Scleral Lenses - London or Boston?

[ScottishDave]

Hi,

I feel at some point during this year I will more than likely give Scleral Lenses a try. Personally I don't think they will be the massive benefit to me that I would like but I feel I will probably give them a try under the "you never know until you try" banner.

I live in the UK so obviously going via Moorfields or direct to Ken Pullum in London will probably be the most cost effective route for me however I would like to give the lenses the best chance of success so I was thinking that I might be better off going to Boston.

What are other peoples opinions on this?

Thanks

[DCRdryeye]

Ken Pullum has a very good reputation. He's closer to you...so you should see him.

[Hopeful2]

I would find out first what the fitting procedures entail. I have heard of people going to sclearal fitters and needing to return a week or two later for another fitting, and going through this cycle five or six times. Do you have that kind of time to invest in that kind of fitting process. I would also find out what kind of vision issues they would be able to correct for, if you have vision issues as well as dry eye. Can you talk with a few people who have been through the process with the doctor that you are considering? Can you set up a preliminary appointment where you can bring you list of questions? You also need to consider follow-up care . . . Boston is a long way to go if you develop some issues down the road.

I completely understand your desire 'to give the lenses the best chance of success 'and you already know that Boston would have the intellectual expertise and the equipment on site to address your dry eye needs (scleral lenses). However, it is likely to me a more expensive route (time and money). If neither of these is a big concern, go to Boston. . . my two cents worth

[littlemermaid]

Hello, Fife! I think UK Keratoconus group has discussion on scleral lens availability in Scotland. Sclerals are available in English regional teaching hospitals, may be service in Edinburgh, Aberdeen, Dundee (not sure how they're treating keratoconus but they have an ongoing study so it's worth asking the cornea consultant for advice on scleral lens fitting in Scotland - email or letter would do it) to consider.

Maybe there's more choice at Moorfields, maybe speak to Ken Pullum's base in Hertford for advice and info on current UK services and choice of lens and expertise and follow-up eg what service to correct a bad fit and monitoring. I think you need a vibe on how busy Moorfields actually is on this (unless you get a quote for Private although with multiple travel and hotels could end up cheaper to go to Boston...). Hopefully, someone will reply with Moorfields experience. Maybe the question is how far would/could they go on scleral lens fitting service in the current UK NHS in different hospitals, and could you get there and back for multiple appointments.

Reading here, I think people say rubbing at the rim from a bad fit is mostly what makes a lens a fail, and Boston do a refit over the weeks until it's good. It would be good if people here could tell us if they've had problems with lenses for other reasons. You have a right to copies of your NHS notes (any trouble from Medical Records, go to Medico-Legal for an application form, maybe call it 'transfer of notes' if you need to, see NHS Choices Access to Medical Records - Scotland's a bit different but the law's the same) to send to Boston for assessment on what benefit to expect with your history and current condition. I can see why Boston would be a fun trip for you and your wife if you wanted to give it your best shot and there's not resulting financial hardship. Same as Hopeful2 says for 2c, personally I would be tempted by the expertise if I could afford it as a pioneering medical tourist but I love doc-shopping and it is an expensive habit.

It's a question of investigating what is actually available to us in these different services. Certainly I would not hesitate to use UK NHS/research hospital services afterwards, in fact I think there would be interest in eg Aberdeen or Dundee. Local follow-up through the years is very important for us but I think you've got a good relationship with your home ophthalmologist and s/he's always up for a referral and monitoring? Would be good to hear whether this works for you, wishing you the best.

[ScottishDave]

Thanks for the suggestion re. the Keratoconus group. It seems one of their mods is from Scotland and he has suggested Gartnavel Hospital in Glasgow for many people on their forum as fitters of Sclerals.

It's certainly food for thought either massive expensive for Boston or Ken Pullum but perhaps with a chance of a better fit.