Thorny questions about expert advice...

[Lynn White]

Hi everyone...

I'd just like to say a few words about asking advice from board members about what you have been told professionally. This arises from Kevin's thread where he was asking advice from members here about what he had been told by the hospital. I didn't want to hijack his thread so decided to start a new one.. besides which, this is something that I think needs addressing.

If you are new to the boards and are asking advice, most of you really do not give enough information about your eyes for anyone to give an informed opinion. This is not surprising, as you yourselves are new to the condition and do not know what factors are important.

To be honest, no-one can give a proper opinion about your eyes unless they have examined you, got all the salient facts and are expert in the condition. The people best placed to answer your questions in a perfect world are your consultant and optometrist.

However, this world is not perfect and sometimes you can leave a consultation feeling more confused than when you went in. Questions you should have asked, you only think of hours later. Things you should have told the professionals about your life and how it is affected by your KC, you forget to mention.

So then you come to the boards and ask opinions here.

I have noticed over the time I have been here that almost no-one actually tells the full story first time round.. simply because they don't realise that certain facts are important. Board members can only react to what they are told and often go on their own experiences and so answers can be over the top for people who have mild KC.

As others have pointed out here.. members of this board generally are of the more severe end of the KC spectrum. Those with minor problems hardly ever reach this board, or if they do, do not stay here, as their experiences are different to those with advanced KC.

However, those who have lived with their condition for a long time have a wealth of experiences to offer everyone, including professionals. I myself have learnt a great deal by listening to patients over the years and even more by being here, on this site.

The key here is better communication. Your professional advisor cannot help if you do not tell them relevant points.. you cannot tell them if you do not know what is relevant. Chicken and egg.

This site is very valuable in explaining the KC experience from personal experiences. However, it cannot be a substitute for professional opinion which is based on clincial experience of looking at your eyes.

Yes, opinions may vary as with any medical condition... this is a fact of life. It does come as a shock to many that medicine is not absolute... that Dr A can disagree with Dr B quite vehemently... but it has always been so, throughout time!

Please bear all this in mind when asking for advice. I , myself, would always say go back to your own professionals and ask. However, you may well have to discuss things here first before you know the right questions to ask!

I hereby throw the floor open to discussion!

Lynn

[GarethB]

As this board is so active now and there are nearly 1000 registerd uses where only a small proportion post.

It would be rally nice to hear from all of them to see if all those registered are representative of the KC population rather than the extremes.

I think one of the other issues appart from new and in some cases the more regular posters not putting enough detail because wanting to keep posts short an concise; some replies contain too little detail so can easily be taken out of context. Completely unintentional, they just want to keep posts short.

Perhaps another think for the FAQ section would be the basic (if there is such a thing) information that someone should post when they want advice/shared experiences. This is probably harder than it looks to someone like me as a non-optomotrist.

Then as John continues his improvements on the board that some of these become parts of our profile for others to look at and also to help the support group commitee to see where we lie regarding the bias towards extreme bad cases to the cases where life is quite manageble if that is possible.

I know the hospital say my KC is quite extreme, but now we have come up with a way of managing the lens wear I consider it quite managable and of little impact to my life!

Well at least knowone said KC was simple

[Sweet]

Yes it has been said on a number of occasions here that we should always ask our consultant / optometrist about our exact care, as they are the ones who see us, and this is very true. We can never post about our eyesight and get someone to advise something, even if they are qualified as they can't see our eyes!

I think that for those of us who have been here a while and have indeed met each other we learn to not take everything here as the exact truth, and realise that it is only an opinion from someone else with KC! To new members though i can understand completely how they could suddenly take things to heart, as finding others with KC who can relate to all the problems we have is a total relief! We suddenly see that we aren't alone in this and that other people have indeed coped, sometimes with a lot worse, and they are managing.

The way i take this board is one of support and a big learning experience. It is really hard to live with not knowing what to do when everything seems to fail and we can't get a lens to fit. Or when our eyesight suddenly gets a lot worse and we can't get an appointment for months!! This is when we can really find this board helpful. It is also a nice place to come and vent, as we can all get very annoyed at times with how our eyesight is getting worse and the long waiting times etc! There isn't a better place then to be than here shouting about it, as people DO understand!!!

I have learnt so much about the condition here and in new lenses / treatment that i would not know about otherwise. It is also extremely helpful to hear other peoples experiences with KC and certain lenses, as it is all very good an optometrist giving them to us but they aren't the ones who wear them with KC! When we get a sudden problem, or something which we feel stupid to ask professionals we can always come here and post about it!

I think that people who come here and post should keep a very open mind about the replies they get, and indeed how they take it. Thinking about the ideas here and talking to our specialists about them is exactly what this board is good for!! Without someone posting about piggy backing lenses i would still be in pain and unable to wear my lenses long enough to work! My bank manager i'm sure would like to talk to me then as well!!

Am hoping that everyone here continues to post and give their opinions on the posts we get, as without the very important people here who have KC this board would not run!

We are all on a journey with KC, each starting at completely different places and having different obstacles to overcome, but the main point is that whatever we wish to discuss someone has undoubtedly been there first and can say how they coped with it! This is invaluable to those who follow on with the same problem, as while we all need specialist advice on our own eyes and should listen to what professionals who care for us say, reading about others in the same position and learning how they cope is a big learning experience! We should just be very aware in understanding that all posts here are someone elses opinion, and not the exact way to deal with everyone with KC.

Hehe ... but this was just MY opinion!!!!!

Sweet X x X

[jayuk]

Lynn

The last paragraph of your message hit the nail on the head. I think its agreed by the majority that its always best to take the advice of the optician/consultant.

However, experience has shown that this kind of develops itself into a vicious circle. Let me give you an example. Grafts.....how many people with KC would have had a graft which was not needed if they went straight to a consultant from a GP?..How many do you think have had a graft whilst still getting 20/40 with lenses?....I would imagine a large percentage.....as a mere 10 mins research on the Interweb will confirm this......So what do we do?

Many have posted on the board, basically saying that they have just been diiagnosed and are scared and dont know what to do etc etc.....(as we all did !). The responses that are provided on this board are worth there weight in gold for these people......I would suspect many would not contest that.

Now, and I speak for myself here as thats aall I can do, I generally wrap around my responses against what experience I have had and what I had to do. Now if a poster takes this advice as gospel than we clearly have come across an issue here.....either the purpose of this board has not been correctly put across, or we have posters who have failed to recognise the aim of the board.

In the history of this board I have yet to see any poster actually go away and act on a response alone.....its generally discussed in threads and messages are exchanged.......

Now going on from something Claire said about always listening to your consultant, I remember that Claire wanted her Sutures out against all odds and was basically asking/telling her consultant to remove them?.....He has a duty to look after he patient...but using his best judgement did NOT remove them.....it was only after a few weeks where Claire calmed down and thought about it that she realised that taking them all out aat that time would have been disasterous.........My Point?....This was a little role reversal to the issue we have here.......her post here regarding this issue was met with a number of responses all saying the same thing.."Calm down girl" . It was after this that she may have realised that what others are saying maybe right and to wait and bind time...........so this board served a very valid purpose!.....

There have been countless examples on this board where people have posted and they have recieved many responses and the poster has used there common sense and taken things forward from there.....

But to actually say that a poster would go away and act solely on a response from her may actually be insulting the intelligence of the poster.........however.....for arguments sake; lets say that we dont have the brightest lightbulbs in the chandeliers.......it would then be the Respondent duty to ensure his reply and experienced based message covers as much as possible so as not to make this person jsut act solely on their advice....

That's alll really

J

[Val G]

For my two-penneth on this one.......

Even though we are dependant on the medical professionals, ultimately our health care is our own responsibility. I don't think my daughter would be alive today if I had not acted against my GP's opinion. In most cases of KC there are alternative stategies on offer, as Lynn points out even the experts don't always agree. Many KC sufferers are faced with various options and huge decisions in the course of our treatment. These are best faced with as much information as possible and the value of the opinions and personal experiences of the many well informed users of this forum contribute to this.
No respondant would claim to be in a position to give a poster better advice than the professionals that examine them.Users should understand this forum for what it is - a valuable source of information, support and sharing of experiences.

[Anne Klepacz]

Thank you Lynn for an excellent post and to eveyone else who has contributed to the discussion. Perhaps we should make this thread a sticky, so that people new to the board are likely to read it and can put things in context.
Anne

[GarethB]

Before entering the Forum area, there is a disclaimer which we all need to remind ourselves from time to time, both from sharing experiences/giving advice and when posting a question to asking for help and advice.

It is brief and to the point.

[rosemary johnson]

For my two-penneth on this one.......

Even though we are dependant on the medical professionals, ultimately our health care is our own responsibility.

Hear here!
Rosemary

[Lynn White]

I was thinking of this thread all day as I was advising a patient only two days ago that I thought he had KC and was arranging a topography for him. It struck me that however much I reassured him, if he found this board and read the posts he would be seriously worried before we had even got any firm diagnosis from an ophthalmologist. My worry is intensified by the fact he has not got back in touch yet. Obviously what people do is go straight to the net and type in KC and off they go!

I know many people here have had bad experiences finding out they had KC and my intent here is to try and make the adjustment to accepting the condition as easy as possible.

Its the people that just look at this site and don't say anything that worry me. One minute you are having a routine eye test, the next, you are looking at a site that is discussing grafts and losing driving licences etc. It can be seriously scary!

I suppose this is a practitioners view. In pre net days, you could gradually ease someone into accepting a condition such as glaucoma, macular degeneration and so on. Now patients have access to a whole world of information that may or may not be relevant to them and they often march into the practice armed with downloaded print outs.

We as professionals have to adjust to this new level of information access and sometimes it isn't easy.

Thanks to everyone contributing to this thread.. as Anne says, this could well be a sticky that newbies would benefit from. Gareth....! Ever the one with ideas! Perhaps we could have a short questionaire that people can fill out voluntarily on registration whereby they then signal level of KC and who they have seen so far etc etc... This could then either be part of the profile or kept private and only accessed with permission. This might well save an awful lot of repetition.

If this idea proves interesting, I am willing to help design it.

Lynn

[Sweet]

Yes, it is the same with patients that we see. Some go away after being diagnosed with a new condition or after a new drug prescription only to come back soon after with loads of printed information about ALL the side effects, costs and medical jargon that sometimes leaves us lost!

I do think that patients need to be given information at a level that they can understand, and think that it is good that some do want to ask questions and learn about their health. It is worrying though at times in knowing exactly how much we should say. Too little and some think that we are hiding things from them, but too much and some get totally confused and panic. I know that my first consultant telling me at 14 that i would need a graft in my 20's before i went blind did NOT go down well!

Am just hoping that new members here will be able to find some support and not sink with all the information and posts on surgery. We don't mean to scare them off!!

Sweet X x X