A couple of questions for anyone that has had INTACS and C3-R procedures

[jeijma822]

Hello there,
I'm new to these forums and wondering if anyone has had any combination of the INTACS and C3-R procedure done, and if so, what was your results? I live in the USA, am 30 years old and have lived with Keratoconus since I was 18. I do not wear contacts, since the last time I was able to see, was nearly 4 years ago and I had a piggyback system, of which I could only wear for at most an hour until the uncomfort of the double contacts actually worsened my eyesight. I was pushed toward Dr. Brian Boxer in Beverly Hills, and just got a quote for nearly $20,000 including travel. That seems absolutely ridiculous for having nearly only an hour of actual procedure. An additional question if anyone has any experience consulting an eye doctor abroad, as they say...medical tourism for such operations. I'll search through the forums and see what I can come up with, but if this isn't deleted, I haven't found what I was looking for so any help would be appreciated.
Thanks!

[Anne Klepacz]

Hello Jeijma and welcome to the forum.
As you've probably realised, this is a UK based forum so what's available here and how we pay for it is a bit different (though we do have some forum users from the States). Here, not many people will have had the Intacs and crosslinking combination though we have increasing numbers who have had crosslinking, especially since it's becoming more available on the NHS. So we're lucky in not having to pay the very high costs you quote. While I know some people have gone for 'medical tourism' the main problem with that is aftercare.
One thought though - if it's 4 years since you last tried contact lenses, it might be worth investigating them again. Each year brings new developments in different lens types and the possibility of greater comfort with lenses. Have you ever tried scleral lenses (the ones that cover the whole eye) or the various semi and mini sclerals that are coming on to the market? There are also specialist soft lenses for KC - I don't know what's available in the States, but here we have lenses such as Kerasoft IC and a new Novakone soft lens for KC.
Anne

[CrippsCorner]

Hi and welcome. I am sorry to hear of your struggle. That's a great suggestion from Anne, technology is always changing and there could be something more suitable out there for you now. I started with RGP's that were very uncomfortable and even though I got slightly worse vision from soft lenses, that's what I ultimately opted for as the comfort is much better. In fact, I just got some new lenses called CooperVision Proclear toric XR which are just phenomenal... 16 hours wear time without an issue!

Be aware that CXL (C3-R) is unlikely to make your vision any better. Me... well I had good and bad results from it, but ultimately I'd still recommend it, especially as (unfortunately) it sounds like you have less to lose than me. I know it's not ideal to think about, but have you considered a transplant? Probably your best option for good eyesight again if lenses cannot help you.

[jeijma822]

Thanks so much for the reply's!
I am aware that you are doing things differently over in the UK as far as payment goes, but I cannot for the life of me find a proper forum concerning these procedures here in the U.S. Along with my recent research, I have found that there are numerous new contact lens options and I will be contacting my optometrist soon to discuss such things and move forward from there.
I was contacted by a few doctors in India who all seem to have high credentials and proper care for a C3-R and INTACS procedure, all at a MASSIVE fraction of cost. I like my country, but god help you if your condition is not covered by insurance (which my carrier does not cover). I recently have had time to actually devote myself to solving this problem, as I was extremely upset for years with the lack of care and guidance by my physicians on what exactly to do to help my situation.
Thanks again, and if you have anymore information or experiences please let me know, and I'll keep you informed with future decisions and progress that occurs.
Oh and P.S. my ability to have routine checkups by Dr. Boxer would be nearly the same as if I was to travel back to another country, as I do not live in the state that he performs in.
And P.P.S. Does anyone know if there would be any differences in the procedures being done in another country? I would imagine that the riboflavin drops and the INTACS would be the same throughout the world if done be a reputable physician.

[CrippsCorner]

It should be the same, after all it is quite a simple procedure, truth be told. Although that doesn't mean there can't be complications as I unfortunately found out first hand... how much does it cost in India? I was unable to get CXL performed on the NHS in my area; it cost me £1,500 per eye ($2,250)