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Rapid Vision Changes and first RGPs

Posted: Fri 10 Feb 2012 3:21 am
by mfergus
Hello all,

I am new to the forum but certainly not new to KC. I was diagnosed 4 years ago at 17, although I was aware of degeneration in my left eye prior to diagnosis. I have been, for lack of a better term, lurking on the forum for awhile now as a guest, and unfortunately haven't seen anyone with a similar problem to what I've encountered in the past year.

Six months ago I had sets of specialty hybrid lenses made (August 2011). My optometrist, who specializes in fitting KC patients, was unable to get a set with satisfactory fit and vision until late December, when we ordered a year's supply. I have had the typical glare, light sensitivity, and the other hallmark symptoms of KC for awhile, but began to notice more intense headaches than I had encountered previously, centered around my left eye (the more affected one). My ophthalmologist said that this could not be from the KC, whereas my optometrist said this COULD be a side effect of the contact lens wear. Both advised seeing a general practitioner to rule out any underlying condition. Like many others, I was given a clean bill of health. I have also experienced dizziness, nausea and insomnia, and I continue to believe that this is due to KC, although my doctors assure me that it isn't.

Around Christmas I noticed much much more intense light sensitivity, so bad that I had to take to wearing sunglasses all the time, purchasing several pairs of various tint levels. My frustration with my poor vision continued, as did the headaches and various assorted maladies. Eventually, I had a pair of glasses made as a "backup to relieve my eyes at days end" (My optometrist's words). I continued to complain of poor vision, but was assured that I could see "well enough," and that this was simply the nature of the condition.

As of 1/31, a checkup revealed corneal abrasions that the doctors claimed could be causing the pain, and told me to remove my contact lenses for two weeks, allowing them to heal. As a student, it's incredibly difficult for me to read regardless of the correction, and I felt that the glasses provided far worse visual acuity (I am blind in my left eye with glasses). However, my doctors assured me that this was in my head, and that my visual acuity was fine.

I continued to feel that my vision was poor, and returned to the doctor on 2/1, demanding a refraction. Refraction revealed that my prescription had gone up by a total of more than three diopters in both eyes, an increase of prescriptive power of over 150% for each. After having an emergency 1 hour lens fabricated so that I could prepare for midterm examinations, I was better able to see.

However, the next day (2/2) I noticed something strange. The ghosting became more intense, and the halos were becoming larger. Text became less clear. We called the doctor and said that the glasses were incorrect, but they stated that this was impossible, and that if I really wanted them checked, I should wait till after the weekend, although they assured me that it was just my eyes getting used to the increased power. However, when refracted again on Monday, we found that my right eye had increased by ANOTHER DIOPTER in a matter of five days. He didn't bother to check my left eye, as they've given up on correcting it. The doctor said that he had never seen that large of a change in a matter of five days.

Since having the new lens fabricated, I have noticed the same loss of visual acuity, but my doctors assure me that this is "normal." My most recent examination revealed a change of a 0.25 diopters, but this was within the "margin of error for two refractions." While the abrasions have healed for the most part, the headaches, light sensitivity and other maladies have remained. My doctors continue to assure me that this is completely unrelated to KC, and that I am able to see adequately.

Tomorrow I go for RGP fitting, but I have questions for everyone, namely -

Has anyone ever experienced a change this significant over this short of a time period?

If my eyes can't tolerate the soft contacts, is there any point in trying the hard ones?

I apologize for the extreme length of this post, but I am really struggling. I've had to consider dropping out of school because of this situation, and am fighting my doctors every step of the way. I've had to stop driving my car, riding my bike, and struggle to get around normally. I've also had to apply for disability at my school, and am as of yet unable to read standard-sized print. Additionally, the financial strain of this is huge - I've spent over $3000 (USD, yes, I am a yank) on vision correction in the past two months, and most of it is now outdated. I couldn't find any situations similar to this on the forum, so I decided it was advisable to at least ask.

Thanks in advance for reading my Gilgamesh-ian epic, and I appreciate any answers you may have.



Re: Rapid Vision Changes and first RGPs

Posted: Fri 10 Feb 2012 6:44 pm
by Anne Klepacz
Hi Mike and welcome to the forum,
I've moved your post from the Playpen to the general discussion forum where it will be seen. (The reason it didn't appear straightaway is that we try to stop spammers on this site by premoderating posts from new joiners - so apologies for the delay). I hope some of our experts will see your post. We're a lot better off in the UK as we're able to get our contact lenses from hospital eye departments at much cheaper rates on the NHS - not an option for you, I know. In some people, KC can progress very quickly. I had a few years when I seemed to need a new prescription every few months. Has anyone suggested collagen crosslinking to you to try to stop the progression? There are a number of clinical trials of CXL in the States, which they are hoping will lead to FDA approval. Is there any chance you could get on one of them? The KC Foundation in the States should be able to tell you where they are -
I'm a bit puzzled when you say you can't tolerate soft lenses, but are wearing hybrid lenses which are a combination of hard and soft. Another possibility is piggy backing - wearing a soft lens underneath an rgp.
Headaches and some of the other symptoms you describe seem to happen when there's an imbalance in the vision between the two eyes, and the brain is left working overtime to make sense of different images coming in.
If you were in the UK, I think I'd be suggesting you get a second opinion from another specialist. But I don't know how that sort of thing works in the States - I assume it involves yet more expense.
I do hope you find a better solution soon.

Re: Rapid Vision Changes and first RGPs

Posted: Fri 10 Feb 2012 11:25 pm
by Lynn White
Hi Mike,

I am an optometrist and yes I have seen your symptoms many times. As Anne says, headaches can be as a result of binocular imbalance and in fact rapid prescription changes can result from your focussing system going into overdrive trying to deal with all the weird vision your corneas are delivering to your brain and may not be actual corneal shape changes.

Additionally, the contact lenses you are wearing may be causing issues which are resulting in extreme photophobia, requiring you to wear sunglasses. This is borne out by the fact that you underwent extreme visual fluctuation after lens removal when trying to see through your glasses. This was due to the recovery from compression of your cornea from wearing your hybrid lenses. This is called "demoulding" and its very common to see even more drastic prescription changes than you describe here.

You haven't seen the exact same symptoms here before because each person has their own experience and describes it differently. However, as a professional, your story is very familiar to me!

If you were my patient, I would suggest cross linking, as Anne also mentioned, one eye at a time and rehabilitation post op in soft lenses. The reason your vision is fluctuating is that it is soft due to KC and very prone to being pushed out of shape by rigid lens systems. Once cross linked, the cornea stiffens up and is much more stable. However, in the US, you do not have easy access to this procedure.


Re: Rapid Vision Changes and first RGPs

Posted: Sat 11 Feb 2012 7:35 am
by mfergus
Upon further research, the lenses that my doctor assured me were "hybrid" may in fact just be the regular thicker KC specialty soft variety. Regardless, both my optometrist and ophthalmologist have stated that the corneal abrasions are from the soft part of the lens, regardless of whether they are hybrid or not.

I am looking into cross linking as it was recommended as an option by my ophthalmologist, and will definitely look into the trials. At this point my left eye is uncorrectable with glasses beyond 20/300 or so because of the high degree of astigmatism. My biggest worry with the cross linking is the time necessary to heal - being a student, unfortunately I cannot devote a significant amount of time to having less than stellar sight, and my university can only give me so much time off before I'm dropped as a registered student. It's distressing how disruptive this can be to your day to day life and I'm trying to learn to accept that there will be times when I may not be sighted and just have to drop whatever I am doing and deal with this condition. How long is the typical recovery period for cross-linking?

In other news, I tried the "hard" contact lenses for the first time today; it seems like these will give excellent vision provided that they can be fit comfortably and my eyes will tolerate them. I'm not getting my hopes up too much as my contact specialist who has been fitting KC patients for over 20 years said it was going to be very difficult to fit my left eye, and I may not tolerate the lenses. However, being able to read a vision chart quickly and accurately and not seeing the ghosts I am so accustomed to was an incredible experience - I'm hoping that they can figure something out.

Lynn, it is so so so very comforting to know that I am not crazy! Both of my doctors continue to tell me that these symptoms could not possibly be due to my KC, and assure me that none of this is characteristic of the disease. I wish you could convince my doctors that something is actually going on and that it IS related to the KC. I haven't noticed a huge change in the photophobia in the past two weeks, but at least I have an excuse to indulge in cool sunglasses.

Re: Rapid Vision Changes and first RGPs

Posted: Sat 11 Feb 2012 2:26 pm
by longhoc
Hi Mike

Totally separate from the medical angles which Anne and Lynn have already commented on, as for the financials, I take it that you've either not got insurance because you're still in education or else you've got a basic policy with horrendous deductibles which is almost as bad ? Perhaps if you could describe your situation in that respect in a little more detail I can give the matter some thought. One thing which jumped out at me was, in the absence of anything by way of firm information (so just my guesswork) in a year or two your situation will be different because you might be in employment -- and so have the benefit of a employer provided medical insurance scheme. You could get into issues around pre-existing conditions, but if I understand correctly, the healthcare reform which is being implemented in the US will reduce the insurance provider's wriggle-room substantially. Even if you're not going to go into employment, again, if I understand correctly the to-be landscape post healthcare reform implementation, you'd be enrolled into an insurance scheme and so get covered if you're not able to afford to buy insurance yourself -- do let me know if I'm wrong on this point.

Where I'm going with this is, with Keratoconus, it's tempting to leap into solutions with long-term implications based on short-term considerations. If you can obtain an acceptable contact-lens based palliative for a couple of years, it will buy you time until with a bit of luck you can fund, say, crosslinking. FDA approval for crosslinking is definitely a possibility in the next 6 to 18 months -- this will help enormously with the availability of the procedure. So again, you might simply need to buy yourself a little time.

Finally, one of the best descriptions of Keratoconus from a disability angle is that it is being "part time partially sighted". I've found that if I wait for the rest of the world to take the time to understand my condition, how it affects me and what adjustments I need, then, well, I'd have a very long wait. I've never found it easy -- but never regretted doing it -- to tell (not ask) people what adjustments I need and make sure they follow through on execution. I could at this point ramble on about my pet topic, the social model of disability but I'll spare you. Don't give up on getting what you want out of life because of Keratoconus.

Best wishes


Re: Rapid Vision Changes and first RGPs

Posted: Sun 12 Feb 2012 4:40 am
by mfergus
Chris -

Unfortunately I'm very well insured under my parent's policy (the cap was raised to 27, so I'm still covered for awhile yet), but the difficulty is in even getting the insurance to deal with and accept the treatments as medically necessary - they will cover one set of contacts or glasses per year (I've had a set of contacts already that ended up being out of pocket and three sets of glasses now, they only partially covered the glasses), and they refuse to bill my extremely expensive custom KC contacts as a "medical device" under the general health insurance. They continue to believe, after numerous letters from myself, my family, and my doctors that I'm using contacts for cosmetic reasons. It's a bit frustrating.

While future employment would hopefully include medical coverage, most insurance in the US doesn't really deal with KC effectively, so people with it are often stuck paying costs out of pocket.

I have been far more assertive about my needs of late, and have managed to get accommodations at school. If anything, my goals academically and in life have been increased as a result of this - I'm hoping to write an economic dissertation on the conditions and implications of long term and incurable diseases.

Finally, that was a fascinating article. I'll definitely be doing more research on the subject, and I appreciate the information - I'm a voracious reader and having just received access to the CCTV machines at school, have a few years worth of reading to catch up on :) .



Re: Rapid Vision Changes and first RGPs

Posted: Sun 12 Feb 2012 10:14 am
by Lynn White

Interesting....what solutions are you using with your current lenses? And if you could find out the actual brand name of the lenses I might be able to give you more targeted information.


Re: Rapid Vision Changes and first RGPs

Posted: Mon 13 Feb 2012 7:28 pm
by mfergus
I have been using the Bausch and Lomb BioTrue solution with my lenses, apparently it is very similar to the natural tear fluid of the eye, and to date has caused the fewest episodes of lens-insertion keratitis. I occasionally use the Clear Care disinfecting solution, but I've noticed that it almost always results in sever irritation - and I always leave it for much longer than the necessary 6 hour period required for the solution to achieve a neutral pH. I have just recently switched from the Optive Refresh Contacts drops to the Refresh Plus Preservative-Free drops - it turns out that I may be allergic to the preservative used in the standard bottle, and as I do get dry eye, I've been using the Preservative-Free drops every two hours instead. Unfortunately, once again, this gets ludicrously expensive as they're over the counter.

The contacts I was wearing were Walman Optics Keratoconus Flexlens Tricurve lenses. The interesting thing is that on the website for the specific lens, it states that the lens is "ideal for those who cannot adapt to a rigid lens material," and for "post-penetrating Keratoplasty." I never felt that these really gave me adequate vision, and interestingly caused abrasions on my cornea; one would suspect that a lens designed for those who cannot adapt to rigid lenses would be more forgiving on the corneal surface, but I may just be excessively sensitive.

Here's the link to the specific site, which includes links to an informative Resource and Fitting Guide: ... extrik.htm

Hopefully this helps you help me!