HELLO PEOPLE
I AM 23 AND LIVE IN HEATHROW,I HAVE KERATOCONUS IN MY LEFT EYE,
I HAVE HAD THIS PROBLEM FOR MANY YEARS AND IT SEEMS TO BE GETTING WORSE.
I AM ATTENDING MOORFIELDS EYE HOSPITAL,HOWEVER I REALLY FEEL ALONE AND UPSET WITH THIS PROBLEM AS IT REALLY IS AFFECTING MY LIFE.
IT HAS GONE SO BAD THAT I CAN FEEL THE BUMP SHAPE OF MY EYE UNDER MY EYE LID AND ALSO MY VISION HAS GOT MUCH WORSE OVER THE YEARS,I CAN NOT NOT EVEN DRIVE AT NIGHT NOW.
I HAVE NEVER MET PEOPLE WITH THIS PROBLEM AND PEOPLE FIND IT WEIRD,I FEEL REALLY SCARED AND SOMTIMES WISH OTHERS COULD SEE HOW I SEE EVEN FOR AN HOUR.
I AM SO GLAD I HAVE FOUND A PLACE WHERE I CAN SPEAK TO OTHERS ABOUT IT.
I DO NOT KNOW MUCH ABOUT THIS PROBLEM AND THE HOSPITAL HAS NOT REALLY HELPED.
I AM AT THIS MOMENT TRYING A BIG lens BUT IT MAKES MY VISION FUNNY,I CAN SEE BETTER,BUT IT FEELS LIKE I HAVE GONE CROSS EYED...
WHY DOES THIS HAPPEN?
THE HOSPITAL SAID ITS CALLED CONFUSED VISION AND THEY WANT TO GIVE ME SOME SORT OF BOTOX INJECTION TO CORRECT THE VISION...WHAT IS THAT?
I REALLY HOPE SOMEONE CAN HELP?
WILL I HAVE ANY CHANCE OF GETTING MY VISION BACK?
ALSO WILL IT HAPPEN TO MY OTHER EYE?
AND WILL I CAN BLIND IN DUE TIME?
PLEASE PLEASE HELP ME.
THANK YOU IN ADVANCE.
HELP PLEASE,I AM SCARED,AND I AM NEW,I NEED FRIENDS
Moderators: Anne Klepacz, John Smith, Sweet
-
Susan Mason
- Forum Stalwart
- Posts: 414
- Joined: Sat 24 Jan 2004 11:27 pm
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
- Location: Bolton Lancashire
Hello
Sorry to hear you are having such a rough time at the present.
A lot of what you say I think lots of us have felt at some time or another.
You mention you are 23 and that you have had KC for a while, so how have you managed so far, or has it only just been diagnosed as KC and previously you just had a problem.
Moorfiels eye hospital seems to get a lot of very positive feedback however, I have no personal experience of it. What I do find is that the appointments at any hospital or GP's for that matter are quite time restricted at times and also tend to be a situation where I personally suddenly forget everything, including which is right and left.
Luckily my optom thinks it is amusing and works well at putting me at my ease.
Recently when I was having quite a few problems my consultant also was very kind and suggested that if necessary a double appointment could be arranged for me to enable all points to be covered (I had a lot os questions that I desperately needed answers to).
My husband tells me if he looks into my eyes, no passion involved here I am afraid he can see that both are now a very funny shape, and side on, with or without my scleral lenses in I look quite freaky. I find this quite amusing and if I see others looking I just give a hard stare back.
As for driving I too currently have given up. It was getting to fraught for me and I felt that as I had spent so long with variable vision due to different lenses I had lost a lot of confidence.
As for wishing other could see how I do well I think we should start a club, again I think this is a very common feeling. At times others including family and close friends can be very insensitive.
As for the hospital helping you well I would say you need to ask questions. I have found in the past they do not volunteer the information possibly because if they told us everything straight away we would all go out and be very upset indeed.
If you can take someone with you I would suggest you do and also have a list of questions that you want answers to with you. I leave my list with my husband and he is in charge of making sure he has the answers to everything on it. This is because in the past I have had lenses in, out and shaken all about and then coloured dye and drops by which time I can't see the list anyway.
I have also written questions down and left them with the optom who has rung me back with information where possible.
Cross eyed vision, well no experience here sorry. I would expect that it could be due to you having been used to managing with one eye for some time. The brain tends to adjust to this quite well and I would hope that it will adjust back once it is used to seeing through two eyes again and the lens that has been fitted is confirmed as correct.
No idea what the injection is ... make sure you ask. Get them to go over the problem again until you understand.
For me yes I got some vision back however it is not what you would call perfect. My husband and little boy can both see much better however we are all different vision wise and not many people see perfectly.
I am thankful that with my scleral lenses in I can watch TV and do most other things quite easily alothough my vision time is limited it is not currently every waking moment. You do however find ways of coping with this such as wearing one lens at a time and thus doubling seeing time.
Your other eye? I don't know ask the hospital they may be able to tell or at least keep you updated as to how it looks. I am sure I have read that people can have KC in just one eye. I have it in both, however one is more severe although both need lenses to let me see.
Going blind well I have been told no it won't happen however, I would say who knows, try not to worry too much about what you cannot control, you have enough to think about at present.
I would expect others on the site will also be able to opffer their support.
I have in the past also spoken to counsellors and the GP has helped.
Just remember you are not alone.
best wishes
Susan
Sorry to hear you are having such a rough time at the present.
A lot of what you say I think lots of us have felt at some time or another.
You mention you are 23 and that you have had KC for a while, so how have you managed so far, or has it only just been diagnosed as KC and previously you just had a problem.
Moorfiels eye hospital seems to get a lot of very positive feedback however, I have no personal experience of it. What I do find is that the appointments at any hospital or GP's for that matter are quite time restricted at times and also tend to be a situation where I personally suddenly forget everything, including which is right and left.
Luckily my optom thinks it is amusing and works well at putting me at my ease.
Recently when I was having quite a few problems my consultant also was very kind and suggested that if necessary a double appointment could be arranged for me to enable all points to be covered (I had a lot os questions that I desperately needed answers to).
My husband tells me if he looks into my eyes, no passion involved here I am afraid he can see that both are now a very funny shape, and side on, with or without my scleral lenses in I look quite freaky. I find this quite amusing and if I see others looking I just give a hard stare back.
As for driving I too currently have given up. It was getting to fraught for me and I felt that as I had spent so long with variable vision due to different lenses I had lost a lot of confidence.
As for wishing other could see how I do well I think we should start a club, again I think this is a very common feeling. At times others including family and close friends can be very insensitive.
As for the hospital helping you well I would say you need to ask questions. I have found in the past they do not volunteer the information possibly because if they told us everything straight away we would all go out and be very upset indeed.
If you can take someone with you I would suggest you do and also have a list of questions that you want answers to with you. I leave my list with my husband and he is in charge of making sure he has the answers to everything on it. This is because in the past I have had lenses in, out and shaken all about and then coloured dye and drops by which time I can't see the list anyway.
I have also written questions down and left them with the optom who has rung me back with information where possible.
Cross eyed vision, well no experience here sorry. I would expect that it could be due to you having been used to managing with one eye for some time. The brain tends to adjust to this quite well and I would hope that it will adjust back once it is used to seeing through two eyes again and the lens that has been fitted is confirmed as correct.
No idea what the injection is ... make sure you ask. Get them to go over the problem again until you understand.
For me yes I got some vision back however it is not what you would call perfect. My husband and little boy can both see much better however we are all different vision wise and not many people see perfectly.
I am thankful that with my scleral lenses in I can watch TV and do most other things quite easily alothough my vision time is limited it is not currently every waking moment. You do however find ways of coping with this such as wearing one lens at a time and thus doubling seeing time.
Your other eye? I don't know ask the hospital they may be able to tell or at least keep you updated as to how it looks. I am sure I have read that people can have KC in just one eye. I have it in both, however one is more severe although both need lenses to let me see.
Going blind well I have been told no it won't happen however, I would say who knows, try not to worry too much about what you cannot control, you have enough to think about at present.
I would expect others on the site will also be able to opffer their support.
I have in the past also spoken to counsellors and the GP has helped.
Just remember you are not alone.
best wishes
Susan
-
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
Unfortunatly due to time constarints on the NHS information is not often volunteerd, but as Susan says, if you can take someone in armed with a list of question I think they are actually obliged to answer them.
The brain does get confused if you have relied on one eye for a long time. However given time it will re-educate itself. As KC patients we unfiortunatly have develop the patients of saints.
Due to the nature of KC, it can be difficult to get the lens prescription right first time as the optom has to try and compensate too for they eye not being relaxed as it would normally be considering something has been put in it.
As for feeling the bump on your eye under the eyelid, I have this and that prompted me to see the optom.
KC can go through phases of getting worse and seeming impossible to manage and then it can settle for long periods too.
When you are next in the hospital waiting room, do not be afraid to ask if anyone else has KC. I did it on my last visit and had a good chat with them in the waiting room sharing experiences. Even with corrected sight you can not tell someone with KC which akes it difficult for people to understand.
Hang in there and do not leave until your questions are answerd.
Good luck.
Gareth
The brain does get confused if you have relied on one eye for a long time. However given time it will re-educate itself. As KC patients we unfiortunatly have develop the patients of saints.
Due to the nature of KC, it can be difficult to get the lens prescription right first time as the optom has to try and compensate too for they eye not being relaxed as it would normally be considering something has been put in it.
As for feeling the bump on your eye under the eyelid, I have this and that prompted me to see the optom.
KC can go through phases of getting worse and seeming impossible to manage and then it can settle for long periods too.
When you are next in the hospital waiting room, do not be afraid to ask if anyone else has KC. I did it on my last visit and had a good chat with them in the waiting room sharing experiences. Even with corrected sight you can not tell someone with KC which akes it difficult for people to understand.
Hang in there and do not leave until your questions are answerd.
Good luck.
Gareth
Hi there,
welcome to the forum. In terms of giving you advice.. i am quite a newbie (6 months) for having been diagnosed KC.. as i spent more and more time here.... i found it all the more comforting and answered all the questions i had!
i does help.. and what your feeling mentally, i went through it when i first heard of it..!
and i'm sure it;s the same for all the other people who come here!
Do stick at it.. and make sure you keep coming back here... if we won;t listen to fellow KC'ers moan who will?!?! so please feel free as i do!
Laters
welcome to the forum. In terms of giving you advice.. i am quite a newbie (6 months) for having been diagnosed KC.. as i spent more and more time here.... i found it all the more comforting and answered all the questions i had!
i does help.. and what your feeling mentally, i went through it when i first heard of it..!
and i'm sure it;s the same for all the other people who come here!
Do stick at it.. and make sure you keep coming back here... if we won;t listen to fellow KC'ers moan who will?!?! so please feel free as i do!
Laters
"Snowflakes are one of Nature's most fragile things, but just look at what they can do when they stick together!"
"Tell me and i'll forget, show me, and i may not remember, involve me, and i'll understand!"
"Tell me and i'll forget, show me, and i may not remember, involve me, and i'll understand!"
-
Knight
- Chatterbox
- Posts: 188
- Joined: Thu 12 May 2005 1:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: classified
People really do manage KC in many different ways and I've learned some tricks over the 10+ yrs that I had it.
Like you it started off in my left eye first and it is weird feeling the bump thru the eyelid but it has never bothered me. I have yet in my life to meet another person with the same condition, althou I probably have and never knew it at the time bc we dont go around with a sign saying 'KC HERE'.
But I wont repeat what the above replies have already said, as we all pretty much go thru the same thing and in that, it is comforting. Basically, now, I put having KC down to what makes me unique among so many other people in my normal life and its a conversation piece... I got a good excuse to wear sunglasses all the time, I don't look ill yet I have a condition that occassionally makes me feel unsteady due to the weird vision and I suppose I could be alot worse, ie 100% blind so at least I got some vision...
But sometimes I do go thru periods of feeling frustrated bc I can't see and like today, driving my right lens shot up under my eyelid (I'm not wearing my left lens bc it hurts too much and thats the eye I'm getting a graft in soon) and the cop that was going to give me a ticket for parking over a crosswalk let me off ... so fortune favors the unlucky in this case.
My friends call me alien-eyes bc I have the added weird effect under stong sunlight wherebe it reflects a red thing in my eyes without my contacts in... my pupils are larger than normal ...
If you don't know much about the problem, this website is a good start but I would seriously advise, writing questions and concerns down on paper and take it with u as a reminder next time you're at the clinic, and ask away, everyone deserves the right to know about their condition and based on what my consultant said years ago 'Better to ask and have an answer than go home with more questions' ... just dont be afriad to ask the obvious they understand.
The cross eyed feeling will settle down, just give your brain, eye and eye muscles a bit of time to adopt, if you're getting an injection its likely an issue to do with the muscles around the eye needing to relax and that should settle down rather quickly. Also you might want to ask about orthoptic exercises which develop the eye muscles; take a pen, hold it at arm's length, look at the point, then look at a distant object and while looking away bring the pen closer, look back at the pen point, but repeat that until the pen is a few inches away from your nose... like any muscles they all need exercise and I've been doing them for years... apparently I have much better focusing abilities than normal sighted people and with my lenses in I can still focus on objects 1 inch from my face and instantly focus on a distant object with no termors.
Luckily even after such a long time having KC my eyes are still healthy and unscarred, my left vision isn't very good but with both lenses in its still good enough for me to drive, but I do avoid night time driving due to the glare and pain in my eyes, sometimes I drive at night with the left lens out and close that eye, which is good enough for short runs to the store.
As to wishing others to see how I see, I am a graphic designer and I have produced some edited pictures and photographs (before after kinda shots) to give an idea to my family and friends how I see without lenses so if you want I can make those available.
Going blind from KC alone wont happen, ever, unless you got another condition or decease so I have never worried about that. I don't know how much what I've said has helpped or is relevant but if you have any other question or need me to clarify something pls feel free and I'd be happy to pitch in.
Like you it started off in my left eye first and it is weird feeling the bump thru the eyelid but it has never bothered me. I have yet in my life to meet another person with the same condition, althou I probably have and never knew it at the time bc we dont go around with a sign saying 'KC HERE'.
But I wont repeat what the above replies have already said, as we all pretty much go thru the same thing and in that, it is comforting. Basically, now, I put having KC down to what makes me unique among so many other people in my normal life and its a conversation piece... I got a good excuse to wear sunglasses all the time, I don't look ill yet I have a condition that occassionally makes me feel unsteady due to the weird vision and I suppose I could be alot worse, ie 100% blind so at least I got some vision...
But sometimes I do go thru periods of feeling frustrated bc I can't see and like today, driving my right lens shot up under my eyelid (I'm not wearing my left lens bc it hurts too much and thats the eye I'm getting a graft in soon) and the cop that was going to give me a ticket for parking over a crosswalk let me off ... so fortune favors the unlucky in this case.
My friends call me alien-eyes bc I have the added weird effect under stong sunlight wherebe it reflects a red thing in my eyes without my contacts in... my pupils are larger than normal ...
If you don't know much about the problem, this website is a good start but I would seriously advise, writing questions and concerns down on paper and take it with u as a reminder next time you're at the clinic, and ask away, everyone deserves the right to know about their condition and based on what my consultant said years ago 'Better to ask and have an answer than go home with more questions' ... just dont be afriad to ask the obvious they understand.
The cross eyed feeling will settle down, just give your brain, eye and eye muscles a bit of time to adopt, if you're getting an injection its likely an issue to do with the muscles around the eye needing to relax and that should settle down rather quickly. Also you might want to ask about orthoptic exercises which develop the eye muscles; take a pen, hold it at arm's length, look at the point, then look at a distant object and while looking away bring the pen closer, look back at the pen point, but repeat that until the pen is a few inches away from your nose... like any muscles they all need exercise and I've been doing them for years... apparently I have much better focusing abilities than normal sighted people and with my lenses in I can still focus on objects 1 inch from my face and instantly focus on a distant object with no termors.
Luckily even after such a long time having KC my eyes are still healthy and unscarred, my left vision isn't very good but with both lenses in its still good enough for me to drive, but I do avoid night time driving due to the glare and pain in my eyes, sometimes I drive at night with the left lens out and close that eye, which is good enough for short runs to the store.
As to wishing others to see how I see, I am a graphic designer and I have produced some edited pictures and photographs (before after kinda shots) to give an idea to my family and friends how I see without lenses so if you want I can make those available.
Going blind from KC alone wont happen, ever, unless you got another condition or decease so I have never worried about that. I don't know how much what I've said has helpped or is relevant but if you have any other question or need me to clarify something pls feel free and I'd be happy to pitch in.
HI PEOPLE
THANK YOU VERY VERY MUCH FOR ALL YOUR HELP AND SUPPORT.
YOU HAVE ALL BEEN A GREAT HELP AND I REALLY FEEL I HAVE MADE NEW FRIENDS.
I WILL ASK ALOT MORE QUESTIONS AS I HAVE A CLINIC APP ON THE 25TH OF THIS MONTH.
I KNOW MY VISION IS REALLY BAD IN MY LEFT EYE DUE TO KC,HOWVER MY RIGHT SEEMS OK AT THE MOMENT.
WILL IT HAPPEN IN MY RIGHT EYE?I DO NOT KNOW HOW PEOPLE COPE WITH IT IN BOTH EYES AND I DO TAKE MY HAT OFF TO THOSE WHO DO.
I WILL KEEP YOU ALL UPDATED ABOUT THE INJECTION TO CORRECT THE VISION,BUT I WILL ASK MORE QUESTIONS ABOUT IT WHEN I GO.
THANK YOU AGAIN FRIENDS.
THANK YOU VERY VERY MUCH FOR ALL YOUR HELP AND SUPPORT.
YOU HAVE ALL BEEN A GREAT HELP AND I REALLY FEEL I HAVE MADE NEW FRIENDS.
I WILL ASK ALOT MORE QUESTIONS AS I HAVE A CLINIC APP ON THE 25TH OF THIS MONTH.
I KNOW MY VISION IS REALLY BAD IN MY LEFT EYE DUE TO KC,HOWVER MY RIGHT SEEMS OK AT THE MOMENT.
WILL IT HAPPEN IN MY RIGHT EYE?I DO NOT KNOW HOW PEOPLE COPE WITH IT IN BOTH EYES AND I DO TAKE MY HAT OFF TO THOSE WHO DO.
I WILL KEEP YOU ALL UPDATED ABOUT THE INJECTION TO CORRECT THE VISION,BUT I WILL ASK MORE QUESTIONS ABOUT IT WHEN I GO.
THANK YOU AGAIN FRIENDS.
YOU ARE NEVER ALONE,SO DO NOT SUFFER IN SILENCE.........
-
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
KC is a funny condition, it can stabalise as quick as it starts and remain that way for a long time, mine has been steady for the past 6 months.
Will it occur in the right? Unfortunatly know one can say for definite, but as for coping with KC in both eyes is much the same as having it in one. The only thing I really had to get used to and it did not take long was alternating the sight from one eye to the next if I need to see for more than 8 hours comfotably. However I know many that can comfortably wear lenses for over 12 hours per day.
My suggestion would be concentrate on the KC afefcted eye first.
Gareth
Will it occur in the right? Unfortunatly know one can say for definite, but as for coping with KC in both eyes is much the same as having it in one. The only thing I really had to get used to and it did not take long was alternating the sight from one eye to the next if I need to see for more than 8 hours comfotably. However I know many that can comfortably wear lenses for over 12 hours per day.
My suggestion would be concentrate on the KC afefcted eye first.
Gareth
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