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Post Info TOPIC: Depressed KC


Newbie

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Date: Fri Jun 17 8:14 PM, 2016
Depressed KC
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Hi all am new here. Just want to share my experience and see if anyone can relate to. Im 33 male about 10 years ago i had what i know now as a bit of a panic attack and vision went blurry etc. I didnt know what was going on with me and went to doctor he said i could be depressed and put me on medication. This has gone on for years ive had foggy vision and felt anxious over the years but i put all this down to feeling down and anxious. Until a few months ago i went for an eye test for driving and the optician said i have KC. Im tired all the timr find hard to concentrate and do be exhausted after work each day. Ive been to a specialist 3 times but am waiting to get proper fit on lenses. My right is worse than my left even if i close my left eye and look in mirror its hard to make out who i am in the mirror. A lot of the time feel like i have no motivation to do things as i have headaches and feel so tired. Had anyone had these problems ??

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Date: Tue Jun 21 11:42 PM, 2016
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It is hard to say how someone might react to the visual degradation caused by KC. I can imagine not being able to see clearly, which makes it difficult to live life as you would like, could make someone depressed. But I am concerned that a doctor would prescribe antidepressants based on a diagnosis of "could be depressed." Also having a panic attack and vision going blurry don't sound like things that would have a common cause. But I am NOT a doctor.

Antidepressants can have some nasty side effects and they can be very hard to get off of. I would encourage you to see a psychologist who has a healthy skepticism with regard to treating depression with drugs. I am sure antidepressants are a big help to some people. But I also think they are over-prescribed as an "easy fix" for the difficult issue of depression. If you can manage whatever issues you have that lead to anxiety and panic attacks without drugs, I think you will be better off. If you do need drugs, you might still benefit from having the support of a psychologist so you can use the least amount of the most effective drugs for you.

Now as to the KC. KC is a difficult problem to deal with for an eye care practitioner (ECP). There are a lot of possible ways to correct your vision but no really surefire, works every time, for every patient way to find that solution. Unfortunately, a lot of ECPs will advertise something like, "Our office has extensive experience diagnosing and treating the most challenging cases such as: high astigmatism, keratoconus, post-surgical fits and presbyopic (bifocal) patients" without saying what "extensive experience" means. I can say, having lived with KC for almost 50 years, and having been seen by several ECPs who are world recognized authorities on KC, that there aren't enough people with KC for every ECP who claims to have "extensive experience" fitting contact lenses for KC to have seen more than a handful of KC patients. And I can say that even ECPs who have seen more than their fair share of KC patients will still have difficulties fitting some KC patients. I would say that, at a minimum, you should try to find an ECP who has a corneal topographer and fitting lenses for a range of specialty contact lenses, e.g. at least one rigid gas permeable lens design such as Rose-K, a soft lens design such as Kerasoft IC, and a scleral lens design. I would hope that they have at least 50 KC patients that they have fit and are currently serving. (That would probably translate to fitting one new patient a month and then monitoring and refitting as necessary, which I think you can see isn't really giving them a lot of experience.)

If you have insurance that includes benefits for "medically necessary contact lenses," asking the staff about how your benefits work and what they can do to get you all the benefits to which you are entitled will tell you a lot. The benefits these days can be quite good. But they are tricky to get. If an ECP really has "extensive experience" fitting contact lenses for KC, their staff should know how to present insurance claims to get the full coverage you are entitled to. The fitting is the trickiest part because it is so open ended. You might get lucky and be fit quickly with the first type of lens that is tried. Or you might have to go through many return visits and try a lot of different lens designs, which might require ordering a number of custom made trial lenses. Presumably a more experienced ECP will have less trial and error, but even the best ECP will have some patients that they have trouble with. Insurance companies aren't geared up to handle claims for attempts, only for solutions. So listen carefully to how an office handles the fitting fees for an initial fitting of a KC patient and how they handle the costs of any fitting lenses that don't work out. If they seem to have a good handle on that, then they probably really do have extensive experience fitting contact lenses for KC patients.

Understand that correcting the vision of someone with KC is a time consuming process. I doubt that ECPs make money on their KC patients even though your fitting fees and contact lens costs are much greater than an average patient. You want to find an ECP who enjoys the challenge of working with KC patients and has the "knack" for finding good solutions. As a KC patient, you are going to spend a lot of time with your ECP. Take the time to find one you like and who is willing to put in the effort needed to help you.

Good luck! Hopefully you will be able to improve your visual issues and this will resolve some other issues for you.

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GRS


Optometrist

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Date: Wed Jun 22 4:11 PM, 2016
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dubguy wrote:

Hi all am new here. Just want to share my experience and see if anyone can relate to. Im 33 male about 10 years ago i had what i know now as a bit of a panic attack and vision went blurry etc. I didnt know what was going on with me and went to doctor he said i could be depressed and put me on medication. This has gone on for years ive had foggy vision and felt anxious over the years but i put all this down to feeling down and anxious. Until a few months ago i went for an eye test for driving and the optician said i have KC. Im tired all the timr find hard to concentrate and do be exhausted after work each day. Ive been to a specialist 3 times but am waiting to get proper fit on lenses. My right is worse than my left even if i close my left eye and look in mirror its hard to make out who i am in the mirror. A lot of the time feel like i have no motivation to do things as i have headaches and feel so tired. Had anyone had these problems ??


I got depressed just reading JimKC's post.  I find KC patients an absolute joy to work with and find it to be a rather straightforward process - less of an art and more of a science.  But, I digress.

Dubguy, I really believe that struggling to see everyday can definitely lead to fatigue and exhaustion.  In my work with KC patients, I have found that many of them are using their eyes like zoom lenses to try to bring things into focus, often to little avail.  Focusing problems are common and can create headaches and fatigue.  I think half the battle is identifying the problem, and it looks like you are on the right track.  Try getting that vision improved and see what happens.  There is hope!



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Dr. G.

www.laserfitlens.com



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Date: Thu Jun 23 10:29 AM, 2016
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dubguy wrote:

Hi all am new here. Just want to share my experience and see if anyone can relate to. Im 33 male about 10 years ago i had what i know now as a bit of a panic attack and vision went blurry etc. I didnt know what was going on with me and went to doctor he said i could be depressed and put me on medication. This has gone on for years ive had foggy vision and felt anxious over the years but i put all this down to feeling down and anxious. Until a few months ago i went for an eye test for driving and the optician said i have KC. Im tired all the timr find hard to concentrate and do be exhausted after work each day. Ive been to a specialist 3 times but am waiting to get proper fit on lenses. My right is worse than my left even if i close my left eye and look in mirror its hard to make out who i am in the mirror. A lot of the time feel like i have no motivation to do things as i have headaches and feel so tired. Had anyone had these problems ??


 This sounds just like me. I'm 25 M and started noticing degradation in my left eye a few years ago. In the last 18 months it has caused intense headaches inc pain between my eyes and I have become incredibly sensitive to light. Like you I have trouble focusing, and end up almost going straight to bed after 8 hours at work sitting at a desk. 8 months ago I finally decided to do something about it. I went to Specsavers and was diagnosed with astigmatism and 3.5+ in my left eye, and the right was fine. The glasses were a slight improvement, but there was still significant blurring and ghosting. I was told that this was normal and it would take time for my eyes to adjust to the prescription as I had never had glasses before. I took their word for it, but months later decided they were having me on.

Just last week, after driving home from the supermarket at 9pm (with some difficulty) I decided to book an appointment to get it over with and have the astigmatism corrected with Laser surgery after hearing about friends' and colleagues' successes. Last night I had the appointment, and as you can probably guess due to my presence here, I was told I have mild KC in one eye (and faint beginnings of it in the other). It came as a bit of a shock, especially when I walked in there confident I'd be able to turn my back on my poor vision. I'm still getting into the literature, and coming to accept that the experience is going to be quite a bit harder. I'm a bit angry at the quality of my eye exam and the fact that it wasn't diagnosed then, but more so at myself for not getting something done about it at the very beginning. For the last 7-8 years I've had a very lax approach to my own health after developing a 'she'll be right' attitude when once accused of being a hypochondriac.

I know what your going through, I've felt exactly the same. For the moment, I guess I just have to take the pain (or, exhaustion). I can't have CXL until there is evidence of my KC worsening between now and my next checkup in a few months time. After that, who knows...



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Date: Mon Aug 8 7:50 PM, 2016
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Dr. G,

I hope you realize that you are very unusual amongst the ranks of ECPs. I am sorry my post depressed you. But I think you'd be far more depressed if you had KC and had to try to find an ECP with even 1% of your skill in fitting contact lenses for KC. I seriously considered spending a week in Texas with you because of my difficulties in finding a truly skilled KC lens fitter. Even though I have a pretty good solution using a Kerasoft IC lens, which I know you don't think much of, from time to time I do still think of visiting you. The only reason I am a proponent of Kerasoft IC lenses is because I think they lower the bar considerably for fitting a KC patient to get an acceptable visual correction and put the possibility of fitting a KC patient within the reach of many more ECPs. 



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Date: Mon Aug 8 8:09 PM, 2016
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Darkhorse,

If you need +3.5 in your left eye and nothing in your right eye, you have anisometropia, excessive difference in power between the eyes, as well as KC. Even without the KC, the anisometropia will give you problems. Resign yourself to the fact that you are going to need high quality eye care for the rest of your life. Specsavers and their ilk are not going to cut it for you. At least you found a refractive surgeon with the skill and integrity to diagnose the KC and not further damage your eyes with laser surgery.

I'd suggest looking into the possibility of being fit with Kerasoft IC contact lenses. You might only need to wear a lens in your left eye. You could use the "Find a Doctor" feature at www.kerasoftic.com/ to find someone who fits these lenses. I suggest Kerasoft IC because the fitting process is comparatively simple. They have trial lenses in the office so you can have a pretty good idea of how well they'll work for you without the need to order trial lenses. If you can be fit with contact lenses I think it will ease the period while they are monitoring your KC to decide if you are a candidate for CXL. And if you are not a candidate, you'll already be in contact lenses. There may be an issue of wearing contact lenses while they monitor you for possible CXL. Don't pursue contact lenses without first discussing it with whoever is monitoring for CXL.

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GRS


Optometrist

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Posts: 31
Date: Thu Aug 11 8:54 PM, 2016
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JimKC wrote:

Dr. G,

I hope you realize that you are very unusual amongst the ranks of ECPs. I am sorry my post depressed you. But I think you'd be far more depressed if you had KC and had to try to find an ECP with even 1% of your skill in fitting contact lenses for KC. I seriously considered spending a week in Texas with you because of my difficulties in finding a truly skilled KC lens fitter. Even though I have a pretty good solution using a Kerasoft IC lens, which I know you don't think much of, from time to time I do still think of visiting you. The only reason I am a proponent of Kerasoft IC lenses is because I think they lower the bar considerably for fitting a KC patient to get an acceptable visual correction and put the possibility of fitting a KC patient within the reach of many more ECPs. 


 That's unfortunate.  It would be nice to start a conversation on the optics of keratoconus and forget about the various contact lenses, etc.



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www.laserfitlens.com



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Date: Tue Aug 23 7:16 PM, 2016
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I'd be interested in joining a conversation on the optics of keratoconus if you want to start one Dr. G.

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