New member, my KC story so far..
Moderators: Anne Klepacz, John Smith, Sweet
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Lynn White
- Optometrist
- Posts: 1398
- Joined: Sat 12 Mar 2005 8:00 pm
- Location: Leighton Buzzard
Kaz
The idea in the NHS nowadays is that patients have full access to their notes. This can be a double edged sword in that unless you have someone going through them with you very carefully, you can get the wrong end of the stick and worry yourself needlessly or indeed not understand them (medical shorthand being what it is ) at all.
Your current measurements in isolation are not an accurate measurement of your progression - to get a true picture you would need to look at all your past history and look at everything in perspective.
One way of going about this would be to ring the secretary of your consultant at the hospital and explain that you really want to get a better picture of your KC and would it be possible to come in and talk to someone in more detail about your options and to explain what the measurements and so on mean as far as how advanced your KC is. By all means ask for copies of your measurements as it is your right, but I do advise doing this in conjunction with talking it through with someone at the hospital.
Once you have done that, you can then think things over and decide if you want other opinions. People are often very different in their search for knowledge of their condition. Some simply do not want to know! Others want every last detail and will search out every scrap of information from anyone they can because thats the only way they can handle things. You have to do what makes you feel best but that is not actually the same as getting the best treatment. Sometimes amassing lots of details and knowledge only serves to confuse and too many opinions, like cooks, spoil the broth.
So take things step by step. Start with the people you are seeing at the moment who have had the advantage of monitoring your eyes over a period of time and then if you still feel you need more information, work outwards from there.
I would be happy to talk to you further by email or pm if you want.
Lynn
The idea in the NHS nowadays is that patients have full access to their notes. This can be a double edged sword in that unless you have someone going through them with you very carefully, you can get the wrong end of the stick and worry yourself needlessly or indeed not understand them (medical shorthand being what it is ) at all.
Your current measurements in isolation are not an accurate measurement of your progression - to get a true picture you would need to look at all your past history and look at everything in perspective.
One way of going about this would be to ring the secretary of your consultant at the hospital and explain that you really want to get a better picture of your KC and would it be possible to come in and talk to someone in more detail about your options and to explain what the measurements and so on mean as far as how advanced your KC is. By all means ask for copies of your measurements as it is your right, but I do advise doing this in conjunction with talking it through with someone at the hospital.
Once you have done that, you can then think things over and decide if you want other opinions. People are often very different in their search for knowledge of their condition. Some simply do not want to know! Others want every last detail and will search out every scrap of information from anyone they can because thats the only way they can handle things. You have to do what makes you feel best but that is not actually the same as getting the best treatment. Sometimes amassing lots of details and knowledge only serves to confuse and too many opinions, like cooks, spoil the broth.
So take things step by step. Start with the people you are seeing at the moment who have had the advantage of monitoring your eyes over a period of time and then if you still feel you need more information, work outwards from there.
I would be happy to talk to you further by email or pm if you want.
Lynn
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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
Morag,
Vic has it spot on. The post to Eddie was to notify him I had sent a private message. Depending how you set your profile and internet security options it sometimes is not obveous you have a message waiting.
Where I work, I can see and psot on the forum, but unless I activly check private messages I have no idea one is waiting unless someone posts a message telling me.
We use these if we send personal information such as contact details which you might not want in the public domain or if you want to ask questios you might not want to be made public and so on.
Hope this explains things.
Vic has it spot on. The post to Eddie was to notify him I had sent a private message. Depending how you set your profile and internet security options it sometimes is not obveous you have a message waiting.
Where I work, I can see and psot on the forum, but unless I activly check private messages I have no idea one is waiting unless someone posts a message telling me.
We use these if we send personal information such as contact details which you might not want in the public domain or if you want to ask questios you might not want to be made public and so on.
Hope this explains things.
Gareth
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