All of us Vs Keratoconus


Members Login
Chatbox
Please log in to join the chat!
Post Info TOPIC: KC partner


Member

Status: Offline
Posts: 7
Date: Sun Jul 29 11:09 PM, 2007
KC partner
Permalink   
 


hello everybody,
my name is mariya and my boyfriend is a kc sufferer.he has got his keratoconus since he was 19 years old,that means 10 years and more all together.recently he had crosslinking done on both eyes.right eye (better one)was done on 18/06/07 and left one was done on 25/06/07.there is more than a month since then and everything seems going well.he says he feels his vision as before.this week we are going  to see the DR and i really hope he will have good news.i am a bit worried because we don`t know how long he won`t be able to wear contacts for,and i`m affraid it could take months.he stays at home whole day long every day and it makes him nervous and hopeless.we went to see optometrist last week and we ordered spectacles.hopefully they will be good enough to make him feel more comfortable.
i am not sure yet if we stoped the progression of KC but i belive we did.my boyfriend is still in doubt but i try to encourage him all the time.
if there are other people who support their friends and family  and who read this forum it will be great to share our experience as a supporters.

  all the best
  mariya

__________________


Senior Member

Status: Offline
Posts: 124
Date: Mon Jul 30 9:06 PM, 2007
Permalink   
 

Hello mariya.From your post i see you are a very wonderful person.You give love and care to your boyfriend and this is the sweetest thing in the world.So,collagen cross linking is the evolutionary treatment nowadays for kc and in my opinion and the doctors opinions from all over the world who are dedicated and free of financial interest any person who has keratoconus or corneal ecstasia and generally corneal thinning not should BUT must perform collagen cross linking.Only the parametry of corneal thickness should be at least 400microns.But Dr Theo Seiler,our little GOD,who has found collagen cross linking knows some techniques that you can perform cross linking even if you like for example 370 microns close to 400microns.

All in all,i am not here to tire you at all,but you MUST say to your boyfriend that when you perform collagen crosslinking your cornea is like 300% more stronger than before!!!Also you freeze the motherf*** kc sorry for my expression but sometimes something gets me..;p!You freeze the cornea and you want to remain stable.

I am sure he has done the best investment of his life by performing Collagen Cross linking.Like Yarsky has been Wisely said ^He is out of the cage^.I have performed it now 4 months and asked my Doctor that in all of his patients KC has stopped!!and believe me he has treated a lot.So,kc as my english friend says is a less worry for him.In 10 years maybe we will need a retreatment but it is being investigated.Topographies should taken at logically time but kc for him belongs to the past.He should now think what glasses to wear or contact lenses.I would advise him to wear glasses.Contact lenses is a thing here and you may need to here a lot of opinion whether are good for the cornea.My english friend told me about the whats is called high index aspheric glasses.Anyway,i am a bigmouth i might say but thats ME!lol.

Best wishes.

__________________
nothing else matters


Executive

Status: Offline
Posts: 437
Date: Mon Jul 30 9:52 PM, 2007
Permalink   
 

Hi Maria!
I think your boyfriend is doing fine! Normally one month after the op, one still has some corneal haze. As for the lenses, all stories I heard tell us that the pre-op lenses do not fit any more on post op corneas. All depends on how far has the KC gone, how steep are the cones.  First, does he really need lenses? If he does, try to fit the new ones. What in fact are his visual acuity? 1/10? 5/10? 8/10? The better and the bad eyes separately? I think that if it is not below 5/10, lenses are not nesessary and one must try to fit glasses....Anyway, my personal experience with lenses is that lenses, the rgps, are extremely uncomfortable and mean suffering. But whatever visual capacity he has, it will remain still for the years to come.
Regards,
Y.

__________________
yarsky


Veteran Member

Status: Offline
Posts: 39
Date: Tue Jul 31 12:20 AM, 2007
Permalink   
 

Hi mariya,

Welcome to the forum. I too, like your boyfriend has KC for around ten years. I'm 27 now. My vision is pretty good and don't only wear correcting lenses for reading, watching tv and work. I had corneal crosslinking done last Friday week 19/07/07. So far, as it is only a week and a half, my vision is still blurry but will improve back to normal vision within a month. I really couldn't be happier now that I have had the treatment. I hope your boyfriends fears of it not working will go away. The FACT is that Corneal Crosslinking DOES work.....The very best of luck to you both.

__________________


Member

Status: Offline
Posts: 7
Date: Wed Aug 1 9:51 PM, 2007
Permalink   
 

hello again
thank you very much for your replies.you really made me feel better. today we went to see the DR and everything seems ok.the DR said that the right eye`s numbers are very close to those pre-op which sounds perfect and also he said he`s expect more improvement.and about the left eye there are no much change but still there is a change for good.
Yarsky you asked me for his visual acuity,here it is BCVA : RE 6/9-2, LE 6/7.5 And i don`t know why they are like 6/9 but no 5/10 and if you Yarsky can tell me i`ll appreciate this.also here are some more numbers:
RE sph -6.00;cyl +8.00;axis 128;LE sph -6.00; +6.50;axis 45
if someone can explain what that mean i`ll be very gratefull.
now we are waiting for the spectacles to be done and also we bought a pinhole glasses but they don`t seem to help much.will see if the spectacles will improve the vision and probably we will try for contacts very soon.
that`s all for now.i`ll keep you updated

best regards

mariya

__________________


Optometrist

Status: Offline
Posts: 67
Date: Fri Aug 3 12:13 PM, 2007
Permalink   
 

Hello Mariya - all the best to you and your boyfriend - his results certainly sound promising.
The visual acuities you state (BCVA = "best corrected visual acuity") are measured using meters. All UK optometrsits and to the best of my knowledge all European optometrists all use metric notation. Whereas US optometrsits use feet - usually expressed as 20/whatever. The standard eye chart testing distance is 6m or 20ft but in Yarsky's case the 10 would probably suggest a shorter working distance (ie. 10ft).

Anyway; as said, the first number in vision measurements denotes the testing distance. The second number bascially outlines the distance at which a "normal" eye could see this character. For example; 6/6 would mean at 6m you could see what a "normal" person could see at 6m (this also translates to 20/20 in US notation). 6/9 would thus mean you could see at 6m what a "normal" eye can see at 9m. Therefore, the higher the second number the worse the vision. The "6/9-2" means that your boyfriend can see the 6/9 line on the eye chart but missed/incorrectly idnetified 2 of 6 the letters. This is the simplest explanation I can think of, the actual notation is not derived from "normal eyes" but from the angle at which a limb of a letter subtends at the back of the eye. To go into this a letter "E" has three horizontal limbs and on the eye chart each of these whould be the same width as the white gap between the limbs. At the 6/6 line each limb/gap subtends one minute of arc (a sixtieth of a degree) at the back of the eye.

The second lot of numbers are his required glasses prescription/strength.

The first number ("sph") is the spherical component of his prescription. If preceded by a "+" (plus) he is long sighted (far-sighted/hyperopic/hypermetropic), a "-" (minus) he is short sighted (near-sighted/myopic). The second part ("cyl") is the cylidrical component, this is the part of the lens which describes the amount of astigmatism present. Astigmatism is usually the prevalent component in KC patients due to irregular corneal shape. I can go further into the lens types and strengths if you'd like but the physics of it all even bores me :)

To confuse things further most optometrists as far as I'm aware (myself inclusive) write prescriptions in a "minus cyl" format. If your boyfriend's prescription was written this way it would read
R: +2.00/-6.00x38 (SPH/CYLxAXIS)
L: +0.50/-6.00x135
but that's another story.

Hope that helps and doesn't confuse things further, any specific questions please ask.

Alan


__________________

We all love Leeds!



Member

Status: Offline
Posts: 7
Date: Sun Aug 5 11:34 AM, 2007
Permalink   
 

hello lad from leeds,
thank you very much for your answer and for the good explanation.now it`s easier to understand those numbers.also you said i can ask more questions if i need to.we consider to try to make contacts even they are gonna last few weeks.can you give us an advice what kind of contact lenses are the best for treated with crosslinking eyes.also do you work as an optometrist and can you recomend us a good optometrist in london(and not too expensive too).and where do you practice if so?
thanks again
all the best

mariya

__________________


Optometrist

Status: Offline
Posts: 67
Date: Sun Aug 5 8:06 PM, 2007
Permalink   
 

Hello again, I practise in the North of England - nearer Manchester and as said in my profile rarely fit KC patients. Reccomending lenses would be very difficult (and a little unprofessional) without seeing your boyfriend's eyes/records, silicone hydrogel is the newer - better lens material but with his prescription you will struggle to find suitable lenses. The 2 main choices will be bespoke soft lenses or RGP lenses. My first choice would always be soft lenses due to comfort, my experience of fitting "normal" patients etc but dependant on your boyfriend's cornea an RGP or hybrid lens may be more suitable. Find somebody who specialises in contact lenses - if he walked into my practise there is a chap nearby who I would almost definitely send him straight off to.

As far as optometrsits in London go I really wouldn't have much of a clue. An independant optometrist (rather than chain/multiple) may be better but then again may not - it differs from person to person. Ask your surgeon - he may well be aware of a practitioner particularly adept/experienced in contact lenses and KC patients. If not optometrists can "refer internally" (ie. to another optometrist) so I would say go to your current optom where possible as they will have history and records and if they are not comfortable then they should know of someone to refer to. City university may well be worth contacting but I don't know first hand, sorry.

All the best

Alan

__________________

We all love Leeds!

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