Hi eveyone, i'm a bit scared that i might need surgery in the future, i have KC in both eyes, one worse than the other, and after visiting eye specialists, they have told me to wait for a couple of years before doing anything, im 23, which they say means my eyes are still growing, but my sight just gets annoying, and i'm a musician, so reading music is tough, and i'd love to learn to drive but its holding me back.
Should i get lenses or have an op and get it done and out of the way. I know that sounds like a lazy option but in the career i am doing i wonder would i have the time to mess around with lenses and bottles to clean them etc.
I'd really appreciate any help or opinions
Thanks
Mike
S*** scared that i might need surgery
Moderators: Anne Klepacz, John Smith, Sweet
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jayuk
- Ambassador
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- Location: London / Manchester / Cheshire
Hi
I can understand your concerns; however the "surgery" route is rare; and not all people with KC have to endure it!
From what you have said so far, I would suggest you take the Contact Lens route...and progress from there......
There is no reason why you cannot continue in your chosen profession and enjoy life to the fullest!....And regarding KC getting worse?...Noone can predict how it progresses.....it COULD even just halt and not progress for years, if at all!
There are many treatment/management options for KC now, but I would def recommend you NOT to even think about the Surgery route!..thats a VERY VERY last option and one I hope you never have to have!...
As long as you can get adequate vision from your lenses....than there is no reason to deviate from that path in my opinion
Hope that helps!
I can understand your concerns; however the "surgery" route is rare; and not all people with KC have to endure it!
From what you have said so far, I would suggest you take the Contact Lens route...and progress from there......
There is no reason why you cannot continue in your chosen profession and enjoy life to the fullest!....And regarding KC getting worse?...Noone can predict how it progresses.....it COULD even just halt and not progress for years, if at all!
There are many treatment/management options for KC now, but I would def recommend you NOT to even think about the Surgery route!..thats a VERY VERY last option and one I hope you never have to have!...
As long as you can get adequate vision from your lenses....than there is no reason to deviate from that path in my opinion
Hope that helps!
KC is about facing the challenges it creates rather than accepting the problems it generates -
(C) Copyright 2005 KP
(C) Copyright 2005 KP
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Asif
- Regular contributor
- Posts: 141
- Joined: Wed 01 Sep 2004 5:13 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and spectacles
Following on from what Jay said I would also advise to leave a corneal graft as a last resort. Reason being, as with all surgery, there are risks. As a donor cornea from some one else will be used your body may reject it and infections may occur, leading to possible further surgery. I am not trying to scare you further but you should be aware of all possible outcomes. As with a grafted eye it will not be strong as a normal eye so one serious enough bump to the eye may cause serious damage.
I would definately try contact lenses first. Yes it may be fairly awkward to get used but you will enventually. There are many types of lenses available for keratoconics so if you are finding it difficult coping with one type you can always try another. You will probably first be fitted with rgps, if you find it difficult to tolerate them then some soft lenses available such as kerasoft, if your KC is not too advanced. You will be suprised how much difference a contact lens will make to your vision.
What is your vision like ate the moment? Have you gone past the stage where glasses no longer provide suitable vision?
I would definately try contact lenses first. Yes it may be fairly awkward to get used but you will enventually. There are many types of lenses available for keratoconics so if you are finding it difficult coping with one type you can always try another. You will probably first be fitted with rgps, if you find it difficult to tolerate them then some soft lenses available such as kerasoft, if your KC is not too advanced. You will be suprised how much difference a contact lens will make to your vision.
What is your vision like ate the moment? Have you gone past the stage where glasses no longer provide suitable vision?
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John Smith
- Moderator
- Posts: 1941
- Joined: Thu 08 Jan 2004 12:48 am
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and spectacles
- Location: Sidcup, Kent
Hello Mike,
Don't be concerned about the surgery prospect. As Jayuk said, most of us don't get that far down the KC road.
Also, you must know that surgery is not the be-all and end-all with the graft as it would be for example with an ingrowing toenail.
It is likely that post-surgery you would need to wear contact lenses of one sort or another anyway; so if you think of surgery as the lazy option, you need to think again.
Most of us can certainly make do with wearing RGP or Scleral lenses, and there are various softer lenses out now too. Plus, you can always photo-enlarge your sheet music. And as for driving, I have reasonably poor vision post-graft at the moment, and I recently passed the DVLA sight test! So all is not lost!!
Hang on in there. We just have to be patient, I'm afraid.
Don't be concerned about the surgery prospect. As Jayuk said, most of us don't get that far down the KC road.
Also, you must know that surgery is not the be-all and end-all with the graft as it would be for example with an ingrowing toenail.
It is likely that post-surgery you would need to wear contact lenses of one sort or another anyway; so if you think of surgery as the lazy option, you need to think again.
Most of us can certainly make do with wearing RGP or Scleral lenses, and there are various softer lenses out now too. Plus, you can always photo-enlarge your sheet music. And as for driving, I have reasonably poor vision post-graft at the moment, and I recently passed the DVLA sight test! So all is not lost!!
Hang on in there. We just have to be patient, I'm afraid.
John
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Janet Manning
- Regular contributor
- Posts: 98
- Joined: Thu 25 Mar 2004 9:44 am
- Location: Abingdon,Oxfordshire
I totally agree with Jayuk with regard to surgery. I've had bilateral transplants with no improvement in vision and still have to wear lenses. In fact my unaided vision is now worse, due to severe astigmatism. Some people do get improvement, but outcomes are very variable and cannot be predicted.
I too was told at diagnosis that I would need surgery, but didn't have it for 20 years. Even then I have been told by a different hospital that I could probably have managed without surgery, had I been offered scleral lenses. Once you've had transplants there's no going back and you are effectively sitting on a potential time bomb. Although there are many people with transplants which have survived many years, there is no research beyond 5 years on how long grafts last. Rejection episodes are always a threat. So regard surgery as a last resort, best put off as long as possible.
Contact lenses need not be a problem particularly in the early stages of KC. You will quickly get used to the routine and will almost certainly see better, which gives you the motivation. I wouldn't mind betting you'll have no trouble reading your music with lenses.
Janet
I too was told at diagnosis that I would need surgery, but didn't have it for 20 years. Even then I have been told by a different hospital that I could probably have managed without surgery, had I been offered scleral lenses. Once you've had transplants there's no going back and you are effectively sitting on a potential time bomb. Although there are many people with transplants which have survived many years, there is no research beyond 5 years on how long grafts last. Rejection episodes are always a threat. So regard surgery as a last resort, best put off as long as possible.
Contact lenses need not be a problem particularly in the early stages of KC. You will quickly get used to the routine and will almost certainly see better, which gives you the motivation. I wouldn't mind betting you'll have no trouble reading your music with lenses.
Janet
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GarethB
- Ambassador
- Posts: 4916
- Joined: Sat 21 Aug 2004 3:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
The way technology has moved on, the chances of surgery I feel are reduced every year.
Graft followup past 5 years is getting much larger now, it is the post 10 years that is really vague.
There is no such thing as a KC cure yet, just vareous management strategies.
Mild to moderate cases can be treated with glasses.
More advance cases are managed well contact lenses of which there are a dozen types. I had two grafts as the lens technology was not adavnced enough to manage my KC. Had I developed KC in the past year and it progressed as it did in 1989, I would have coped with lenses for 12 months or more and not three months! My KC was very agressive.
About 10% of people with KC need a graft and about 5% need grafts in each eye. A majority of cases are regarded as succesfull with glasses or contact lenses to improve the vision further. Only a small percentage of those who receive grafts develop rejection issues or problems where lenses are not of much use. Due to the lack of research beyond 10 years I regard grafts as long term management despite mine being succesful 16 years on.
The doctors need to make you aware of the condition and as soon a surgery is mentioned as a possibility, the brain blocks out all that has gone before.
While my sight was managed with lenses before grafts I used to race cars semi-proffesionally. Did a micro biology degree post graft and where I could not do the practical work, I did that later during an industrial placement year. Once the grafts had settled, I went back to racing.
Should you eventually need a graft, the worst eye is done first, so as long as you have good sight in the remaining eye with correction, there is every chance that you can progress the music career and lear to drive too.
Concentrate on the hear and now;
Will contact lenses work? If yes, great, build on what you can do and adapt accordingly. You will be surprised at what can be achieved with a positive outlook.
Through history there have been many examples of blind and deaf musicians having outstanding careers.
Regards
Gareth
Graft followup past 5 years is getting much larger now, it is the post 10 years that is really vague.
There is no such thing as a KC cure yet, just vareous management strategies.
Mild to moderate cases can be treated with glasses.
More advance cases are managed well contact lenses of which there are a dozen types. I had two grafts as the lens technology was not adavnced enough to manage my KC. Had I developed KC in the past year and it progressed as it did in 1989, I would have coped with lenses for 12 months or more and not three months! My KC was very agressive.
About 10% of people with KC need a graft and about 5% need grafts in each eye. A majority of cases are regarded as succesfull with glasses or contact lenses to improve the vision further. Only a small percentage of those who receive grafts develop rejection issues or problems where lenses are not of much use. Due to the lack of research beyond 10 years I regard grafts as long term management despite mine being succesful 16 years on.
The doctors need to make you aware of the condition and as soon a surgery is mentioned as a possibility, the brain blocks out all that has gone before.
While my sight was managed with lenses before grafts I used to race cars semi-proffesionally. Did a micro biology degree post graft and where I could not do the practical work, I did that later during an industrial placement year. Once the grafts had settled, I went back to racing.
Should you eventually need a graft, the worst eye is done first, so as long as you have good sight in the remaining eye with correction, there is every chance that you can progress the music career and lear to drive too.
Concentrate on the hear and now;
Will contact lenses work? If yes, great, build on what you can do and adapt accordingly. You will be surprised at what can be achieved with a positive outlook.
Through history there have been many examples of blind and deaf musicians having outstanding careers.
Regards
Gareth
Gareth
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rosemary johnson
- Champion
- Posts: 1478
- Joined: Tue 19 Oct 2004 8:42 pm
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
- Location: East London, UK
Hi Mike,
One thing to add to the previous advice.
Please don't get hung up too much on all the bottles, cleaning, messing about, etc.
Most of us with KC wear hard contacts. These can be cleaned with Fairy Liquid (or similar) and stored dry, so are much less hassle than the soft ones that need all the secial cleaning regimes.
{Note: your hospital people may not tell you this, for reasons of the modern bureaucracy!) but it can be done.
These days, hard contacts are made of rigid gas permeable (RGP) polymers - this applies to all sizes and shapes (corneal, scleral, mini0scleral, etc etc).
There are some of us who do wear "half-and-half" lenses with hard and soft sections, for which the soft lens cleaning stuff is necessary, unfortunately. DOn't use Fairy Liquid for those!
Rosemary
One thing to add to the previous advice.
Please don't get hung up too much on all the bottles, cleaning, messing about, etc.
Most of us with KC wear hard contacts. These can be cleaned with Fairy Liquid (or similar) and stored dry, so are much less hassle than the soft ones that need all the secial cleaning regimes.
{Note: your hospital people may not tell you this, for reasons of the modern bureaucracy!) but it can be done.
These days, hard contacts are made of rigid gas permeable (RGP) polymers - this applies to all sizes and shapes (corneal, scleral, mini0scleral, etc etc).
There are some of us who do wear "half-and-half" lenses with hard and soft sections, for which the soft lens cleaning stuff is necessary, unfortunately. DOn't use Fairy Liquid for those!
Rosemary
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Sweet
- Committee
- Posts: 2240
- Joined: Sun 10 Apr 2005 11:22 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: London / South Wales
Hey Mike!
Thought i would reply as well! I agree totally with what has already been said about grafts, and think that this is the last option when you have exhausted all others. I used to play a lot of music as well, but sadly had to give up as i couldn't see well enough, and the notes kept jumping lines!! Dam annoying when you are playing a note above or below everyone else!!
If you can see ok to read music with lenses, then i would continue to do so and see how it goes. I used to photocopy the music larger to help me to see it! Most people never need to have a graft, so hopefully that will be the same for you.
As for cleaning, it really isn't that bad! I went to university for three years, spent many drunken nights playing with lenses, and now work twelve hour shifts and don't think twice about taking them out and cleaning them. It becomes second nature, so much that if your eyesight becomes worse you will find that you don't need to be able to see to do it! I hardly need to look now at what i am doing, so stick with it as it will become easier!
Let us know how you get on, and btw what do you play?! LOL, just curious, as i used to play solo cornet
Sweet X x X
Thought i would reply as well! I agree totally with what has already been said about grafts, and think that this is the last option when you have exhausted all others. I used to play a lot of music as well, but sadly had to give up as i couldn't see well enough, and the notes kept jumping lines!! Dam annoying when you are playing a note above or below everyone else!!
If you can see ok to read music with lenses, then i would continue to do so and see how it goes. I used to photocopy the music larger to help me to see it! Most people never need to have a graft, so hopefully that will be the same for you.
As for cleaning, it really isn't that bad! I went to university for three years, spent many drunken nights playing with lenses, and now work twelve hour shifts and don't think twice about taking them out and cleaning them. It becomes second nature, so much that if your eyesight becomes worse you will find that you don't need to be able to see to do it! I hardly need to look now at what i am doing, so stick with it as it will become easier!
Let us know how you get on, and btw what do you play?! LOL, just curious, as i used to play solo cornet
Sweet X x X
Sweet X x X
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