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Keratoconus my story by Christian, Malaysia

Written in

February 26, 2014

Dweezil

Hi, my Name is Christian. and I’m new here. I am male, 29 years old and I live in Malaysia. Here is my keratoconus story:

As far as I can remember, I started wearing glasses at the age of 14. back then it was only L:0.5D, R:0.25D.(astigmatism) with no far or nearsighted, we all thought that it was normal. I wore the glasses until I was 16 years old.

A few years have passed (2005), and I stopped wearing my glasses because they make no difference to my vision but at the same time I often became dizzy, with blurry images etc. So I went to a normal eyeglass store to get myself new glasses. The guy said that my astigmatism is quite high. L:2.5D, R1.25D, (Pure astigmatism). Walla! my vision feels better! no more headaches, dizziness.. for now….

Almost a year since I got my new glasses, my vision slowly blurred away again. and at some point, I again stopped wearing my glasses.

2007 and I have another pair of glasses and the reading was L:4.75D, R:2.50. I was like, okay, why does my astigmatism keep increasing? No probelm whatsoever with short or farsightedness however. I also start noticing that I had double vision, shadows, ghostly kind of image (even while wearing my glasses). My thought was, most probably this is the symptom for moderate astigmatism? (4.75D)

To cut it short, I again stopped wearing my glasses early in 2009. And I kept questioning to myself, is it increasing again? At this time around, my vision worsened. I was only dependent on my right eye, which is also blurred but slightly better than the left eye.

I was then constantly checking up on my eyes, and the readings slowly increased. Driving at night is very stressful, often with headaches, eye stress, watery, and itchy eyes! Even at 20-30 meters away I can’t recognize my own mom! Yet.. I still don’t wear any glasses!! so probably.. its time for me to go for proper eye checkup, and find out what is really going on here.

So 2011 – and the first eye specialist I’ve met with. The Doctor says that, ‘there’s something wrong with your cornea. it is bulging and not normal’. (I was shocked by this but intrigued) but he continued ‘I do not have the proper equipment to really check it thoroughly’ (like I knew what equipment he mentioned). He suggested that I go to West Malaysia (DANG!!! I’m in East Malaysia) for a further check up. Problem is….. I don’t have the money, so I didn’t go…. I recall that the Doctor did mention something about ‘hard lens’ and ‘surgery and not to do LASIK. (Doctor didn’t mention it was Keratoconus back then, and so.. I just kept this to myself.. so yeah I have an ‘eye problem.. but what eye problem?’

Very super rare high astigmatism? That it is soooo rare that my eye bulges out? I am now L:5.25D R:3:75D

Then in 2012 – I meet up with a second so called “Eye Specialist”. Same eye check up as the previous doctor. This Doctor says “Your eyes are great!! don’t worry about it! You just have very high astigmatism, that’s all! And wearing glasses should solve your problem!’

Then he also said -‘Oohh! or I recommend you to go for LASIK. we can do it here! (What the hell?! So which is true? Can LASIK help or not? I am confused. I have some more headaches. (facepalm)

I still do my routine eye test, and its getting worse still: L:6D R:4.25D

Reading the paper or books is a struggle. My eyes itch, I am still stressing with both eyes + constant migraine headaches. The light reflection is the worse thing! Whoever a person is behind any lights, the person’s head / half body is like its gone. It is a “ghostly” image.. which is scary and I get the super rare ability for memory (kidding!) I memorize the road from my home to work. Even at night, while can’t see clearly, I at least know where the curves are, water and pot holes are. Unless, if there a new hole and carcass there, I would just hit it.

2013 – I am still surviving and still kicking! Yeah! I’m engaged (congrats to me!) and I still do my regular job, and driving / reading / gaming etc (sorry, didn’t mention earlier, I do electronics and computers) just imagine what life in my shoes is like.. seeing small electronics component with your current eye sight (L:6.75D, R5.50D). Yet.. I still do not know what my “eye problem” is.. so.. this year I met up with 2 eye specialists, but the “1” eye specialist is blood money sucking earthling! (in my opinion).

I met with this specialist ( <— this is the bad egg). He acted like a specialist.. some kind of a pro. and took less than 15 minutes for the eye check up. Doctor saad, “Boy, what are your concerns? Your eyes are perfectly fine, only you have high astigmatism. I recommend you for eye LASIK! it’s very good! ” and I said ” Doctor, but last time I had an eye check up, Dr xxxXXxxx did not recommend LASIK because my eye cannot do LASIK because of the very unusual high astigmatism. The Doctor said, “Eeeerrrrrrrrrrr, hmmmmmmmmmmmmm, I “think” nowadays LASIK should be able to cure your eye. Give me money and we together can go and fix your eye”. And that’s it! End of conversation.. I don’t quite trust anyone when they do “errrrrrrrrrr” “hmmmmmmmmmm”

So on 1st December 2013, I get new glasses. L/R both 4D. The optometrist said that I cannot go higher with the lens prescription because he is afraid that ‘you will get headaches’ (might be true) so I stick with 4D with transition. (Deep inside I think I got scammed). They at least help me a bit.

Okay.. my eyes itch and water right now when writing this. For my last optometrist, the same check up as previously but here, they have the “I do not know what they call it” scenario. They ask you to concentrate on a red dot then the “thing” goes spiral for 5 sec. I was like.. omg.. my eyes hurt and my head goes round and round and round…. . but it just for few seconds. The result came out in paper.. some kind of like red, greenish orange, like a geographical map. (I now know it was a topography).

When my result is up, the doctor explained in a polite way “let me run another test on your eyes” and I said Okay. Then he said ‘sir, I diagnose you with an uncommon eye disease (uhuhhh.. uncommon eye disease?). You have Keratoconus eye disease.

For so long I’ve been wanting to know what my eye problem is, and now, thank god I know it is Keratoconus! My eye still needs to be review every 6 months to see whether it is still progressing or not. So, for the time being I do some research, I study what Keratoconus is, and I found a KC Community. Thank You all for your best support for us, KC’er. I will give my best in anyway to share any info about KC and my result. Now, I have my info, so question is.. when.. will I get my clear vision back? waiting….

Thank you all for reading… I know my English is bad.. I tried my best.
End of story (or To be continue?)

Christian

12 responses to “Keratoconus my story by Christian, Malaysia”

Sulaiman

February 26, 2014

I want to know ,
Where are you main branch ?
I mean i can come to you for you cheak my eyes .

Reply
1. Dweezil1968
  
  February 26, 2014
  
  Where are you? If you join us on Facebook or twitter we can help you get kc treatment. Search #keratoconusgb
  
  Reply
Annika

February 26, 2014

Dear Christian, thank you for sharing your Keratoconus Story. I was diagnosed with KC one year ago and my story is very similar to yours. You ask when you will get back your clear vision. I’m really sorry but it will never come back. Didn’t your Doctors tell you that? KC is an eye disease which can’t be healed. Nobody can say, if the KC will stop or if it will grow further. If it grows, your vision will even get worse. But there is an eye surgery in Europe and the US which is called Crosslinking (CXL) which can stop the KC from growing. The KC and your vision can be “frozen” at the stage they have on the day of the surgery. I don’t know if this surgery can be made in Malaysia, but I’m sure you can check this on the Internet. I wish you all the best for you and your life with KC! Greetings, Annika

Reply
1. Dweezil1968
  
  February 26, 2014
  
  Whilst it’s true there’s no cure for kc it’s not true to say that vision cannot be improved. I had a graft and a cataract op in one eye and now I don’t need a lens in that eye at all. Only 1 in 4 need a graft
  Christian should be wearing contact lenses to improve his vision and they will be a HUGE improvement on the glasses he has now
  
  We can never give up and we can have good vision
  
  Reply
2. Dweezil1968
  
  February 26, 2014
  
  I do agree though that cxl is worth investigating to see if the kc can be stopped at the stage it is at now
  
  Reply
3. Christian G. Abel
  
  February 27, 2014
  
  Thanks Annika. im surprised that my KC abit different from others. i have no far or short sighted problem. only my astigmatism is very unusually high. i do not know how to read topography nor the Dr explain any of it.”Dr say i have KC, u can find more info through internet. your next review within 6 months” that is all i got at that time. i need to travel to other state for further check up. Thanks to Marco Bos, i obtain my lead. For all these years, somehow, i get “used” to my eyesight.Dr gave me an eyedrops. it sure helps. i don’t mind getting few more months / years researching. probably by then, there might be new technology that could treat KC patient.
  
  I never wore any contact lenses before because:
  1. im afraid i might get eye infection
  2. im careless
  3. after reading alot of comments, expenses might be very high. 😦
  4. Had to travel to get my eye power description before can make any lenses. in my state, no specialist can do that.
  
  I’m tight on budget.. getting married this year (2014).
  
  i will get in touch with USJ Optometrist (Kuala Lumpur, Malaysia), Mr Darren. will post any updates on my progress.
  
  Wish you too best of luck!!
  
  Reply
  1. Dweezil1968
    
    February 27, 2014
    
    Christian contact lenses will be life changing. You won’t get eye infections if you clean them properly.
    You have your prescription you just need a lens fitter someone who knows about kc lenses- and there’s many types to try, this will end the eye strain and headaches that you experience now. Really worth considering.
playingthehandiwasdealt

February 28, 2014

Hi Christian,

The cost of having keratoconus is a lot here in the US, too. My insurance won’t cover the lenses and they’re thousands of dollars here, but I can’t really wear them as I have severely dry eyes so I hear you about all the money (that I don’t have). Also, I used up nearly all my savings to get cross-linking (CXL) and we pay so much here as it’s in clinical trials. Why does everyone think the US is go great? Lol! I, too, strongly recommend that you ask the Dr. in Kuala Lampur about CXL as it is available about everywhere but the US (aside from trials) and I would presume a city like that has a doctor performing it and it’s always much less money abroad. I actually get a lot of Malaysians on my blog, so there must be good KC doctors, just not where you are exactly. Anyway, CXL has so far stopped my progression (both eyes) and I got some vision back–mainly less ghosting. The thing with CXL is that if you wait, it can be too late to get it. It is recommended for people who are not advanced and still progressing (and a few other things need to be looked at and measured, like corneal thickness).

Also, I didn’t develop KC until my 30s and it took forever to get diagnosed due to the “so called eye specialists” and your story sounded a bit like mine, so I’m glad you didn’t take their advice on LASIK. Way to go! I lost all the vision I did within 2-3 years and it was so frustrating as glasses only worked in one eye for a few months and I progressed so rapidly. I even had a CXL doctor try and rip me off! Lastly, if it makes you feel better as far as being a KCer, you do have a bit of farsightedness (+) in one eye and nearsightedness (-) in the other. It’s very mild, but that’s the sphere (SPH)–see paper with your prescription. I think we all have prescriptions that look very different, even though we all have KC. 🙂

Good luck and keep us posted (and your English is just fine)!
A

Reply
1. Dweezil1968
  
  February 28, 2014
  
  Great points there. Cxl is definitely worth asking about as are contact lenses.
  
  Reply
Vasi

March 1, 2014

sorry about your situation… here in Romania CXL is cheaper, something like 1000 dolars, both eyes. If the KC progres is better to do CXL as fast as you can. What stage KC is? from 1 to 4. I have 1 on right eye and 1-2 on left eye.My KC progress slowly so I believe that I will do CXL in a month or two, just to stop de progression

Reply
Christian G. Abel

March 5, 2014

Hi playingthehandiwasdealt! I’ll certainly pay a visit to your blog.. hope can find some more lead there.. me also make comparison of my topography with others KCer, but i do not understand at all.. thanks again!

i’m currently busy with my daily life.. sorry for no response lately.
Here goes.. some of my updates so far.

I haven’t contacted USJ optometrist yet, bet my luck on few well known optometrist around my area. unfortunately, all unable to help me..

My hope rely on the only one Eye specialist that i dealt before.. my next review on May.

For the time being.. i take a deep breath.. telling myself i’ve been dealing this situation for years, why not add another 2 months? shouldn’t be a problem right?

btw.. anyone here can read / know how to explain topography?

Later then..

Reply
1. playingthehandiwasdealt
  
  March 5, 2014
  
  Hi Christian,
  
  You can just call me A–it’s a lot shorter! Also, my blog is more about my personal journey with KC and the big disease I have that caused it, so very different from this blog with lots of KC folks but you’re always welcome. I have categories at the bottom so you can find posts about my KC and my CXL, but my posts are a little weird just to warn you. 🙂
  
  I’m not a fan of waiting with KC because mine just showed up one day and within a year or so, I went from normal vision to 20/100 vision (nearsightedness, farsightedness, and irregular astigmatism) and I really can’t wear lenses more than 10 hours a week and they don’t help parts of my vision. If I were diagnosed right away, I would be in a much better place after CXL and could wear glasses like I did for 3 months. My case wasn’t normal, but CXL saved me from getting worse and needing transplants and if you wait (and are progressing) your corneas can become too thin or too steep to have it done and you just lose more vision while waiting. Just my thoughts though and not sure how fast you’re progressing.
  
  I found a site that I can’t blow up well, but there is a doctor who does CXL in Malaysia and there are several locations if I read that right (my laptop is adapted for my vision, but it’s not great). Here’s the link: http://osnapao.healio.com/i/109148
  
  As far as interpreting topographies, they sometimes look different due to the brand of the machine. Mine look different than yours, for example, as it was a Tomey machine. I do know that mine shows the K-readings, which tell the steepness of the cornea’s curve from different degrees and also the severity of KC and a few other things. My K-reading in my worse eye (right, or “OD”) was 51.45 @ 100 degrees, which I believe is the max steepness, so about the same as yours, but the bow tie in that cornea had more red and yours has more pink and pink is steeper, so not good (I believe these all use the same colors to indicate steepness). My K-readings improved in both eyes post-CXL. My astigmatism is shown as “cyl” and was 5.16 D pre-CXL in my right eye, but I think the refraction had it at around 6 something, so the topography might not be as accurate as a refraction. Your astigmatism is at 7.3 D in your left eye (“OS”). Well, that’s a few things I know and hope are correct as I’m not a doctor, but have to act like one in my city. I don’t have my topographies on my blog because they’re like a finger print and I like to say mean things about my terrible doctors. Haha! 🙂
  
  I’m not on Twitter, but that might be a good place for more specific questions. I think there’s a link on this blog–not sure how that works.
  
  Take care and try to look into the ophthalmologist in that link. The CXL is done using the Dresden protocol, which is the same kind I had in the States and what was developed in Dresden, Germany in ’98, so the best and highly effective. It’s also known as epi-off CXL and this is what is done in Europe and will be approved soon (we hope) in the States. Also, as Vasi said, I’ve seen CXL at $800-$1,000 USD for both eyes in most of the world (aside from the US, Canada, and Western Europe). It’s usually between $2,500-$5,000 USD for ONE eye in the States which no one can afford!
  
  A
  
  Reply