani/hitesh2.jpg


http://home.olemiss.edu/~girdhani/APR24.tif


http://home.olemiss.edu/~girdhani/Diag.tif


Till date this is what has happened


- Trying to get websites n contact info. Google doesnt help at all( or I dont know to use it) to find the german website. Thanks to Yarsky for providing the links.


- I use the email form on the website(using english)


    http://augenklinik.joho-dortmund.de/index_kontakt.html


      - Get no response.


- I send email using my regular emailclient( using english)


      email address :augenklinik@joho-dortmund.de


      - Get no response


- I ask a german student to email in German


     - Finally, get a response. I am asked for more information and am supposed to pay all the medical expenses in advance. Also, I am informed that they have ppl who can talk in English with me


 


- I agree to pay all the money, send another email with topographical scans as attachment through my German friend


      - Get NO response!!


- Tried calling the clinic using the number on website.


    0231 / 1843 - 2241


    I get a reply that number does not exist.


- Currently, got another email address off the weblink http://augenklinik.joho-dortmund.de/index_keratokonus.html. I am requesting my german friend to send another email to


Ines Pilorz
─rztin der Augenklinik
ines.pilorz@joho-dortmund.de


Requesting a phone no. so I can talk and setup an appointment.


- Last resort will be  going to send a CD with my topographical scans and stuff and a printout via FedEx to Dortmund


I dont know what I am doing wrong. Its, pretty frustrating. Also, I dont have any family here in the US and might have to go alone to Germany to get it done. I am scared as its so hard to communicate now, how will it be when I get there.


 


These r my about to Xlink experiences till now.


 


- Heath


 


 



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Regards Heath


Phase Two

Status: Offline
Posts: 482
Date: Wed Oct 11 8:29 PM, 2006
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I will chase it up for you health.... I think the distance involved means that you should either stay longer to recover or take someone with you... you know that it can take one month to six weeks for the haze to dissappear after the crosslinking... so its not a quick thing to do abroad and you are very far away from home. Another thing is that due to the success of crosslinking so far they are taking a lot of patients where the logistics in care can be given with out a doubt.


I was told that they do get overseas visiters both at Dresdon and Dortmond but you may be the first from the US, so you must make sure you have support being away from home that far away.


You could try Dresdon, they are very experianced all round and for many years, so they have things geared up for longer.


All the best for now and keep us informed. 



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Veteran Member

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Posts: 31
Date: Wed Oct 11 8:39 PM, 2006
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I also tried emailing Dresden no response from them either . I thought Prof Kohlhaas has the most experience and that he has moved to Dortmund. Thats the reason I am trying to go to Dortmund

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Regards Heath


Phase Two

Status: Offline
Posts: 482
Date: Wed Oct 11 9:03 PM, 2006
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Yes that is right Health, although Prof Kohlhaas do not actually physically with his own hands do the proceedure, he trained up surgeons to do it when he got promotion and is the head of the department there.


Dresdon on the other hand, they have all been there for years.


I think get the email for "Sandra" at dresdon, she's the one who deals with crosslinking on the front line for patient contact.


Have a look through the dresdon site and its under their staff contact list.


I really don't know why you guys over from north america is having trouble, there is more than likeliy a logical explaination.


Did you know london is swinging!!! when it comes to crosslinking!!!... I was invited to a lecture there on KC & X Linking ...it was excellant... the truth we have unraveled here was what they unvailed at the lecture and presentation!!!


London felt like to me the center of the universe, last night when it came to KC!! ...I could not beleive it... it was like a dream... so many professionals deeply interested in KC in one place!!



-- Edited by QuintriX at 03:23, 2006-10-12

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Executive

Status: Offline
Posts: 437
Date: Wed Oct 11 10:52 PM, 2006
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Hi Heath, I do not know why is that. In-advance payment is a bit strange even to me. I do not know. Anyway, remember, if you do both eyes at a time you will not be able to put back your lenses sooner than 1 week. This is the time the epithelium closes. But cornea rests ruther sensitive. So probably it is not before 2 weeks post op. Well anyway, it is no less than 1 week. In this case, if your vision is not enough to do things, you'll need help. To adopt new lenses it is better to wait 5-6 months, for cornea changes during this time. I pmed you smth. With respect to Dresden ask Jan for he was there recently!
Regards,
Y.

-- Edited by Yarsky at 23:08, 2006-10-11

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yarsky


Phase Two

Status: Offline
Posts: 482
Date: Thu Oct 12 4:52 PM, 2006
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I got a message back from Prof Kohlhaas himself...


He said there has been no problem with anyone else emailing or phoning from abroad to the hospital, and they get a lot of patients from around the world coming to Dortmond.


The email and phone numbers are the right contact details.


But they do have a spam and virus filter's at the hospital, so something in your emails may be getting it filtered (it can happen with out warning and for no apparent reason as they use german filtering software)


So basically there is should be no problem, but i think you should make sure you phone during GERMAN office hours, since you live in a different time zone, so the german out of hours voicemail don't kick in)


All the best



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Phase Two

Status: Offline
Posts: 482
Date: Thu Oct 12 5:56 PM, 2006
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I forgot to add... check your using the right international dialling code and you may have to drop the leading zero to the telephone number to the hospital when calling internationally to that number.

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Veteran Member

Status: Offline
Posts: 31
Date: Thu Oct 12 7:13 PM, 2006
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I did drop the leading zero, basically I tried all kinds of permutations and combinations possible to get it right. anyways will look into it again.


Thnks for all the suggestions n prompt replies guys.


I have one more question.


I work for the supercomputing department and its kinda hard to get leave from work coz i am on probation as I just started wrking. So, Wht time do u think I will be able to resume working after Xlinking. Does 1 month of haze mean not able to work??



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Regards Heath
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