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Post Info TOPIC: Heath's Story & questions


Veteran Member

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Date: Fri Dec 29 12:52 AM, 2006
Heath's Story & questions
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Hello everybody


I live in the United States and was diagnosed of Keratoconus 6 monts ago...I had -10D approx in both eyes


I got my X-linking done in Dresden-Germany on Nov 23rd


The procedure was the same as described in previous stories by jan and valeri, that is check-up---epithelium incision---uv rays and riboflavin


The only difference, I hv noted is that there was no use of therapeutic lenses, during epithelium growth or thereafter. There was no info given to me about it.


The major hurdle was the language barrier. It hampered everything starting from the initial email communication to the treatment process. The doctors and staff can talk in english but its not enough to clearly express themselves  and due to that they only give out extremely concise information devoid of explaination.


Also, I think since the clinic in Dresden has now conducted this on several people ..they treat it very casually, which also caused some problems. by this I am trying to say they are treatin it like ne other routine procedure


Some of the big mistakes were


1. At the end when I was leaving for america on the 27th..they gave me 2  drops one in vials and the other in regular bottle .. and said one was for dryness and the other was for inflammation. They did not tell me which was which. My eyes were closed at that time and my companion was not that smart to ask. And everything on them is written in german..so pretty much nobody in america recognizes them.


2. I had both eyes done... they gave me a letter for only the left eye, which caused trouble travelling in the airline as they dont allow to travel after invasive eye surgery .. for which I could not travel onward alone to India as I intended to go to my family, had to buy a new ticket for a horrible price on the spot and come bak to USA with my friend who accompanied me. Later I had to use help frm my german friend to get in touch with them and procure the letter for the other eye which they scanned and sent promptly. as it was required by my employer.


There was other itsy bitsy things which irked me but not really worth mentioning.


Recovery part:-


I had very low vision for the first 2 weeks and was extremely photophobic. I got my eyes examined and could get a partial 20/40 with -10Ds correction beyond this with glasses was impossible. I was using a soft toric -6.5 lens before the xlinking with which i got 20/40 vision. I did not move to RGPs as I was going to get xlinking done soon.


Its like 4 weeks post-op I am still a bit photophobic..but vision has improved greatly and I can drive and use the computer for small times with x-large fonts. I have a appointment on the 5th of jan for get topographies done, will post the link as soon as i get them.


My Question


1. How does the therapeutic lens help. I am currently wearing glasses, wll they help in somehow getting better vision?


2. What kind of monitor settings should I use. Should I go low resolution or is it possible to go high resolution with larger fonts. I am currently on a 19 in ch screen with 800x600 resolution and 126dpi fonts. If nebody knows how to make it bigger and better for eyes please inform.


3. How long should I wait before trying lenses. The Docs at dresden dint tell me anything about that and I forgot to ask.


I think I have stretched my computer usage limit...will write more later


Thanks for all the help.


~Heath


 


 



-- Edited by Heath at 14:18, 2006-12-29

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Regards Heath


Executive

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Date: Fri Dec 29 2:20 AM, 2006
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Hi Heath!!!!

Great to hear from you! The procedure is behind and it's recovery time. I think you did real good. Let me try to answer some of your questions.

1. Therapeutic lenses are used for 1-2 days post op only. Then they are taken off. I had it when I did it in Dortmund. it is optional. Dr. Kohlhaas, for example, thinks it is not necessary. His coleage thinks it is more comfortable for the patient. When I did one eye in Dresden I did not get them. And in fact I felt no difference, with or wihtout. They cover the abrased cornea. They are fully transparent. They give no optical correction. In this way epithelium grows beneath the lens and the eye lids do not bother it.With or without it it is was painful, the same lacrimal activity.

2. The vision is low after the procedure forr 2-3 weeks. It is corneal haze. Google on "corneal wound healing" and you may see what it is.

3. Topical steroid drops (the ones for inflamation) may be used to modulate this inflamatory process. It is an option. I used them for one eye (the Dresden one) and found beneficial. I did not use it when I was in Dortmund. I think I had to. n Dresden, I was given the same two types of drops: one for refreshing, one for inflamation.

4. The refreshing drops are almost all the same artificail tears: it is the phisiological serum, or, basicaly, low concentration NaCl solution.

5. Haze goes away in the folowing months. It is a question of 2-3 months for it to disappear to almost invisible for the eye level. But it will be visible in slit lamp analysis.

6. Cornea will continue to flatten but very-very-very slowly.

7. It is a good idea to try new lenses only in 5-6 months post op, because during that time corneal surface is liable to changes. You may try before that time.

8. My measures show that 1.5 and 0.75 years post op I've got thicker and flatter corneas. Quite a bit thicker (about 50 microns each) and a bit flatter (1 D each). The morphology of the conuses has changed also a bit.

9. It is a question of patience. As you know you can not get much vision improvement, for the procedure is not aimed at that. What you get with it is the stabilisation of your corneas. As well they become more riigid. Say, normal corneas have rigiidity of 11. keratoconic corneas have rigidity of 6-7. Crosslinking gives you the rigidity of 9. And it appears to be enough to stop the progression.

10. It is a question of patience also because it takes years to appreciate the effect. It is a long term story.

11. Try ro keep a track record of your corneal topographies and pachimetry measurments. try to do it twice a year. Remember that ultrasonic pavimetry and orbscan pavimetry give different numbers. For us KCers, Orbscan gives smaller numbers than the ultrasonic one. The ultrasonic one is more true.

12. If you need lenses, it may be that the fitting will be more easy.

13. I have only one eye like yours, about -10 or -11. But recently i discovered that my year 2000 glasses give me a lot of comfort. of course it is not a perfect correction, far from that. But it is like 1/10 -> 4/10. Having the other eye close to the normal, I do not wear lenses.

14. The worst is behind, my friend.

I wish you a very happy new year 2007!

Regards,
yarsky




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yarsky


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Date: Fri Dec 29 2:15 PM, 2006
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Thanks a lot Yarsky for your detailed reply, it answered most of my questions, Happy new year to u 2 and everybody on the forum.


Just one more detail, I have to join work on the 2nd of January.. I work in the supercomputing industry, and using the computer is neccessary for me for atleast 8 hrs/day if not more. 


 As you said lenses should be worn only 5-6 months post-op...but thats a really long time,will wearing lenses earlier than that affect the recovery process or be harmful?


 


@yarsky - I read on the forum somewhere that you work in IT..so was wondering how did u cope with your job?Any special tips on that would help.


 


Thanks a lot



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Regards Heath


Executive

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Date: Fri Dec 29 3:49 PM, 2006
RE: Heath's Story & questions
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Heath,


1. I have one eye that has the visual capacity close to the normal one. When I did crosslinking to it last April I had a contact lens on the other eye. I had two weeks off. In two weeks, even with haze, I could start to work, using, so to speak, either the eye with the lens as the basic eye, either use the hazy one as the basic eye, putting the lens aside. I did the second thing. I asked for a bigger screen (19") and more light (in 1 month you are no longer photophobic and corneal sensitivity, if I remeber correctly, is as before).


2. As you have both eyes low, I think you may need lenses. There is one guy on this forum from Geramny, Tim_OS_78, who asked for new rgps in 1 month post op, if I remeber correctly. You can ask for lenses as early as you want. Before doing that try all your old stuff including glasses. You may find it better than without nothing.  Otherwise, I admit, it is difficult without lenses if you have both eyes low.... You'll find a solution. You should know that now your corneas are stronger 


Best regards,


Yarsky.



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yarsky


Phase Two

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Date: Fri Dec 29 4:30 PM, 2006
RE: Heath's Story & questions
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Hi there health, thanks for all the detail you write, we want to know everything!


The main problems with Keratoconus is,


1) Its progressive by various degree's


2) It causes irregular astigmitisum


These two problems is what makes us need complex, continued changing contact lenses of the HARD type, to give us the vision we want.


With X linking progression is "zapped" and you will get a more regular shaped cornea ...so on both counts X Linking is just the ticket...


...this new more regular shaped cornea will give the best possible fitting contact lens for you, and on a strenghtened cornea. One of the main problems is to try to fit a contact lens on a irregular cornea, so that a good fit can be had... this is so that scarring of the cornea is stopped from the hard contact lens. Steep fitting hard contact lenses are better to reduce scarring, but then a regular cornea will improve vision and fit even more ...so being the best optimum option, with out the need for many visits to be fitted to get a decent veiw from your contaqcts etc.


I watched a video presentation where a Surgeon was saying that if the cornea was regular and had a cone... it could be corrected with glasses, by however much, to get to the driving standards pretty much... but those glasses would be thick! ... also a regular contant lens would work pretty good, on a regular cornea!


As a hard lens on an irregular cornea does NOT give a good fit as much as if the cornea was more regular. Also, this new regularity will help with the vision you get when correction is appiled.


And so regular soft toric lenses i feel could be used better than if you used them before you had X Linking done.


I know Valeri went to be fitted for contacts well before five months had passed after his treatment. But each time the fit would change, so he knew that his corneas was still flatterning. There will be no harm in trying contacts sooner... it may just mean you may need to keep getting fitted for new ones.


And so yes... Health use what correction you need to use... but only time will tell what form it will be in six months.


About the antibiotics, well a Dr was telling me that the UV used kills "the bugs" ...thats a helpful additional feature!


On other news I wanted to tell everyone... I learnt that X Linking has gone to south america and the carribean countries, "its the next best thing to happen in Keratoconus" says a MD I was speaking to. When you must remember there was NOTHING before.


We managed to change the future! ...for newcomers and veterans, we supported the Dr's trying to break up the cartel who was keeping us in the old medical loop!


Anyway, I'm working on a few thing with Keratoconus medical personnel, who I can only call "world class"... which again needs us to get it anywhere!!


Keep us posted, we will be here!


Happy old years eve! ...thats what it is today As tomorrow is new years eve! ...or called Old Years Day



-- Edited by QuintriX at 19:31, 2006-12-30

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Date: Fri Jan 5 3:46 PM, 2007
RE: Heath's Story & questions
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Update


I went for a eye checkup today ... the doctor said I have the same readings as  before its like -15D  on both eyes ....so its not really good news .. its like 43days post op now. :(:( was a bit dissappointed.  I will post the topography soon as the docs place was out of color cartridge. 


He said he saw some corneal haze.


Dint get pachymetry done, as I dont like the instrument touching my eye. :) will get it done after 5months


Cost me a fortune 2.


Lessee...


I guess Xlinking wasnt that effective in my case.


hope it has atleast increased the rigidity of the cornea.


Ciao!! :(



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Regards Heath


Phase Two

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Posts: 484
Date: Fri Jan 5 5:20 PM, 2007
RE: Heath's Story & questions
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Heath... Just to reassure you... This is nothing new, its been seen for steepness to actually rise before it falls back to pre-existing levels and further during the recovery time of six months, this has been noticed already (The first crosslinking congress reported this and it was confirmed in the second one). You are stil very early in your recovery Heath and doing well.


Get passed the three month mark, you will see some more changes, but your corneas wil change up to six months post op, going the right way in regularity, after the three month mark, haze should go by then as well.


X Linking is to stop progression, not to correct vision, doing X Linking earlier is better, as thats how its being used to avoid advanced KC and all that it brings. Advanced cornea's get more regular and a regular cornea gives better vision/fit when correctioned with contact lenses.


I hope time goes swifty in the meantime... and  I hope your boss is understanding... if not... give me your HR's email address and I'll run things by them..



-- Edited by QuintriX at 21:37, 2007-01-06

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