All of us Vs Keratoconus

Members Login
Chatbox
Please log in to join the chat!
Post Info TOPIC: My Keratoconus


Senior Member

Status: Offline
Posts: 107
Date: Mon Nov 14 10:37 AM, 2005
My Keratoconus
Permalink   
 


 


kc was diagnosed when i was 13 , i was doing well with one eye that is my left eye which did not need correction till 1992-93 , i used to wear spec  which did not give me 100% good vision but my auto-refract-or reading used to come over 6.00 cyl and when i used to wear my spects one could see wrinkles on my forehead as i used to strain , my wife particularly pointed this out , i was given rgp's to wear once or twice by my doc before in my teens which used to give me much of photo phobia (intolerance of light ) and since my left did exceptionally well i had decided to avoid contacts, only on insistence of my wife i began wearing rgp's from 1994 , which gave me a lot of relief regarding vision part , i had constant complaints of lenses popping out when my doc started to give me a little tight fitted lens ( steeper curves) those created abrasions because the lenses were not special keratoconus rgp which are comparitively thinner , my fault was that i should have gone to   some better corneal institute (which northern India is lacking )at that stage but i stuck to this one doc who is our family eye doc , as i thought he must be well exposed to international breakthroughs like piggy backing etc , he did not guide me at anything till 2003 when i met someone in my optical trade ,he gave me FOCUS Plano soft lens by ciba and asked me to wear them under my rgps , man it was a blessing in disguise for me .
from that day i stopped going to my family doc but started going to Delhi for my refraction and fittings .
in 2004 i had a bit of more deteriorated eyesight but due to one reason or the other i could not go to Delhi instead i wore my previous measurement of curves of my rgp's
in sept 2005 i had some severe but tolerable
pain in my left which is my better eye . the pain started from my eye but traveled to my forehead, i could see a bit of blueness under my cornea , i thought it must have been due to some tightness of lens, hour passed by when i thought of going to some other doc to whom i used to visit pretty much after that ignorant experience with my old family doc , the doc was absent but his junior was there who diagnosed it as a slight tear in the descimet's membrane , in other words hydrops , the danger sign , i was asked to put hypersol 5 which is an osmosis procedure , this medicine has a specific amount of sodium chloride which sucks out water, which leaked in through that tear in my cornea due to excessive expansion in kc .
on third day i went to the same doc who said i was fine as the pain also had diminished he was pretty surprised how did i get healed so fast as usually hydrops are very severe usually the tear is quiet severe , the eye swells and the lens becomes opaque and it takes months for a person to recover and in my case it was not thank god . this was the alarm bell
this doc advised me to wear sclerals , a rather difficult procedure , on talking to a few ppl in my optical trade i got to know that there is just one doc in northern India near new Delhi who makes sclerals , from my heart i wanted something more latest which i thought must be available other than that age old fenestrated sclerals (sclearals with holes for oxygen to pass ) someone told me about Boston scleral lenses with liquid bandage which interested me but its price tag of 7600$ worried me .
when i visited Delhi the docs there took me for a ride and told me you need a corneal graft for sure as i was having hydrops  which was not there at all( microscopically) my endo is scarred this can happen and that can happen , it worried my family quiet a bit , but we reached this decision to go to south india to  take an opinion                                                                                       i went prepared that i was definitely gonna come under the knife for sure , to my surprise they said no to graft instead they made me try Boston lenses which i tried and were good in comfort , this eye institute has a tie up with boston eye foundation  and they recieve these lenses directly from boston  , they are responsible and may change till you get a perfect fit  they have been ordered and are expected to come shortly


the price tag is not the same  as it is charged in the u s the foundation has tailormade a package for me according to my affordability






-- Edited by Vikram at 06:21, 2006-03-31

__________________
Anonymous

Date: Mon Nov 14 11:48 AM, 2005
Permalink   
 

Your story Vikram was a very interesting read, I am sure others like Eapen would be very interested in exchanging info. with you.


Scleral lenses are good as even for some the thought is that they should be the first choice for keratoconus as no part of the lens touches the weakened cone area and there is no moving around of the lens.


Keep us informed of your progress and I'm so happy that you resisted a transplant even when there was some sort of "push" for this by the specialist you was seeing at the time.


Your options now are greater than at any time for a kcer!! So please spread the word about crosslinking over there in India. You know its a cheap and effective treatment and so can help for places like india where costs for your average kcer are much more than usual.


Hopfully as more Doctors know about this treatment, someone will bring it to India. And of course there is mini-ark, lens impants and F/I Rings as well, which are just waiting for the right Doctor to find them.


All the best mate and take care 



-- Edited by QuintriX at 20:48, 2005-11-14

__________________


Senior Member

Status: Offline
Posts: 107
Date: Mon Nov 14 2:59 PM, 2005
Permalink   
 

 doctors have ressisted to take me in for surgery and said what looks like hydrops is not it ,


what impressed me most was the realistic non invasive approach , explanation  of the post surgical complications which may arise and complexity in follow up ,  surgery  they said should always be the last  open option , it is irreversible.


they said that a graft has a period of life which maybe is not forever and possibility of kc even after  graft


[url=http://imageshack.us][img=http://img229.imageshack.us/img229/3361/lva9ya.jpg][/url]


this is the report which my hospital has given whch explains everything


                               



-- Edited by Vikram at 06:47, 2006-03-22

__________________


Executive

Status: Offline
Posts: 397
Date: Mon Nov 14 5:13 PM, 2005
Permalink   
 

Thanks for sharing your story Vikram,
Its very pleasing to hear that your doctors found an alternative to you having PK... Please keep us informed as to your progress ... I agree with Quintrix that your options as a kcer have greatly expanded in recent months, lets hope your doctors are as well informed as you are.

Regards,
Hari

__________________


Senior Member

Status: Offline
Posts: 121
Date: Tue Nov 15 10:35 AM, 2005
Permalink   
 



Thanks for the info on Boston Scleral Lenses being made available in India through an Eye Hospital.

Definitely better than meeting an optometrician with no proper clinic !

__________________


Senior Member

Status: Offline
Posts: 121
Date: Wed Nov 16 10:58 AM, 2005
Permalink   
 

Vik - I am really grateful for the effort you put in to help other fellow KC-ers. It was nice talking over the phone & a great eye-opener.

Thanks for the same. Another one for Quin for taking strides to contact me.

Imagine last month when I visited Sankara Nethralaya Hospital, Chennai the senior corneal surgeon told me that the only option left for me for the left eye is to 'go under the knife' again - the task which you took great pains to avoid.

Never knew Fenestrated Scleral Lenses were 'an age-old design'. Lucky your family business & profession helped you to identify that.

The optometrician who tried to fit these to me retorted that it is a relatively new design (- for luring me to pay an hefty advance towards lens trials - poor me which I did !. )

We should educate other fellow KCers not to fall into this fenestrated-trap. (deep sh%#ty one )

-- Edited by Eapen at 13:13, 2005-11-16

__________________


Senior Member

Status: Offline
Posts: 107
Date: Thu Nov 17 1:30 PM, 2005
Permalink   
 

you are the second person to call me vik after Dr Rajbir Singh my Guru a retina specialist out here who is always asking me to eat sufficient amount of Vitamin C quote " good for healing and cell stimulant" we Kcers + cl wearers are prone to abrasions. The person who said Hey Vik its time to think for Sclerals , i am giving this letter to you for Dr V k Dada former head of opthmology in R P Institute, AIMMS . Go take advice from him . Vik is on his toes all set for journey to Delhi holding a boarding pass left my city


clinical head of bausch and lomb , india informs me about the  trial set which an optometerist in delhi has lately got  and about an optometerist in mumbai  who is doing kc fitting  this opens more frontiers  for me . i meet my cab driver , whom i engage whenever i visit delhi, he reaches the hotel i check in , knows my tastes and liking  end of first day


         on seeing my topography which was performed on a pentacam a doctor in delhi  said its time for a graft look at the corneal thinning , look at the keratometric readings , see your cornea has +6.00 reading and -4.00 readings just millimeters away shows how uneven your cornea is , we are doing grafts in our hospital , but the best place is Hyderabad. i asked if she was familiar with Rose Lenses , she replied they are quiet theoritcal , you can try them , they are available here (same place where clinical head bausch and lomb told me )


having a lump in my throat about surgery part my innerself did not agree with her decision about graft as i was not that much a sufferer or was i getting used to the complexity of my situation , at that instance i forgot Dr Rajbir told me l  " hey vik sclerals"


i went to the concerned optometrist who had Rose lenses , when i sent  my businesscard he came out from his chamber like a gentleman and took me personally in .


    when i was made to try the Rose k lenses i found 6/6 vision in r/e (my worseeye) and 6/9 vision in my left eye  without ghosting , which boosted my moral  'YES'


 


 



--

-- Edited by Vikram at 06:54, 2006-03-22

__________________


Senior Member

Status: Offline
Posts: 107
Date: Sat Nov 19 7:40 AM, 2005
Permalink   
 

 I went back to the optomtrst who had wavefront laser and told  him about boston sclerals , he said he had never heard about them i showed him the net results , he gets excited  at the new findings , how funny is this situation  it is him who is supposed to tell me about the findings whereas i am  telling him  about boston sclerals . 


                                  . we are forging ahead with the second largest population in this world . why not a broad spectrum thinking . why are we confining our thinking limited to daily activities , how could one miss Dr Rosenthials  contribution ." the lens that made blind see" (words used at oprah winfrey show ) 


  



-- Edited by Vikram at 08:41, 2005-11-19

__________________
1 2 36  >  Last»  | Page of 6  sorted by
 
Quick Reply

Please log in to post quick replies.

Post to Digg Post to Del.icio.us

www.kcfreedom.org

Knowledge Works