Worth it to travel to Dr Brian?

[kc44]

I was given the tragic news a while ago that I have Keratoconus. I have noticed double vision since a few years ago, but thought it was just the deteriorating eyesight and never really looked into it besides once when I went to the optometrist and he said I was absolutely fine..... I wish it was caught then.

Anyhow, I searched and searched and searched and now I want to know if Dr Brian Boxer of LA is worth the hassle and money for his portfolio, (even though most of his patients testimonials are second day and not a 2,3,4 year follow ups) to go to him. I live in USA but around 6-7 hours away by flight. The prices I got off Dr Brian are 1.5-1.9X more than what a normal doctor usually charges.

Here are my two options

Option 1 -
Go to Dr Brian in LA, flights, expensive hotels and get C3R and INTACS done. CK seems useless to me since the effect is only temporary and lasts a year or two or perhaps 3. So definitely not worth it to spend that much money on it. The cons to this would be now I am 7 hours away via flight from the person who did the procedure.

Option 2 -
Go to a local doctor, participate in a trial get CXL (Epi-on) and maybe INTACS and pay almost half the price that Dr Brian is charging me. However, now I have access to the doctor who performed the procedure on me.

I am still debating on INTACS as I see mixed reviews.......

[Anne Klepacz]

While it's obviously upsetting to be diagnosed with an eye condition, I wouldn't call a diagnosis of KC 'tragic' when the majority of people with KC live near normal lives and, as you've discovered, there are a number of options these days. Even those of us for whom the invention of crosslinking came far too late manage to live fulfilling lives with the help of contact lenses or, in a minority of cases, a corneal transplant. So a diagnosis of KC isn't the end of the world!
I'm not sure anyone here can help with your decision though. This is a UK site (although we do have the occasional visitor from the States) so we're in a rather different position. You've probably found the US organisation, the National Keratoconus Foundation, where people are more likely to have faced a similar dilemma. All I can say, as someone who has had grafts, is that I really value being just an hour away from the hospital where I've had all my treatment.
As for Intacs, you're right, they seem to work well for some people and not for others, with about 10% being removed because they haven't helped.
All the best, whatever you decide.

[Pauly]

I have done much research trying to make up my mind on this same subject. I have asked many cornea specialist about this. If you have a place by you that will do CXL and Intacs then go there. Dr. Brian from what I understand is a good doctor but his procedures are no different then you get else where. It is standard epi on CXL and his assistants mostly do this procedure. If you trust that the doctors by you know what they are doing I would go local. Dr. Brian costs so much because he s in Beverly Hills. Hope this helps.

[Pauly]

How old are you? If you are 30 or over I would find a good corneal specialist and keep a eye on how it progresses and if he thinks you need it get CXL. Otherwise try contacts first. I can tell my good eye has changed some but my charts show not much progression and I am told to come back next year. I am 35 now and I am trying to get fitted for contacts now. I think surgery should be last resort but that is up to you.

[kc44]

While it's obviously upsetting to be diagnosed with an eye condition, I wouldn't call a diagnosis of KC 'tragic' when the majority of people with KC live near normal lives and, as you've discovered, there are a number of options these days. Even those of us for whom the invention of crosslinking came far too late manage to live fulfilling lives with the help of contact lenses or, in a minority of cases, a corneal transplant. So a diagnosis of KC isn't the end of the world!
I'm not sure anyone here can help with your decision though. This is a UK site (although we do have the occasional visitor from the States) so we're in a rather different position. You've probably found the US organisation, the National Keratoconus Foundation, where people are more likely to have faced a similar dilemma. All I can say, as someone who has had grafts, is that I really value being just an hour away from the hospital where I've had all my treatment.
As for Intacs, you're right, they seem to work well for some people and not for others, with about 10% being removed because they haven't helped.
All the best, whatever you decide.

Thank you for your input and I guess the more I come to terms with it the more I realize it's not as "tragic" as my research on google had provided me with initially.

I have done much research trying to make up my mind on this same subject. I have asked many cornea specialist about this. If you have a place by you that will do CXL and Intacs then go there. Dr. Brian from what I understand is a good doctor but his procedures are no different then you get else where. It is standard epi on CXL and his assistants mostly do this procedure. If you trust that the doctors by you know what they are doing I would go local. Dr. Brian costs so much because he s in Beverly Hills. Hope this helps.

There is Dr Hersh of CLEI who is close to me. He has done some extensive research on Keratoconus and written papers on findings, he does seem like a qualified doctor, but charging almost a grand less than what Dr Brian is charging for CXL per eye, not sure about intacs. However, I feel like Dr Brian has been doing EPI-ON since 2003 at that time it wasn't even widely known to be effective and now it turns out that it is very effective indeed. So it does seem like he knows what he is doing or have been for the past 10+ years.

I am in my late 20's however I started noticing double vision in my early 20's thinking it was just my eyesight deteriorating.....if only I knew then again, if only our government tried making an effort in informing young and old people about this disease. Recently I feel like my eye sight has been deteriorating at an increased pace; hence the move to desperately find the perfect doctor and have him perform the procedure.

I am still confused, whether to have CXL first and then INTACS if needed, but Dr Brian recommends doing INTACS with C3R because it's easier to reshape the cornea pre-CXL. Any inputs?

EDIT - I read your thread and how you decided to cancel your procedure. I think I'd still go ahead with the procedure because it does make the cornea stronger and prevents progression. If I understand correctly, progression can halt itself without treatment, but it can progress anytime without any warning, better be safe.

[CrippsCorner]

CXL is not a one solution fixes all though... I've had CXL on both my eyes, with one it was successful and there's been no progression. However with the other it's now far worse, and will probably never be as good as it was pre-CXL. It's just one of those things. Do I regret it? Well yes, it's easy to say that, but I was driving myself mad worrying about whether to go ahead with it or not; at least I don't have to do that any more!

Ultimately I would still recommended it, but only if you've kept track on progression. Have you have any Pentacam scans performed yet?

[IvanKC]

I just wanted to share that I had intacs and CK with Dr. Brian and I am really happy about it. The firs two three days though vision was so blurry, I could barely navigate myself around Beverly Hills. I was really desperate because I saw all these videos where people basically said that the very next day they had their vision back. Nevertheless, after the initial shock things slowly got back to normal and vision became sharper and sharper. I can now see 20/25 to 20/30 with this eye with just regular eye glasses. I have to admit though that vision is not as sharp now, 3 years later, as it was in the beginning , because the CK wore off. With that being said, I would say that only the uncorrected vision degraded, I was literally able to see 20/40 with that eye 1 week post surgery. Thank god, vision with glasses remained constant at 20/25 - 20/30.

[Anna Mason]

I was diagnosed with KC in 1965 it's by no way tragic just something you need to deal with.
Mine has been managed with different contact lenses my brother has it and had a corneal graft. My early problems were due to old fashioned lenses and my mismanagement.
Don't jump into any hoops without consulting and thinking it through and don't forget that Dr Google always provides worst case scenarios.

[IvanKC]

I agree with Anna that people should rarely consult Google when thinking about a medical problem/procedure. Before my transplant, I was checking different forums (this including) and it seemed as if every single graft was rejected or people had poor vision afterwards, or generally things somehow didnt work out. The reality is that statistically less than 5% of the grafts fail. But the thing is that people with successful outcomes are much more likely to want to move with their life and forget the unpleasant experience as fast as possible, whereas people with problems are naturally inclined to share the problem and ask for advice/ warn other people. For this reason, the negative reports are significantly over-represented.

[Samty]

I am currently considering going to Dr Brian for his proprietry epi- on procedure but I too am concerned about the cost and whether it really is as effective as epi off in halting keratoconus. Dr O'Brart ( respected UK surgeon) has reservations as to its effectiveness but Dr Brian's office countered that no one other than Dr Brian has performed the proprietary epi-on treatment. This leaves me in a difficult situation. Should I go for Dr O'Brart's new 'iontophoretic' epi on procedure with good 24 month follow up results or Dr Brian who has been performing his treatment since 2003 and who has a 0.7% re-treatment rate ( though I presume this is just his re-treatments rather than others fixing a cock up).

I have to say at this point epi-off is not an option as I already had this on my left eye and developed corneal neuralgia as a result. I still have this and its shit though at least thanks to some intensive acupuncture it is not as bad as it has been for the past 1.5 years.

The options now for epi- on seem to be Dr Brian or Dr O'Brart or Dr Pinelli ( Switzerland).

Btw , I live in the UK so very expensive for me to go to the US.

Anyone chip in?