UK Keratoconus Self-Help and Support Association

I recently had a c3r treatment without intacs performed on both eyes. This was epi intact , and performed in the out of my country.

When I asked for my pre-op and post-op records I was given the only pre-op orb scan.
Is this something I should worry about if they say that they dont have a policy of giving all the records to the patient?
Nothing has gone terribly wrong, but if something does do I have the right to the full records?
everything went so fast ... n i was kinda pushed into it... its traumatic

Another thing that is worrying me right now is the amount of advertising with eye surgeries .. who is right who is wrong
While researching for K treatments I came across heavy advertising which gave me temporary relief n a way to escape from reality.
Also statistics i saw was overwhelmingly fantastic
i am beginning to loose faith after the procedure ..
maybe I was a victim of ads that trivialize surgeries and exaggerate success stories

Hi

Would love to be able to put your mind at ease, but I'm afraid I'm no expert. I think everyone undergoing a procedure or eye operation's confidence wavers from time to time. All I can say is that time will tell. The main thing is that your eye and vision is healing and improving. I note that your procedure was epi-on and so that should help considerably. I know that there are differing expert opinions on whether epi-on or epi-off is more effective. Given I'm not a eye professional, I can't say, but I had crosslinking in both eyes with the epi disrupted (punctured). I would say that it's taken around 3 months before my vision started to improve (recovery from the op) and although the aim of the procedure is to halt progression, my vision has actually improved slightly. With regards to patient records, I live in Scotland but had private treatment at a private hospital in East Grinstead. I know they've been great in communicating with my GP so as to keep him up to speed with things. Guess there would be no harm in asking whether the clinic you went to could do that or give him records directly.

Regards

Caroline.

Sarkac, mate dont feel blue. It will fluctuate for abit and will take a while to settle down.

It just takes time

sarkac

The problem with talking about accessing records is that "rights to access" vary from country to country, so no-one can really say whether you have an automatic right or not. Additionally, you were also being operated on out of your own country, which could complicate it a bit.

The good news is that you have at least your pre op orb scans which give the base line level before you were treated. As you can go and get your own scans anywhere you want, you could just regularly monitor your own condition by doing just that. So if "anything should go wrong" you will have your own records of how your eyes have changed. The best way of doing this though, is to find an ophthalmologist in your own country to carry on monitoring your condition. That ophthalmologist can also request records from where you were operated upon. This will all give you back some measure of control, which is what I feel is the real basis of you being "blue" at the moment.

As for your questions about advertising and surgeries. This is a difficult situation. Without advertising, no-one would know about the new procedures that are developed all over the world. However, trying to get the balance right between "pushing success" and giving all possible downsides is difficult. I know surgeons who really make a point of talking about all the side effects and possible downsides (partly, I think, to protect themselves against possible law suits) with the result that potential patients are scared off having anything done.

What I will say in general to everyone, is that it is very easy to get carried away at the thought of new treatments. It is entirely human to concentrate on the positive sides and pay less attention the possible downsides, even if they are explained to you. It doesn't make a procedure any less valid if it doesn't work perfectly but your own expectation colours how you deal with it afterwards.

This is why I am charting a patient's progress with a new epi on CXL surgical procedure on my website. I am recording the ups AND the downs, with the permission of the surgeon and the patient, so that people can get a realistic idea of what can happen. As it is just one patient, it is NOT intended to be a blueprint of what would happen to anyone else, as everyone is an individual case.

Don't beat yourself up about "rushing into surgery" - you did what you thought was the best for you at the time and there is only so much "second guessing" any one person can do about any surgical procedure. What is great is that you took charge of your condition and did something about it. Now you need to keep that momentum going and find a specialist in your own country who can monitor your progress.

All the best

Lynn