Contact lenses advice please

[sammyvine]

Hello all

I am new to the forum.
I was diagnosed with KC almost 3 years ago after a routine check up at a Boots opticians. I was referred to Royal Free hospital in London and the doctor confirmed I have KC.

I was sent to a an opticians called Miltons in Hampstead who specialise in providing hard lenses for KC sufferers.

However the lenses I have being prescribed fall out of often and I struggle to put them in. Is this a common problem?
I would prefer glasses but I do not get good vision with glasses at all.
Also Royal free hospital haven’t offered me cross linking...should I ask about it at my next appointment or do the NHS only offer cross linking in certain instances?
Many thanks

[Lia Williams]

Hello Sammy,

Contact lenses shouldn’t fall out. It may be worth going back to your optician and getting the fitting checked. Sometimes it is necessary for the prescription to be tweaked to get an optimum fit for comfort and vision.

With practice contact lenses become easier to put in and remove. I think that we alll wish we could just wear glasses to see; but we need contact lenses to correct the irregular prescription that we get from keratoconus. However some people find it useful to have a pair of back up glasses to wear first thing in the morning and last thing at night.

Lia

[sammyvine]

Hello Sammy,

Contact lenses shouldn’t fall out. It may be worth going back to your optician and getting the fitting checked. Sometimes it is necessary for the prescription to be tweaked to get an optimum fit for comfort and vision.

With practice contact lenses become easier to put in and remove. I think that we alll wish we could just wear glasses to see; but we need contact lenses to correct the irregular prescription that we get from keratoconus. However some people find it useful to have a pair of back up glasses to wear first thing in the morning and last thing at night.

Lia

Thanks

Yes I am taking baby steps and increasing usage slowly.

Do you get 20/20 vision when you wear your contacts?

I have a pair of glasses but don't get good vision with them at all. Just a slight improvement.

[CrippsCorner]

I've just replied to someone else asking them if they've tried regular astigmatism soft lenses... why opticians are so eager to push RGPs as a first port of call I do not know. Were you told if your KC is mild/moderate/severe? If mild/moderate definitely try softs first - I use Bausch+Lomb PureVision 2 (for astigmatism)

It's worth asking about CXL. Have you had a topography scan? They will need to monitor your progress, usually over a minimum of 6 months. I had to pay privately for my CXL - Postcode lottery but I believe NICE guidelines have changed since and a lot more places can offer it on the NHS now.

[Lia Williams]

Do you get 20/20 vision when you wear your contacts?

Yes, I do get good vision and comfort with my contact lenses. Although the fitting of them hasn't always been straightforward.

As CrippsCorner has said there are other types of contact lenses for keratoconus, as you say that your lenses fall out it may be that a change to your prescription, or a different type is required.

Lia

[sammyvine]

I've just replied to someone else asking them if they've tried regular astigmatism soft lenses... why opticians are so eager to push RGPs as a first port of call I do not know. Were you told if your KC is mild/moderate/severe? If mild/moderate definitely try softs first - I use Bausch+Lomb PureVision 2 (for astigmatism)

It's worth asking about CXL. Have you had a topography scan? They will need to monitor your progress, usually over a minimum of 6 months. I had to pay privately for my CXL - Postcode lottery but I believe NICE guidelines have changed since and a lot more places can offer it on the NHS now.

Hey

Yes I have been going to the hospital every 6 months for a about 2 years now and then I go they do a scan. They have never mentioned that I need cross linking to me but I am due to go back in the end of May so I will definitely ask how bad my KC is etc...
Sometimes with the NHS you feel like they want to save money etc and will only do it if it absolutely needs to be done. With private, they obviously take more care. How much did you pay for yours may I ask?

The hospital send me to this independent opticians who obviously make lenses for KC sufferers so I will mention to the optomotirst about trying other lenses.

[sammyvine]

Do you get 20/20 vision when you wear your contacts?

Yes, I do get good vision and comfort with my contact lenses. Although the fitting of them hasn't always been straightforward.

As CrippsCorner has said there are other types of contact lenses for keratoconus, as you say that your lenses fall out it may be that a change to your prescription, or a different type is required.

Lia

This may be true but the last two days I have worn them they haven't fallen out. I may have not been inserting them properly as I have been struggling with that but I do feel I am getting better.

I am due back in the hospital soon for a check up to see how I am getting on with the lenses so I will see what they say.

[CrippsCorner]

I've just replied to someone else asking them if they've tried regular astigmatism soft lenses... why opticians are so eager to push RGPs as a first port of call I do not know. Were you told if your KC is mild/moderate/severe? If mild/moderate definitely try softs first - I use Bausch+Lomb PureVision 2 (for astigmatism)

It's worth asking about CXL. Have you had a topography scan? They will need to monitor your progress, usually over a minimum of 6 months. I had to pay privately for my CXL - Postcode lottery but I believe NICE guidelines have changed since and a lot more places can offer it on the NHS now.

Hey

Yes I have been going to the hospital every 6 months for a about 2 years now and then I go they do a scan. They have never mentioned that I need cross linking to me but I am due to go back in the end of May so I will definitely ask how bad my KC is etc...
Sometimes with the NHS you feel like they want to save money etc and will only do it if it absolutely needs to be done. With private, they obviously take more care. How much did you pay for yours may I ask?

The hospital send me to this independent opticians who obviously make lenses for KC sufferers so I will mention to the optomotirst about trying other lenses.

You say the NHS may want to save money, but private wants to make money, so therefore may push you into things that aren't necessary! I'm not saying that's what happened with me... but either way, I'm down on money and my vision is worse too. Mine was £1,500 per eye.

Does your hospital not have its own optometrist department? I found going private for regular appointments so expensive, I demanded to be seen at my hospital - Which worked, and now I'm on good terms with them as it goes.

Good luck!