Hi,
I've just recently been diagnosed with KC and I'm extremely worried. I've had a read through this forum and it has been very helpful. I'm a bit overwhelmed with all the information so I was wondering if people could answer some of my questions. I'm very new at this so please bare with me. I acknowledge that some of these questions may have been answered already but I need to calm my nerves. I feel like I may lose my sight.
I visited the hospital recently and spoke to an consultant ophamologist. I have been diagnosed with KC in both eyes. My left eye is very bad (-8) and my right eye is basically compensating for the left. My right eye is fairly good but i feel like its deteriorating. Apparently the 'cone' on my left is not centre and that's why my left eye is bad. The 'cone' on the right eye is in the centre and thus hasn't affected my vision that much.
To be honest the consultant wasn't very helpful. He was very blunt and it felt as though I have been diagnosed with cancer. They offered me the only option which is contact lenses which I've bought from boots already. He mentioned CXL and advised me to do some research on it. He was reluctant to go in more detail as CXL is not on NHS and they cant discuss this treatment. They took a picture of my eye and have arranged another appointment in 12 months.
Im really concerned of the lack of knowledge of KC by ophamologist. I understand its an 'unknown' area but it would be helpful if they could at least point patients in some sort of direction.
Further information is that i suffer from eczema so I have allergies and suffer from hay fever, so have been rubbing my eyes for a long time. I'm 26 years old
My questions are as follows:
1. what is my prognosis? is the condition likely to progress?
2. What sort of treatment would you suggest?
3. If I try CXL should I start with my right eye or left?
4. Do you recommend any eye clinics that offer treatment?
5. Will my right eyesight deteriorate or is it me being paranoid?
6. has anybody tried CXL with an implantable contact lens (ICL)?
7. If there is anyone that has the same diagnosis i.e -8 on left and decent right eye, can you tell me about your experience?
Any help given will be greatly appreciated.
Thanks!
Newly diagnosed KC
Moderators: Anne Klepacz, John Smith, Sweet
-
longhoc
- Moderator
- Posts: 349
- Joined: Sun 26 Dec 2010 11:13 am
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
Re: Newly diagnosed KC
Hi has
And a big welcome to the Forum.
First off, as the Hitchhikers Guide to the Galaxy said "don't panic". Easier said than done, but getting information helps which is what you're asking for and is exactly the right thing to do, well done. Lots of info to give so here goes !
1. What is my prognosis? is the condition likely to progress?
Yes, but it's not certain. Your Keratoconus may well progress. But the rate of progression varies hugely from person to person. Some people progress quite quickly but others hardly at all. Now that you've got your diagnosis, you can be monitored so you'll know exactly what's happening in terms of the rates of progressions.
2. What sort of treatment would you suggest?
Ah... that's a complicated question ! There's lots of opinions on this one. Many people have the rigid lens types prescribed (RGPs as they're known) and are happy with those. But others find them completely unsuitable. There's all sorts of other lens types, from soft lenses specially designed for Keratoconus through to larger diameter RGPs and hybrids which are soft and hard lenses together. Then you've also got "piggybacks" which is a hard lens on top of a soft lens. The only way to find out what might work for you is to try them. But typically, the starting point is an RGP. How do you get on with what you're using at the moment ? Is it good, bad or indifferent ?
3. If I try CXL should I start with my right eye or left?
CXL should only be used where there is clear evidence of progression. If this hasn't been determined yet, best to wait for the next set of measurements and decide then. Are you okay to wait for a year to get your next set of tests done ? I'll confess, I don't know what is the best time interval when you're newly diagnosed but if you're wondering if it is worth being checked in, say, 6 months, then we do have professionals who look at this Forum so you can ask that one. Could be though that there's nothing to be gained by having tests sooner than that.
4. Do you recommend any eye clinics that offer treatment?
We've all got our own experiences of clinics but it's not really appropriate for us to make recommendations (or un-recommendations !) here on the Forum. Would you like people who have had a good experience to send you details in a private message ? Would be helpful to give a general indication of your geographical location (e.g. "London" or "Scotland").
5. Will my right eyesight deteriorate or is it me being paranoid?
No, you're not paranoid. In fact, checking your vision and reporting anything amiss to a professional is the best thing you can do (but be sensible, don't get obsessive about it). I think someone gave a good bit of advice on this Forum a while back which was to use a car number plate of a vehicle that is parked in the same sort of place every day and do a quick self-test. Obviously you'll get minor variations day-to-day, but anything drastic you can then think about getting an appointment and having it checked out.
6. has anybody tried CXL with an implantable contact lens (ICL)?
Not me, but I know several people here have. I'm sure they'll tell you what they found these to be like !
7. If there is anyone that has the same diagnosis i.e -8 on left and decent right eye, can you tell me about your experience?
Again, not me, but I'm sure there's someone who has... I've got one "not so bad" eye and one "rubbish" eye, and such "bilateral" ("both sides") Keratoconus is common, but it is very rare for where you have Keratoconus affecting both eyes for both eyes to be equally affected.
Please do let us know if there's anything else you're concerned about. My "answers" typically lead to more questions so do shout up if I've caused more confusion than help !
You also mentioned allergies. Allergies and eczema are both associated with Keratoconus and there seems to be a genetic link between all three conditions. The allergies cause eye rubbing and eye rubbing is strongly implicated in the progression of Keratoconus. So do try to wean yourself off the eye rubbing if at all possible. Managing allergies to break the cycle of eye rubbing may be of benefit so it's definitely a good idea to treat your ailments "holistically" in my opinion -- let us know if you're not sure where to start on that one.
Best wishes
Chris
PS Please let us know if you'd like any of our most excellent literature...
And a big welcome to the Forum.
First off, as the Hitchhikers Guide to the Galaxy said "don't panic". Easier said than done, but getting information helps which is what you're asking for and is exactly the right thing to do, well done. Lots of info to give so here goes !
1. What is my prognosis? is the condition likely to progress?
Yes, but it's not certain. Your Keratoconus may well progress. But the rate of progression varies hugely from person to person. Some people progress quite quickly but others hardly at all. Now that you've got your diagnosis, you can be monitored so you'll know exactly what's happening in terms of the rates of progressions.
2. What sort of treatment would you suggest?
Ah... that's a complicated question ! There's lots of opinions on this one. Many people have the rigid lens types prescribed (RGPs as they're known) and are happy with those. But others find them completely unsuitable. There's all sorts of other lens types, from soft lenses specially designed for Keratoconus through to larger diameter RGPs and hybrids which are soft and hard lenses together. Then you've also got "piggybacks" which is a hard lens on top of a soft lens. The only way to find out what might work for you is to try them. But typically, the starting point is an RGP. How do you get on with what you're using at the moment ? Is it good, bad or indifferent ?
3. If I try CXL should I start with my right eye or left?
CXL should only be used where there is clear evidence of progression. If this hasn't been determined yet, best to wait for the next set of measurements and decide then. Are you okay to wait for a year to get your next set of tests done ? I'll confess, I don't know what is the best time interval when you're newly diagnosed but if you're wondering if it is worth being checked in, say, 6 months, then we do have professionals who look at this Forum so you can ask that one. Could be though that there's nothing to be gained by having tests sooner than that.
4. Do you recommend any eye clinics that offer treatment?
We've all got our own experiences of clinics but it's not really appropriate for us to make recommendations (or un-recommendations !) here on the Forum. Would you like people who have had a good experience to send you details in a private message ? Would be helpful to give a general indication of your geographical location (e.g. "London" or "Scotland").
5. Will my right eyesight deteriorate or is it me being paranoid?
No, you're not paranoid. In fact, checking your vision and reporting anything amiss to a professional is the best thing you can do (but be sensible, don't get obsessive about it). I think someone gave a good bit of advice on this Forum a while back which was to use a car number plate of a vehicle that is parked in the same sort of place every day and do a quick self-test. Obviously you'll get minor variations day-to-day, but anything drastic you can then think about getting an appointment and having it checked out.
6. has anybody tried CXL with an implantable contact lens (ICL)?
Not me, but I know several people here have. I'm sure they'll tell you what they found these to be like !
7. If there is anyone that has the same diagnosis i.e -8 on left and decent right eye, can you tell me about your experience?
Again, not me, but I'm sure there's someone who has... I've got one "not so bad" eye and one "rubbish" eye, and such "bilateral" ("both sides") Keratoconus is common, but it is very rare for where you have Keratoconus affecting both eyes for both eyes to be equally affected.
Please do let us know if there's anything else you're concerned about. My "answers" typically lead to more questions so do shout up if I've caused more confusion than help !
You also mentioned allergies. Allergies and eczema are both associated with Keratoconus and there seems to be a genetic link between all three conditions. The allergies cause eye rubbing and eye rubbing is strongly implicated in the progression of Keratoconus. So do try to wean yourself off the eye rubbing if at all possible. Managing allergies to break the cycle of eye rubbing may be of benefit so it's definitely a good idea to treat your ailments "holistically" in my opinion -- let us know if you're not sure where to start on that one.
Best wishes
Chris
PS Please let us know if you'd like any of our most excellent literature...
-
harker
- Regular contributor
- Posts: 51
- Joined: Sun 12 Dec 2010 11:52 am
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
Re: Newly diagnosed KC
1. what is my prognosis? is the condition likely to progress?
It'll probably progress, before levelling out as you approach your forties. The rate of progression and the eventual severity vary quite a lot from person to person. Some people never even progress to the point of needing contact lens, others go from 20/20 to needing grafts surprisingly quickly (a year or two). It's unpredictable.
2. What sort of treatment would you suggest?
Start with rigid contact lens, then try other types if they don't work. You should also consider CXL, I think, but understand it's not a magic bullet or a guaranteed outcome. And it only stops progression, in the vast majority of cases.
3. If I try CXL should I start with my right eye or left?
Your choice, doctors will offer differing opinions. It's basically a choice between stopping your bad eye getting worse and keeping your good eye strong, though if you have both procedures done relatively close together it might not really matter.
4. Do you recommend any eye clinics that offer treatment?
Depends where you are!
5. Will my right eyesight deteriorate or is it me being paranoid?
Your uncorrected vision will probably deteriorate, but that might not matter if you're using contacts anyway.
6. has anybody tried CXL with an implantable contact lens (ICL)?
Not me. Others have, though.
7. If there is anyone that has the same diagnosis i.e -8 on left and decent right eye, can you tell me about your experience?
If you're trying to find someone who has one eye worse than the other, that's fairly common. If you're hoping for someone with the exact same diagnosis, I wouldn't bother. There's so many variables - cone position, corneal thickness, topography and prescription - that every case is essentially unique.
It'll probably progress, before levelling out as you approach your forties. The rate of progression and the eventual severity vary quite a lot from person to person. Some people never even progress to the point of needing contact lens, others go from 20/20 to needing grafts surprisingly quickly (a year or two). It's unpredictable.
2. What sort of treatment would you suggest?
Start with rigid contact lens, then try other types if they don't work. You should also consider CXL, I think, but understand it's not a magic bullet or a guaranteed outcome. And it only stops progression, in the vast majority of cases.
3. If I try CXL should I start with my right eye or left?
Your choice, doctors will offer differing opinions. It's basically a choice between stopping your bad eye getting worse and keeping your good eye strong, though if you have both procedures done relatively close together it might not really matter.
4. Do you recommend any eye clinics that offer treatment?
Depends where you are!
5. Will my right eyesight deteriorate or is it me being paranoid?
Your uncorrected vision will probably deteriorate, but that might not matter if you're using contacts anyway.
6. has anybody tried CXL with an implantable contact lens (ICL)?
Not me. Others have, though.
7. If there is anyone that has the same diagnosis i.e -8 on left and decent right eye, can you tell me about your experience?
If you're trying to find someone who has one eye worse than the other, that's fairly common. If you're hoping for someone with the exact same diagnosis, I wouldn't bother. There's so many variables - cone position, corneal thickness, topography and prescription - that every case is essentially unique.
-
Anne Klepacz
- Committee
- Posts: 2293
- Joined: Sat 20 Mar 2004 5:46 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
Re: Newly diagnosed KC
Just to add to what Chris has already said - I'm the one to contact if you'd like our information booklet on KC. Just e-mail your postal address to anne@keratoconus-group.org.uk I'll also send you the DVD of our 2009 conference which covered all the options in more detail, including crosslinking.
What sort of contact lenses did Boots prescribe for you? Did the contact lens practitioner you saw there know a lot about KC? I ask because although there are some very good optometrists in High Street opticians, some only see people with KC very rarely so don't build up much knowledge about fitting KC eyes (which can be a challenge to fit!) Which is why most of us get our contact lenses from hospital contact lens departments where the specialist optometrists are. So if the hospital you went to has its own contact lens department, you could get lenses there (and pay NHS rates for them which at around £54 per lens is a bit cheaper than the High Street). Hospitals without a CL dept usually have a contract with a specialist optom in the community who knows about KC and fits KC eyes in the area.
Anne
What sort of contact lenses did Boots prescribe for you? Did the contact lens practitioner you saw there know a lot about KC? I ask because although there are some very good optometrists in High Street opticians, some only see people with KC very rarely so don't build up much knowledge about fitting KC eyes (which can be a challenge to fit!) Which is why most of us get our contact lenses from hospital contact lens departments where the specialist optometrists are. So if the hospital you went to has its own contact lens department, you could get lenses there (and pay NHS rates for them which at around £54 per lens is a bit cheaper than the High Street). Hospitals without a CL dept usually have a contract with a specialist optom in the community who knows about KC and fits KC eyes in the area.
Anne
Re: Newly diagnosed KC
Thank you all for your responses! you have been very helpful!
I live in Wales so Ive decided to make a private appointment in Bridgend Hospital. Apparently they will do a more thorough examination than in an nhs hospital. Im going there on Tuesday so I will keep everyone updated. They chances are that they will suggest that I do CXL. Im very nervous but I suppose I just should bite the bullet.
Has anyone had CXL and there vision has improved? Would you recommend epithelial off?
Thanks
I live in Wales so Ive decided to make a private appointment in Bridgend Hospital. Apparently they will do a more thorough examination than in an nhs hospital. Im going there on Tuesday so I will keep everyone updated. They chances are that they will suggest that I do CXL. Im very nervous but I suppose I just should bite the bullet.
Has anyone had CXL and there vision has improved? Would you recommend epithelial off?
Thanks
-
Jonathan
- Newbie
- Posts: 3
- Joined: Mon 25 Jun 2012 8:01 pm
- Keratoconus: Yes, I have KC
- Vision: Spectacles
Re: Newly diagnosed KC
Hi guys,
All these stories sound really familiar, although i was only diagnosed last week when going for a laser eye surgery consultation (which i was sure i could have) i have been through all the emotions and Internet searches. I have though been referred to Moorfields Eye Hospital in London which is apparetly a world renowned hospital. They have a private centre at the hospital too but even a consultation costs £250-£300!
I have the same questions... will I be almost blind a year, 5 years, 10 years? Will my eyes stay the same? is my life over? etc etc......But all i can come up with is to go on with my life like it's 2 weeks ago and i didn't know anything about this. Although i will progress with my hospital appointments. I believe that at least one of the treatments will suit me.
Take care
Jon
All these stories sound really familiar, although i was only diagnosed last week when going for a laser eye surgery consultation (which i was sure i could have) i have been through all the emotions and Internet searches. I have though been referred to Moorfields Eye Hospital in London which is apparetly a world renowned hospital. They have a private centre at the hospital too but even a consultation costs £250-£300!
I have the same questions... will I be almost blind a year, 5 years, 10 years? Will my eyes stay the same? is my life over? etc etc......But all i can come up with is to go on with my life like it's 2 weeks ago and i didn't know anything about this. Although i will progress with my hospital appointments. I believe that at least one of the treatments will suit me.
Take care
Jon
-
Andrew MacLean
- Moderator
- Posts: 7703
- Joined: Thu 15 Jan 2004 8:01 pm
- Keratoconus: Yes, I have KC
- Vision: Other
- Location: Scotland
Re: Newly diagnosed KC
Jonathan wrote:All these stories sound really familiar, although i was only diagnosed last week when going for a laser eye surgery consultation (which i was sure i could have) i have been through all the emotions and Internet searches. I have though been referred to Moorfields Eye Hospital in London which is apparetly a world renowned hospital. They have a private centre at the hospital too but even a consultation costs £250-£300!
I have the same questions... will I be almost blind a year, 5 years, 10 years? Will my eyes stay the same? is my life over? etc etc......But all i can come up with is to go on with my life like it's 2 weeks ago and i didn't know anything about this. Although i will progress with my hospital appointments. I believe that at least one of the treatments will suit me.
Take care
Jon
Jon
Good questions! I am afraid that they are hard to answer.
As to progression of the condition the general rule of thumb is that the older we get the more slowly KC progresses. the overwhelming majority of people with KC never lose their sight and never get close to being 'legally blind'.
Keratoconus does stabilise. For many people there will be progression that will then be arrested and their condition can be comfortably managed by wearing contact lenses. You may hear about cross linking and the aim of this therapy is to induce the stabilisation of the cornea.
You can have confidence in the team at Moorfields.
Every good wish.
Andrew
Andrew MacLean
-
longhoc
- Moderator
- Posts: 349
- Joined: Sun 26 Dec 2010 11:13 am
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
Re: Newly diagnosed KC
Hi there Jon
Yes, you're spot on when you go into this with the approach "I believe that at least one of the treatments will suit me." My Keratoconus has been a bit of a wild ride and I've certainly been through good times and not-so good times with it. But if I think back, the bad times were more about where I was around the condition rather than the disease per se.
That being said, I certainly don't believe in faking a smile and pretending to be okay when you're not really. At those times, you might just have to feel the feelings and follow wherever they take you. One thing that never fails to help is to talk to someone -- preferably someone who really understands what is going on for you. I have been known to post in Let of Steam at such times and I always end up better for it. I think the last time was during a truly miserable day at a certain large hospital in the south of England where I had to endure an Orwellian trip (although to be more accurate, it was like that film "Brazil") through "the system" -- one queue for the optometrist, one queue for the pentacam, one queue for a refraction, one queue for a "contact lens specialist" then finally an ophthalmologist who I was eternally grateful for when they shared with me that they too thought it was not exactly the best experience for patients. People here understood and just hearing (or reading anyway) them made me feel a whole lot better.
And then I was able to have a proper, objective, think about what I wanted and what I could do about things. I decided that next time, I'd pay to see a specialist optometrist who really understood Keratoconus. Paid I did too, through the nose, but it was my choice and I was in and out in around an hour end-to-end including the contact lens fitting. I was seen in comfortable, pleasant surroundings in a nice part of town by people who had plenty of time to go through things with me. The downside was that my "new carpet fund" was sadly depleted but I could look at a manky carpet for a few months longer, it was worth it.
I'm still looking at that manky carpet so next time I might brave the hospital again... but at least I've got some choices and I get the clear head I need to make them because I'm not weighted down by thoughts I can't express. So if you're stuck, please do let us know.
Cheers
Chris
PS -- @has, hope you got on okay today.
Yes, you're spot on when you go into this with the approach "I believe that at least one of the treatments will suit me." My Keratoconus has been a bit of a wild ride and I've certainly been through good times and not-so good times with it. But if I think back, the bad times were more about where I was around the condition rather than the disease per se.
That being said, I certainly don't believe in faking a smile and pretending to be okay when you're not really. At those times, you might just have to feel the feelings and follow wherever they take you. One thing that never fails to help is to talk to someone -- preferably someone who really understands what is going on for you. I have been known to post in Let of Steam at such times and I always end up better for it. I think the last time was during a truly miserable day at a certain large hospital in the south of England where I had to endure an Orwellian trip (although to be more accurate, it was like that film "Brazil") through "the system" -- one queue for the optometrist, one queue for the pentacam, one queue for a refraction, one queue for a "contact lens specialist" then finally an ophthalmologist who I was eternally grateful for when they shared with me that they too thought it was not exactly the best experience for patients. People here understood and just hearing (or reading anyway) them made me feel a whole lot better.
And then I was able to have a proper, objective, think about what I wanted and what I could do about things. I decided that next time, I'd pay to see a specialist optometrist who really understood Keratoconus. Paid I did too, through the nose, but it was my choice and I was in and out in around an hour end-to-end including the contact lens fitting. I was seen in comfortable, pleasant surroundings in a nice part of town by people who had plenty of time to go through things with me. The downside was that my "new carpet fund" was sadly depleted but I could look at a manky carpet for a few months longer, it was worth it.
I'm still looking at that manky carpet so next time I might brave the hospital again... but at least I've got some choices and I get the clear head I need to make them because I'm not weighted down by thoughts I can't express. So if you're stuck, please do let us know.
Cheers
Chris
PS -- @has, hope you got on okay today.
Re: Newly diagnosed KC
Hi Everyone,
I've decided Im not going to wait any longer and be pro active rather than reactive. Ive had 2 consults now and have decided to contact David O.brart. Apparently he's very good. Any thoughts?
Ive also been told and I dont know if any one is aware of this (if you know anything please get in touch!) but apparently Moorfields do offer CXL on NHS? My ophamologist told me this and he said "dont mention my name"??
I've decided Im not going to wait any longer and be pro active rather than reactive. Ive had 2 consults now and have decided to contact David O.brart. Apparently he's very good. Any thoughts?
Ive also been told and I dont know if any one is aware of this (if you know anything please get in touch!) but apparently Moorfields do offer CXL on NHS? My ophamologist told me this and he said "dont mention my name"??
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