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Post Info TOPIC: Blogging my experiences.


Veteran Member

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Posts: 29
Date: Mon May 26 4:20 PM, 2014
Blogging my experiences.
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Hello everyone,

I thought I would share my story with you all in the hope that I get some opinions and understanding with my story. After much obsessing about the whole keratoconus issue with my family I thought I would share it with the people that will relate to me as my family cannot understand.

I am a 27 year old chap from Nottingham, UK and was "officially" diagnosed with keratoconus about 1 month ago. About 4 years ago when I was just finishing university I began to notice that my vision had started to slightly distort, yes the classic symptom. After having an eye test with the helpful folk at Asda the optician informed me that I was sub-clinical - for the life of me I cannot remember what my anatomical symptoms were? - in my left eye. My right eye was perfect and continues to be so. After enquiring about glasses the optician said there's no point as your right eye will compensate for any deviation. The man was right, I did not notice my sub clinical kc at all, in fact, if I didn't have had an eye test I would not have ever known as at that point the difference in visual acuity was minimal. So, I just plodded along and everything was fine.

This continued to be the case for the next few years until really the last 6 months where I began to notice that the presence of ghosting. I was aware of this old chestnut but because I was sub clinical I was not too bothered, I just shrugged it off and got on with things and hoped it would not happen to me. As time progressed my overall vision (which until this point was mainly done by my right eye) began to fault. I was noticing the gradual un-alignment of lines and I was having to focus more on objects for overall clarity as my left eye decides to let the team down. My ghosting became steadily worse, I was noticing a gradual increase in vertical ghosting. Depending on the contrast my ghosting I would say was average, sometimes its very pronounced others its not. I get quite anxious about large open spaces as I know the increase light getting into the dodgy eye is more pronounced, therefore my ghosting is quite severe.

After feeling like enough was enough I decided to go to the opticians just to get an update. I knew I already had KC but I just wanted to know to what degree. Well, the appointment came and my optician confirmed it was KC, only very mild using standard testing. I thought the guy was having a laugh as my ghosting by this point was very noticeable at short distances. After reading 20/50 uncorrected and 20/25 corrected I was told my vision is fine in terms of refractive power.

Let me say, this is my biggest annoyance so far with the whole experience. Due to my focusing power being good and my ability to make out letters (which my brain reads not my eye, KC sufferers will understand), I have been told that my vision is fine by my girlfriend and family and I would love for them to see what we see, just so they can appreciate it. Sure Its relatively clear, but two worlds being mixed then placed on top of each other isn't my idea of 20/50, hence my sheer annoyance with the snellen chart and KC.

Weirdly enough, one thing that I am still baffled about is my actual prescription, I believe my left is something like -1.25 and -0.5, which yes is very good, and very very veeeeeeeeeeeerry oddly is the same as it was when I did my first eye exam years ago, I guess I always assumed that would deteriate as well. Well, I was referred to the QMC in Nottingham who did all the tests and the consultant was very good, who did finally diagnose me as having KC in the "early stages" and "mild" in the grand scheme of things.

I did feel as though when the subject of CXL came up (by me) it was shrugged off as if to say, well you aren't on course for a transplant so lets leave it. I cannot help but think that  costing is the only reason that it's not done on all kc sufferers through the NHS on the grounds of cost (in terms of eye health)/benefit. Also he explained to me why my ghosting is more prominent which is because I have a low cone with an axis of 145. So, not being central I can enjoy the refractive power of a robot so long as I accept I will see it a few times over (counting my blessings). My cornea was 493 microns thick as well which I was happy with as I felt like it's been caught relatively early considering my late diagnosis (my own fault).

I left the QMC feeling very happy, yes my sight was crap but at least the actual health of my eye was pretty good, for that I was happy. I booked an appointment at Specsavers and got some contacts fitted. The softs made no bit of difference, the toric (which I am currently wearing) is better, it corrects the astigmatism but visual clarity is slightly worse. These guys are annoying, I don't like having them in and sometimes I leave them out as I prefer the breathing sensation on my eye. I have another appointment booked for next Friday where I will suggest an RGP lense which I am told is fantastic by two other KC sufferers at work as it drastically improved their vision and totally got rid of all those annoying ghosts and halos. I would like to know if this is what other people experience as I do not have a clue what the general consensus is?

I also had a phone consultation with an NHS specialist/private moon-lighter a few days after my NHS appointment who suggested for the time being wait 6 months then we will review with the possibility of CXL and TCAT. Over the past few weeks I have noticed that my ghosting is getting worse even though my clarity (in the right situation) is still good. My overall vision is getting more affected by the ghosting now to the point where my general happiness is taking a hit. I have booked myself in with the NHS/moon-lighter for the end of June to get another review even though it is only 2 months after my initial to have a serious conversation about CXL with TCAT. From my research, it seems the best option, laser correct your eyes, reduce visual ablations and stabilise your KC? What's not to want? 

So, I shall wait until I see the chaps over at Sheffield where my private consultation is booked for. I am at the point now that I can tolerate a visual deteriation as a side effect of CXL with TCAT as long as my condition stabilises. I do not want to wait by for 5-10 years and watch it degenerate as I know it will before the NHS decide to perform CXL. What is other people's experiences? I know TCAT is a strong option but my main concern is ghosting, I just want them gone. am I being too ambitious? Will an irregular low cone with good central refractive power that is essentially shaved off put me in a strong position to achieve overall satisfactory-good vision by conventional standards? A lot of you are probably thinking "wait till you get an RGP lense lad that will sort ya out", but I do not want to. I do not want to mask the issue, I want to tackle it head on and get all the opinions and see what my options are, I refuse to sit back and slowly watch this condition affect me anymore.

Your opinions/comments are more than welcome, and I thank you for taking the time to read my monograph :)

Best,

Jon

   



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Executive

Status: Offline
Posts: 155
Date: Mon May 26 5:44 PM, 2014
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Jon,

Follow your gut feeling...you are right not to wait around and seek out your options.

With RGPs, it works for some and not for others, there could be pain, you can have good days and bad days with RGPs or contacts per say, it takes time to find the right lens and fit to get the optimal vision and comfort, and there are risks with them too, which often do not get discussed. But if they work, they work great.

Most treatments work better if they are done early and the treatment is less complex as well. There is no one treatment that works for everyone.

See what your private consultant tells you and then take it from there on the Tcat plus CXL approach.

Take a list of questions with you as you always wished you asked something when you have left!

Wayne

 



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Veteran Member

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Posts: 73
Date: Mon May 26 7:08 PM, 2014
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Your corneal thickness is very good and your kc is in the early stages.

This is important as many go in to contacts not knowing their corneas are getting worse while wearing them over time, as contacts push back the "cone" and you need to leave your lenses out for weeks (its longer for RGPs) to get a topography done to check for progression (as your cornea needs to "unfold"). This is hard to do if you can not see without contact lenses.

You can become reliant on contact lenses and your uncorrected vision can go down.



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RobyneJ

Date: Tue May 27 10:19 AM, 2014
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Jon, I was diagnosed with KC when I was 13, that was 39 years ago. On the 14th of this month, I had my 4th corneal transplant (both eyes have been done twice) and am probably going to have to have another done in my left eye. KC runs in my family, four other family members have also been diagnosed, but no where to the degree of thinking that I am experiencing. The one thing I have learned is you are the authority on your vision. Sure doctors can analyze the results of the various test they perform to determine the best treatment, but only you can determine if that treatment is giving you the vision you desire. Currently, I'm wearing a RPG hard lens in my left eye. Some days everything is fine and u can go the entire day without a care in the world, seeing everything u need to see. Other days, I fight to keep the contact in my eye (the lens usually wins and I have to take it out). It took two months of going to the optometrist on a weekly basis before it was determined that the current lens was the best fit I was going to get. My optometrist was very pleased and satisfied, me not so much. I appreciate the difficulty in fitting me and all that had been done for me. However, through research, I know there are other options available to me that would allow me to have clearer vision. So I have become an advocate for myself and when I go to see my opthomalogist/surgeon, I go armed with my research with the intent on having a discussion/conversation about a treatment plan that I want to explore. If you feel strongly about a treatment plan for your KC, do your research, then advocated strongly for yourself. Don't accept someone else's option of the visual clarity you should be satisfied with on a daily basis. And you're right, it's hard to explain to others the frustration of not seeing what we know everyone else is seeing. I wish you the best of luck, look at all options available to you and fight for the best shot you can possibly have with your degree of KC.

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Georgiagirl

Date: Tue May 27 12:18 PM, 2014
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Being that you are in Europe you have a big advantage. CXL originated there and has been practiced routinely for years. Through my research I found that doctors there work under the philosophy of the sooner you stabilize this debilitating condition the better. I've had KC for 23 years and it has been a daily struggle. The extra work that my brain performed daily trying to see was very fatiguing. I always wondered what was wrong with me. I didn't feel like a lazy person but comparing myself to others I felt they had so much more energy. When Dr. Cummings explained this to me it was such a revelation. Here in the US most doctors don't even know about CXL!!! Please do your research and decide for yourself. But I wish I had options years ago! Here's good luck to you!

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Anonymous

Date: Tue May 27 12:46 PM, 2014
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Thank you for all your comments and advice. RobyneJ I was sad to read your story but I admire your resilience and I think it's great, albeit setbacks, that you can achieve good vision with RGPs on occasions. From my very very limited experience, I can say that the only person that listens and who wants the best vision for me is my contact lense specialist at Specsavers. I remember her saying to me, "Jon if you are not happy then I am not happy". This filled me with confidence. The NHS seem to tell me about my vision which is why your comments re: we are the authority of our own vision is a powerful statement.

 



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Posts: 29
Date: Fri May 30 7:38 PM, 2014
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Hey everyone,

Had my contact lense appointment today at Specsavers. Great news is that still no sign in my right eye fit and healthy. Wahey! Left eye no biomechanical change inside the eye even though I have bulged in the last 2 weeks with more ghosting. But I informed her about my appointment at the Sheffield Vision Centre and she agreed its the right move.

As regards to what lens now, well we are going to leave it out until the appointment, apparently she (specsavers) do not have the best equipment to do a proper RGP lense with topographical consideration to the extent that Sheffield can so we both agreed that I will come under the care of them going forward. Had my literature come through the post from Sheffield regarding CXL and TCAT and I'm honestly excited by it. She still maintains I'm clinically early and mild so hopefully the sooner I get booked in the sooner I will see some good results and hope to get by with glasses (my best case scenario).

Also had a chat about my rugby playing, gym-going, and weight gain over the past year and we both agree that this is what's sparked my KC from dormant to progression. So I will see what the consultant says but I already feel it's the right move. Just hope my CXL and supplementary treatment whether Tcat or customised RGP is done quick enough.

Best,
Jon

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Date: Fri Jun 20 6:14 PM, 2014
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Afternoon everybody,

I hope this message finds you all well. I had my private consultation at Sheffield today. Nothing short of exceptional. Great customer service, facilities, technology, staff were fantastic. Thoroughly recommend. As for my eye, well clinically, from recalling my trip to QMC, the KC has not progressed in the last two months even though my visual symptoms have deteriated. We spoke about the rugby, weight gain, and weight lifting and he does not see this as being a factor within my progression so I am good to continue with next season which is fantastic!

As for treatment, he believes the conservative approach. His methodology was as follows: Intacts > if progression shown CXL > 1 or so year down the line TCAT. I was very surprised by this method as I have not read about it. But I guess logically speaking it is very sound, conservation then if progression is shown CXL. I feel more confident with this team as opposed to QMC as price was not an issue with regards to treatment options. He explained the pros and cons of everything. I trust this mans opinion and currently considering it as an option.

Has anybody else heard of intacs, cxl, then tcat? Or indeed had it done.

Best,

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