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Post Info TOPIC: Why you should NEVER have Crosslinking or TPRK done.


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Date: Mon May 1 11:05 PM, 2017
Why you should NEVER have Crosslinking or TPRK done.
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Alright so this is my warning to you guys after four years of pure hell from two botched crosslinking procedures. You can choose to do what you want with your eyes, but these are things I wish I knew before I proceeded down this rabbit hole made of nightmares that has destroyed my career and life and left me in constant pain and misery.

I am a 35 year old male from TX. USA who was at the top of my game in my career and earning potential as a 3D Artist and bussiness owner. Due to keratoconus/ectasia being worst in my right eye, I had Epi- Off Crosslinking first. While the procedure itself was fairly painless (4 mins), the scrapping of the epithelium gave me severe cornea scarring and haze that frankly was just as bad as the Keratoconus. Well is this normal you ask? Its hard to say, but if you have it done MAKE SURE they do not hand scrap it off using the brush. Studies have shown this creates a non uniform wound that regenerates in such a uneven way it has a higher chance of scarring. Make sure it is done by a laser that creates a perfect circle this way it heals more uniform. If the doctor has never heard of this method. Get the fuk out or acknowledge you are putting yourself at risk for a very serious side effect (that is actually very common with CXL).

To add to that, and probably even more important, MAKE SURE you have either autogolous serum drops or preferably PRP (platlet rich plasma) which contains much higher NGF (growth factors). Keep in mind, very little blood, if any, reaches the cornea so when they cut on your eye to put the drops in and give you steroids, its NOT ENOUGH to prevent delayed epithelium regeneration and prevent haze, let alone heal your damaged nerves. If you have had blood serum or plasma drops, it would regenerate within a day or two and avoid hazing and scarring all together. Many doctors dont do this, especially in the states, because either they are to incompetent to research it (yes really), but more so its just bad marketing. To tell patients they need to go spend another few hundred dollars to go have there own blood put in there eye for a safer healing would turn many away. Instead they just tell you to buy some artificial drops and your good to go, problem solved. I know some doctors in Europe require this, but most doctors care more about making money than taking a chance at bad marketing and losing out on the thousands of dollars your giving them.

And to add to that, when they tell you to put `artificial tears` in the eye constantly for the next few months and weeks, what you should REALLY be putting in your eye is the blood serum/plasma since the natural growth factors is what aids in healing. Artificial tears have ZERO growth factors and really do nothing at all besides temporary sooth your eye. Any doctor who uses artificial tears over serum or plasma is simply incompetent or unethical (cutting corners, saving costs etc). I cant say it enough, run as far away as you can from these doctors even if it means traveling to another country and finding a more competent ethical doctor. 

That brings me to my last and final point, NERVE DAMAGE. The Cornea is the most powerful pain generator in the human body, 400 times more dense in nerves than dental pulp and skin. When the UVA light is being shun on your eye, it is 100% damaging your nerve fibers. Ever hear of people with changes in light sensitivity post CXL? This is why. And this holds especially true if you have CXL + TPRK which is even more invasive and destroys even more of your nerves. Read the results of people who had this done on the site, most regret it years after with either dry eye or light sensitivity. Your cornea nerves control and regulate your tear production, so when they are damaged (which they always are during these surgeries), that is where all these `unknown`side effects stem from. All the more reason to INSIST on having blood serum/plasma drops to help heal and regenerate the nerves.

Otherwise it puts you at risk for Cornea Neuralgia which is a technical name for cornea nerve damage that when left unhealed or treated, turns into constant burning and stinging 24/7. The intensity and consistency of Cornea Neuralgia is incapacitating and most ophthalmologists and elective surgeons are WAY behind on the latest research linking this condition to elective procedures. Most have never even heard of it and only a special hard to find machine called a Confocal Microscopy can examine and diagnose this condition by zooming in 600x more than a slit limp at the nerves.

Thus they dismiss it and just claim its dry eye or simply a complication such as `sensitivity to light`. In reality its NERVE DAMAGE and will progress into Cornea Neurapathy if left untreated. This is why it should be required for patients to be taking blood serum or plasma to help heal these nerves post procedure. Again, if your doctor says otherwise... RUN AWAY as fast as you can. They are just trying to get your money. This is how they make a living, they could give two chits less about your eye health. 

This is what happened to me on my Epi-On left eye. The procedure itself hurt like crazy and becuase its `Epi-On` doctors favor it not so much for your benefit as there own. I cant stress this enough, especially if you are in the states. Epi-On is NOT for your benefit as much as the doctors. For one, they dont require a surgeon to cut the top layer of eye, so they can and will stick either a Optometrist, or technician, or more likely a front desk receptionist (as happened to me) who really has no idea what is going on other than putting this drop in every 2 mins and this other drop in for a few minutes. In my case, my doctor who I trusted with my life, did not tell me he was not going to be there during the actual UVA light part and he left the office for the day. I was in so much pain and asked the female technician doctor if this was normal and that I wasnt sure if is hould continue only to be told its perfectly normal and in a few minutes all my problems will go away and ill be cured. 

What started as light sensitivity grew into severe cornea pain, I was told this was normal and part of the healing process and take more steroids and artificial tears. Had I been taking blood plasma or serum (like I am now) it would not have progressed into Neurapathy, one of the most painful and serious pain conditions out there. I went from owning my own game studio, to being completely broke and unable to even go outside because my eye hurt so much. After visiting all the top specialists in the country who specialize in CXL, not ONE of them even mentioned Cornea Neuralgia, I had to discover it myself via an article written by a Harvard Corneal Specialist and through him was able to get diagnosed. It also turns out that CXL gave me a tumor in the back of my retina! Of course they doctors did not report ANY of this to the FDA and did there best to sweep it under the rug.

The UVA light is NOT SAFE guys, having these procedures done are NOT SAFE. I cant stress it enough. Research yourself and no matter how nice your doctors appears (mine was the nicest most compassionate guy ive ever met... or so i thought) they are here to make money and cut as many corners as they realistically can to get you in and out. The elective eye procedure industry is a billion dollar industry, I promise these doctors will turn on you in an instant once they screw your eyes up due to bad protocol or `complications' and they will protect each other at your expense.

With all that said... DONT HAVE CROSSLINKING OR TPRK!!!! Its a huge scam and in a few years when they come out with a real treatment for Keratoconus (research Dr. Trevor Sherwin) it will require no cutting on your eye, no severing of nerves, no dangerous UVA light, no unethical protocols for the sake of efficiency and so on.

If you are reckless enough to have this done after reading this, ATLEAST obtain blood serum/plasma drops and insist they are used in place of artificial tears. If your doctor says its not needed, ask him how its supposed to heal properly without blood supply? Ask him how the nerves will heal after being damaged from the UVA light and whatever else is done? If you come prepared with information it will catch him off guard and expose his incompetence or willingness to cut corners at your expense.

Proceed at your own risk. You have been warned. My advise would be to get Scleral Lens and suck it up untill 2020 when new much safer and effective procedures replace these arcane CXL and TPRK, LASIK etc SCAMS.

Best of luck. If you have any questions contact me at scottpetty82@gmail.com as I do not check these forums often.

-- Edited by ScottP on Monday 1st of May 2017 11:06:50 PM



-- Edited by ScottP on Monday 1st of May 2017 11:09:35 PM



-- Edited by ScottP on Monday 1st of May 2017 11:16:11 PM

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Deb


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Date: Tue May 2 2:51 PM, 2017
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Sorry to hear about your experience. Certainly everything has its risks and your right, epi off is still the standard method and proven in studies to be the only treatment that works to treat progression (when progression has been documented).



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Date: Tue May 2 9:29 PM, 2017
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Deb, can you expand on the "when progression has been documented" statement? I am considering cross-linking as a potential solution to restore or at least stop the progression. I agree with ScottP about taking control of your own ship and not letting the Dr's determine (withhout your consideration) the treatment options. But my hybrid lenses no longer fit without rubbing the cornea and after a few weeks cause enough trouble to require a break. I have had cornea topographies for 20 years,but when I asked for my file, they only had two. With this rather slow progression, do you think cross linking will have any effect to restore, even slightly, the shape so that normal hybrid lenses will fit?

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Date: Tue May 2 10:01 PM, 2017
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Why mess with hybrid lens when there are 'Europa' 2nd generation juniper mini sclerals out now as the industry standard. They are 16mm and vault over the entire cornea and easy to fit. It's what everyone is using now, should be easy to find. I would consider looking into those before jumping into CXL. Due to there size they are very comfortable, I wear them myself.

Keep in mind that in a few years CXL will be ghosting out as Dr. Sherwins treatment becomes more widely available. His research team has developed a drop that is a growth factor with a small dose steroid that stimulates embryo stage collagen 1 fibers which as of now is impossible. This will thicken the cornea and strengthen the collagen. Along with this is a OrthoK mold that reshapes your eye to a normal shape. When used together it should provide both correction and stabilization. There is a video of it on this site in one of the sub sections. Eventually this should start to replace Lasik and PRK type surgery as well and hopefully prevent millions of people from having there eyes destroyed by invasive surgery.

You are playing with fire when it comes to messing with your eyes.

 



-- Edited by ScottP on Tuesday 2nd of May 2017 10:12:50 PM



-- Edited by ScottP on Tuesday 2nd of May 2017 11:26:58 PM

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Date: Wed May 3 4:37 PM, 2017
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Hi Folks,

I had Epi-Off CXL performed on my right eye about a year ago, and the surgery has stabilized the keratoconus progression (don't have it in my left eye...yet), but I've been left with some ongoing haze. I'm not happy with the haze, and my doctor is taking a wait-and-see approach, but I'm not sure I trust or believe him.

I was wondering a couple of things:

1) Would it be too late to use the blood serum/plasma drops in my eyes to stimulate healing and get rid of this haze? If so, does anyone have a recommendation for a doctor/clinic where I can get a consultation?

2) Talk about the tumor really freaked me out. I asked my doctor about the risks with the UV light before the surgery and he said it's like sitting out in the sun for a few days. It could potentially lead to cancer down the line at some point, but the overall increase in risk is relatively minor and statistically insignificant. After reading about ScottP's experiences and looking around on the net, I'm not so sure my doctor's comments are true. I can't do anything about it now, but has anyone heard of increased risked of eye surface tumors attributable to CXL?

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Date: Thu May 4 6:33 PM, 2017
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Hi gregjohnsondsm,

To directly answer your question of "do you think cross linking will have any effect to restore, even slightly, the shape so that normal hybrid lenses will fit?" My non-medical answer would be that I think it is highly unlikely that CXL will change things with regard to the fitting of contact lenses. I don't know what a "normal" hybrid lens is, but if you can't be fit correctly with a hybrid lens now, CXL is unlikely to change that.

I believe what Deb was getting at with the "when progression has been documented" statement is that CXL is about hardening the cornea to slow or stop the progression of KC. It does not, by itself, resolve any issues you are experiencing due to KC. As ScottP so forcefully stated, CXL can add new issues of its own.

There does come a time for most KC patients when KC will stop progressing on its own. Sometime after you turn 40, most people will experience hardening of the corneas just due to natural aging processes. This leads to presbyopia and the need for reading glasses. It also tends to stop the progression of KC. KC can also stop progressing in younger patients, although it can also resume progressing. I don't think anyone understands the mechanisms that control KC progression other than age related hardening.

Before one decides to expose yourself to the risks of CXL, it would be prudent that there be documented progression of the KC to justify the use of CXL. If you have been getting corneal topographies for 20 years, you might very well be approaching the age where your KC is going to be stable. While it is unfortunate that more of your records aren't available, hopefully the two most recent topographies are available. I am not a doctor but, as a patient, I would want to look at 2 years ago, 1 year ago, and right now to see if there have been any changes.

Hopefully your eye care practitioner has enough experience with doing cornea topography for KC that they realize that they have to make some adjustments to the equipment to get good readings of the steep curves of the KC cornea. The standard topography for normal eyes is geared toward routine contact lens fitting and the part of the map you are interested in will probably be squished into one or two color bands on a standard map.

Here are guidelines for the Tomey TMS-4 topagrapher:

Topography maps are generally presented in Axial/Sagital or Tangential format. Of these, the Axial/Sagital map is most useful for designing contact lenses.

Topography units generally default to an “Absolute” scale which provides the same color scale for each eye. The detail of the corneal shape and size can be lost with this setting, particularly when the corneal measurements are steeper or flatter than the dioptric scale provides. Therefore, it is recommend to adjust the setting to “Normalized” which will provide a separate dioptric scale for each eye making it more accurate for designing contact lenses.

As for the fit of your lenses, that they no longer fit does suggest that there are some changes still occurring with your corneal shape. But very small changes can throw off the fit of a contact lens. And sometimes you just become contact lens intolerant for reasons that aren't apparent to anyone. I don't think the contact lens issues alone are enough to say you are a candidate for CXL. Even if you are, CXL is not likely to take you back to where you were comfortable in your current contact lenses. I think you need to be refit for contact lenses. If you decide to do CXL, then the contact lens fitting probably should wait until after CXL and your eyes have healed.

KC patients have many options for contact lenses these days. I don't share ScottP's view that there is an "industry standard" for a KC lens. Quite the reverse actually. But I do agree that just because you are in a hybrid lens now, does not mean that is the only option your lens fitter should be considering.

I also agree with taking control of your own ship. Maybe not quite stepping up as the captain, but certainly being well enough informed that you can ask pointed questions about how likely it is that anything being proposed will address your issues and whether there are other options that should be considered. Even the best doctor in the world doesn't care as much about your vision as you do. Nor do they understand what you are experiencing as well as you do.

Good luck! And let us know how things go for you.

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Date: Fri May 5 3:21 AM, 2017
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SteveF

1) it's never to late to 'try' the serum/plasma tears but typically at one year your haze has pretty much stabilized. CXL haze is different than PRK haze in that it's deeper in the stroma. With that said it wouldn't hurt to try although I'd highly suggest you aim for PRP over serum as it has most potential for regenerative properties. Baylor College of Medicine in Houston TX offers an advanced PRP kit its $450 for a three month supply. You could try it but just make sure you get a test done via the light scatter machine (if your doctor has one) to gauge any changes. Some doctors dont even know these machines even exsist. There is a good chance your doctor has never heard of PRP (platelet rich plasma) drops are or the benefits they have on the eye. I dont say that to be negative, its just amazing how after all the top CXL surgeons and cornea specialists in the country ive been too, they cant decipher the difference between PRP and serum drops and say its the same thing. Don't believe that junk, you will likely need to present your doctor with articles to get him to even write a prescrption to get this unless you visit Dr. Pflugfelder at Baylor to custom write your script.

2) As far as I know there have been zero studies done on tumors or Nevus growth related to CXL. That goes for nerve changes as well since that would require a confocal microscopy before and after. Some doctors even argue the thickness of your cornea should affect how much light goes through, but the majority of doctors treat this as what it is, an experimental procedure done to prevent a corneal transplant and promoter 'Lasik Xtra', there knowledge consists of 'broscience' especially here in the states and really have no clue the long term impact this procedure (or any others) has on eye health. I visited a Cornea Specialist early on when I was trying to figure out why my eye hurt so much. She said she had no clue even though I had the symptoms word for word of Cornea Neuralgia. A year later when i discovered myself through extensive research and got diagnosed I called to let her know and ask why she could not diagnose me being a `cornea specialist`. She said she assumed it was impossible because she went to a CXL conference and this was not listed as one of the possible side effects. That is what I mean by `broscience`. These doctors have no clue and just count on the incompetency of others to guide there decision making instead of doing it themselves. Even if she had said well I highly doubt it, but the symptoms sound that of `Corneal Neuralgia` she would of saved me a year of pure pain and I could of got treatment earlier. To them you just put some drops in the eye, turn the machine in, and hope for the best. 

It doesn't help the guy leading the charge on the now industry standard FDA approved 'Avedro' machines was involved in the early FDA scandal that gave thousands cornea ectasia by cutting corners and bending information to get this approved to begin with for Lasik. Dozens went to protest him when the FDA was having final meeting to approved in 2015 when he was trying to approve CXL and say what a crook he is. The doctor who fried my eye and put a front desk receptionist in charge of my procedure was there to say how successful his trials have been of this procedure and never once mentioned "except for this one guy who got cornea neuralgia and a tumor!". Let that sink in when you consider if this treatment is really for your benefit as much as it is for doctors to make extra cash.

 



-- Edited by ScottP on Friday 5th of May 2017 04:04:56 AM



-- Edited by ScottP on Friday 5th of May 2017 04:17:29 AM



-- Edited by ScottP on Friday 5th of May 2017 04:24:17 AM

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Date: Fri May 5 3:32 AM, 2017
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JimKC- You are right to correct my statement about the industry standard. What I meant by that was it is becoming the most commonly used form of Scleral lens, not so much that it is the best. As far as I know Laserfitlens is more on the side of `industry standard` and because I was unable to fit Europa on my right eye due to having a lensticular astigmatism I will hopefully be seeing him soon.

For people with standard KC, at least here in the states, Europa is what most doctors are offering due to the superior comfort from smaller size and how easier it is for doctors to fit vs old sclerals due to a new fitting method by establishing what shape your eye is. In no way does that mean they are the best option. So yes you are right thank you for correction. I still stand by my assessment that jumping into CXL without looking into other lens is a very reckless thing to be doing.



-- Edited by ScottP on Friday 5th of May 2017 04:10:00 AM



-- Edited by ScottP on Friday 5th of May 2017 04:15:47 AM

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