HI!! New to the Forum and need a bit of advice!!

[lauradal]

Hi
Im new to this group and need some help and general advice!! I have suffered with KC for about 9 years and have managed with contacts. I had quite a few probs when I first had them (Like everyone!!) and it took about a year to get some fitted. I then had a pretty good run of about 4 years with only a few probs which I coped with. Over the last two years things have got worse and It's getting me down. If I had to take a lens out i could cope with wearing one but now my eye sight is that bad i struggle to see with one in. I am a health visitor and driving is an important part of my job last week I had to take both out in the middle of driving and my husband had to come and fetch me home which really upset me and I worry this will happen again while Im a work. I have to go without lenses at least twice a week which means I cant do much else. Now at the time of writing Im down to one!! Sorry to moan on but I have never meet any fellow KC suffers and im really interested to know a few things

Im not actually under a consultant as such he discharged me when he passsed me to the contact lens specialist and therefore see no one else. He is very set in his ways and isnt very forth-coming with and other possible treaments he doesnt seem to hear me when I say im not doing very well and didnt even want to know when I asked about piggy backing. Has any one else had problems like this??

I have had to do a lot of my own research of late which lead me here!!! and found out about the Intacs and that are avaible at the Eye centre at city road hospital in birmingham and have gone back to my GP and been referred to Professor Sunil Shar. Does any one have experince of Intacs or see Professor Shar?

Finally!!!

It was a long shot but I went for an eye test to see if glasses made a differnce so that when my lenses hurt I can at least have a bit of sight around the house and they seemed to help a little. so noe debating whether to go ahead. Does any one else find releif from glasses?

Sorry to go on but its so good to know that other people understand
Thanks for listening!
Laura

[JMRmail]

Sorry to hear of your problems, it is very difficult, isn't it?

I live in the States, so I can't recommend what you can do where you live, but I do have some general advice on coping.

I can tolerate one lens 16 hours a day, in my "good" eye. In my bad eye, I can wear a lens about 8 hours a day. Some days, I cannot tolerate a lens. I have had Intacs and C3-R, and I am probably the most progressed case ever successfully treated without a graft or transplant.

I can be spectacle corrected in my good eye (thank goodness for Intacs), but going from contacts to glasses requires about an hour of adjusting and then I still can't really read with them on, because I need reading glasses. So I've given up on that route as it seemed to be a really sub-par answer.

One of the best things I did was to really increase the amount of water I was drinking daily. You might also look into whether you need additional Iodine in your diet.

I work from my home and own my own business because I could not possibly deal with the daily rigors of employment. There are times I need to lay down with an ice pack, or simply take a nap. There are days that I do not want to drive or even venture outside.

It has been very difficult to admit that I need help, but I have been more open about asking for it. Perhaps it is time to really consider your situation and what is prudent, what is reality, as ugly and unwanted as it might be.

For several years before my surgery, I stopped driving at night because my vision was so poor. With all those lights and the halos and comet tails, I knew it was not a good idea. I simply informed everyone around me that I no longer felt safe and that I wouldn't be driving after dark. That was the reality of the situation and no matter how much I felt it was unfair, my safety and the safety of other drivers had to take precedence. And, not having that stress of driving made coping during the day much easier. And I'm here to tell you, things do change and I did return to driving at night.

I think it's important to have a list of what you absolutely, positively need to be able to see. Mine was my computer for work. I could get someone else to drive or run errands, I didn't need to read a book or watch television, but no one else could really do my work. And, maybe it is time to lighten up your daily load. I stopped doing housework, I stopped doing yard work. I hired help. What time I did have good vision was not going to be wasted on mopping floors.

I have found that certain eye drops have been tremendously helpful. I use Patanol for allergies and I used Acular for inflammation. The Acular stings like the dickens, but it makes lens wear much more tolerable. It really works wonders. Have you asked your fitter for a sample? It is quite pricey here, like $45 US for a bottle that last me about one month.

You might consider moving to a Scleral lens, it is a much larger lens that rides on the whites of your eyes and has a reservoir for saline or wetting solution that bathes your eye all day in moisture. The upside is that they don't slip, fall out, or get dust under them. The downside is they are a pain to insert and remove. You have to use a plunger to get it out of your eye (although I have a trick for removing them without one). I did have two different lenses for my bad eye for awhile and I found alternating them helped for awhile.

Just some general thoughts about philosophy. . . .

It is really difficult to find a fitter that truly cares. It's not his or her eyes that hurt, or can't see, so there isn't a whole lot of motivation to suggest new things. I have found that being very proactive and asking about new treatments, or bringing information to my fitter has been a big help. It has also helped his career along and he feels like we're a team now because he knows I care enough to help him and his other patients. So you need to go with information in hand and ask if you can try this or that. Like the drops. Ask to try that to see if it works. Keep trying new lenses, new things.

If my fitter did not know what a piggyback was (tried it and it failed miserably), I would find a new fitter. You'll likely find a scleral lens works much better and is easier to deal with than a piggyback system.

[Andrew MacLean]

JMRmail

Welcome to the forum

In the UK, many of us see optometrists who work in specialist clinics dealing with dozens of people with Keratoconus. This means that they build up an expertise in the lens options as well as the fitting problems that KC patients peresent.

Those who visit high street optometrists can be fortunate, if their eye care professional has some experience of fitting KC eyes, or unfortunate if they have never seen a patient with keratoconus.

Andrew

[JMRmail]

Ahhh, I see, thank you for clearing that up. Health care is so different in various countries. I had to go to Mexico for my Intacs because I could not get C3R done in the US. I was able to shop around for doctors, but I pay all my costs out of pocket, which is several thousand each year. I figure it is well worth it.

[Libby]

Hi Laura,
Sorry to hear of the problems you are encountering at the moment.

I have only ever really worn one contact lens at a time as my left eye does not tolerate a lens well, even with the lens in the sight is not brilliant as I have a scar right in the centre of the cornea. However I think my brain must have adjusted to seeing through one eye as my vision seems very good, even peripherally.

I was told that glasses would be of no use to me and therefore managed with contact lenses alone for more than 15 years. After a difficult period when like yourself I was having problems with my lenses I mentioned I would like to have some spectacles. I realised that the sight would not be sufficient for me to go to work or even to read but any improvement on what was really just a maze of blurred colour (which was the vision I had without lenses) I would see has a benefit. I had spectacles made and they have turned my life around. They are difficult to walk in as they make things look smaller and further away than they are, but I can actually watch the television with them on and at a push read a book, and more importantly see my childrens faces. To me spectacles were worth every penny and although I cannot function as I would with lenses in any improvement is a bonus.

Kind regards
Libby

[Andrew MacLean]

lauradal

I see that I failed to say 'welcome' to you in my first post in this string. Let me put that right now! WELCOME

Are things any better yet?

You have an absolute right to a second ophthalmologicial opinion. If you are no longer seeing your original consultant, ask your GP to refer you to another.

All the best

Andrew

[shamsa]

Hi Laurada

I'm 17 hve recently been diagnosed with KC and have been offered treatement of the famous C3R.
Which i have spoken to DR. Sunil Shah and his team about, and he did mention intacs.
As far as i know at the moment the C3R procedure is only being trialed on 50 patients at the eye hospital.

[JMRmail]

I had C3R done once in my good eye, twice in my bad, with the second time having the epithelium lasered off.

This is just my opinion, but I would not have it done unless I had no other options. I would definitely do the Intacs first as it is relatively reversible (a matter of semantics at this point), it has little side effects. No one knows what the long term effects of C3R, or having UV shot into your eyes and brain.

The only reason I opted for it is because a graft had a high likelihood of failing and I felt like I really had no other options. I would choose C3R over a transplant, however.

Just my opinion. . . .

[sam30]

Welcome!!

I wear scleral lenses which i highly recommend you ask for, Prior to sclerals i had small gas permeable then piggy backs however as my cornea changed I found that these no longer improved my vision. When I first saw the scleral lenses I could have passed out, I didnt relish the idea of having to put them in my eye. Once I had a good fit, the world around me changed dramatically and I realised how bad my vision was getting. Comfort wise after gas premeable they are a dream,( i always felt that I had grit in my eye). With practice the lenses can be put in and out in seconds. I also got a prescription for glasses, Ipaid through the nose for them as I wanted thin lenses, the glasses arrived and I was very disappointed as the lenses were still 8mm thick at the sides and my vision was very poor, If anything for me wearing glasses put so much strain on my eyes that I ended up with intense headaches. The only thing I will say is what works for one doesnt always work for another but you should try anything.

[Asif]

Laura

i can empathise with you sentiments regarding difficulties with contact lenses. i could only tolerate wearing lenses for 6-8 hours in each eye. i needed adequate vision for at least 12 hours so what i used to do was wear an rgp in one eye at a time for 6-8 hours, take it out and then wear the lens for the other eye. that way i was able to see for most of the day but does take a while to get used to monocular vision.

you may want to consider collagen crosslinking treatment (c3r/cxl) and as you say intacs, though the outcome is generally more favourable in keratoconic patients with ealry-moderate stages of the condition. crosslining is able to halt to progression whereas intacs will try to flatten the cornea to give a better lens fitting relationship and as a result better tolerance. however, they are not guaranteed to give successful results. if you want any more information on any of these let me know.

but before trying intacs, which is more invasive than crosslinking, you may want to try a few more of the contact lens types for keratoconus available to you, such as hybrids, piggybacks (you can try different lens combinations with piggybacks), sclerals etc. which ones have you tried so far?