JMR's C3R / Intac Journey

[jayuk]

Hi all

I had invited JMR to come to this site and to post about her experience(s) with KC and her choice to avoid the transplant route and opt for C3R / Intac.

When I spoke with her early last year; I was very impressed with her results on the treatment and this provided me further confidence in the treatment of both Intac/C3R with experienced Opthamologists.

Here is her response from this morning..

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Jay, it wouldn't let me register, for some reason. If it's okay with you, I'll just send you the post below and you can put it up, okay?



Hello, I'm the infamous Intacs and C3-R success story. I've never been accused of being a "saint" - so surely you must be talking about someone else!

Jay asked me to post my story, so this will be long. Here's the short version:

I'm seeing better than perfect. I am 20/15 and 20/20 with GP's. I am back to driving at night and reading without reading glasses. I am seeing better now than I have in a dozen years.

Prior to Intacs and C3-R in Mexico, my "good eye" was an uncorrected >20/2400, my "bad eye" was fingers at a foot. Neither eye could be spectacle corrected. I had been a cornea transplant candidate for at least three years. My K reading on my bad eye was a 74. If you don't know what that means, anything over a 45 is KC and anything over a 60 is really, really bad and transplant territory.

I know everyone thinks they have the worst case, but I am told by most specialists that they have rarely seen anyone with a K reading over 70 that didn't have hydrops. I am either the worst, or second worst case they have ever seen that didn't have a transplant.

It was so bad, you could SEE the cone and the distortion on my eyelids when you looked at me. People who didn't know about KC asked me what was wrong with my eye.

Here's the long version and the whole story, if you're interested:

In November, 2000, I traveled to see a new eye doctor for to refill my prescription for a pair of contact lenses. I remember the baffled technician complaining because she couldn't get a reading on my left eye and the machine kept giving error messages. The doc asked me if anyone had told me I had Keratoconus.

That was the first time I had heard of the eye disease. That day was also the first time I heard I needed a cornea transplant. I wasn't given any other options, just that I needed to cut out my old cornea and put in a donor one. It was all so cavalier, like, "You idiot, didn't you know you had this" as if one hears this type of news every day.

This new doctor made it sound like the operation to transplant a donor cornea was so simple, a mere hour outpatient and my problem would be solved. He seemed annoyed that I didn't take his advice and schedule a transplant for the following week.

I was stunned and in complete denial. Then I got angry. I started reading and researching.

In the past, no one had mentioned I had any type of problem beyond very poor vision. I had been wearing extended-wear, rigid gas permeable (RGP or GP) contact lenses and the old fashioned hard lenses before that. I hadn't been in glasses for over 20 years. After I heard that I had a cornea problem, I called my contact lens fitters going back some 15 years and longer. They reviewed my chart and there was never a mention of KC in my history. I do remember one doctor commenting that at the rate of the deterioration of my vision, by the time I was in my mid 40's, it would become a problem.

I suspected I had some sort of minor problem about ten years earlier when my vision became significantly worse in my left eye when not wearing contact lenses. My contact lens fitter (CLF) then informed me that my prescription had not changed and assured me that although my uncorrected vision was extremely poor, I was doing very well in contact lenses. That was because my cornea was so mushy, it was molding to the shape of the contact lens.

I could see 20/20 with them, I had never had any problems and he saw no reason for concern. At that time, I was wearing the extended wear gas permeable lenses that you slept in and I was wearing them for a month at a time.

After my diagnosis, I went to a series of doctors. They all felt I had something wrong with my cornea but it certainly didn't appear to be the standard type of Keratoconus. Later, I found out what I had was Pellucid Marginal Degeneration (PMD), a particularly nasty variation of KC. The cone was low and offset, in the 8 o'clock position, with a flat band below that of thinning cornea located just above the blood supply. It appeared that I had it in both eyes with my left significantly worse than my right.

Some of the specialists seemed incredulous that I had never been diagnosed when my disease had progressed to such a point as requiring a transplant. They suggested that in the past, I just "missed it" when the doctors informed me of this, as if I was too stupid to remember such a vital piece of medical information. They didn't consider that perhaps my case was late onset and rapidly progressing. Other doctors made me feel like I was wasting their time with my questions when the course was so clear: get a cornea transplant. The answer was simple, just do it.

I felt as if I had no options.

At this time, I lived in a very small town, in an isolated portion of the United States near the Grand Canyon. I went to see our local eye doctor who gave me a wake up call.

Stan sat me down and in a very fatherly way told me that if I was his daughter, there was no way he'd let me get a cornea transplant. He did not give me specifics as to what the negative outcome might be, only that he had seen transplants that had gone bad and it wasn't something I wanted to know about. He gravely told me that when these doctors were suggesting I get a transplant that I should remember it's not their eyes they are talking about, but mine.

Stan gave me great advice. He told me to find a contact lens fitter whose opinion about transplants and treatment matched mine. He recommended I do whatever I could to avoid a transplant.

(After my surgeries, I went back and thanked Stan who was amazed at my results. He said he had never seen such a progressed case of KC in his 25 years of practice.)

After a few months, I found a CLF in a major city about 5 hours to the south of me who specialized in KC. Dr. Rinehart confirmed the diagnosis but felt I could be fitted with a contact lens. Because of my age (nearly 40), he was optimistic that the progression of the disease would likely slow and I may be able to avoid a transplant indefinitely.

For three hours, he tried countless lenses and eventually had a Rose K engineered to fit my eye. It was tedious, expensive and time consuming, but I could see again! For the time being, I had dodged getting a cornea transplant. When I left his office seeing again, it seemed like a cornea transplant was something far off in the distance, a reality that "someday" I might have to face.

I owned a business so taking time off for appointments wasn't a problem, even though the ten-hour round trip drive was often exhausting. Sometimes I went two or three times in a month, other times twice in a year. It was very expensive because my health insurance did not pay for any of it.

Other than that, KC was only a minor inconvenience. I had worn gas permeable contact lenses exclusively all my life so there was no real difference in how my vision was managed other than the knowledge that I had this disease. I had to wear dark sunglasses during the day and driving at night was difficult. My vision wasn't as crisp as I would have liked, but I could function.

Over the years, Dr. Rinehart and I talked about the future possibility of surgery and he suggested that living in such a remote area was not the ideal situation should I have a rejection episode. We had long ago agreed that he would continue to fit me for as long as my eye could support a lens and he could correct me to 20/40. My husband and I had grown tired of traveling such great distances for health care and began to seriously consider moving. The idea of a cornea transplant became more of a reality as Dr. Rinehart had a difficult time keeping a lens on my left eye. We began making plans in earnest.

In 2003, we moved to southern Arizona where the university operated a medical school and there were a number of eye surgeons practicing in the area. I continued to limp along with an ill-fitting lens in my left eye that fell out three to four times a day. I became an expert in engaging strangers in the hunt for my lost contact lens in theatres and grocery stores. My friends had grown weary of my eye problems and were encouraging me to "just go ahead and get the surgery." I didn't want to, I had a bad feeling about it, but I had to admit that it was no longer just a minor inconvenience.

In October 2004, the lens in my left eye fell out and this time broke in half (the lens, not my eye). I remember having the feeling that it was the end of my limping along with ill-fitting lenses and that I was going to have to address the issue of surgery once and for all.

I scheduled another appointment and Dr. Rinehart informed me that my eye would no longer support a contact lens. The usually jovial man became very quiet, did not seem to want to discuss the situation and merely recommended that it was time to see a cornea surgeon. I remember him frowning as he scribbled in my chart and ushered me out of his office. I thought he was angry with me. He later told me he was more scared than anything else. My cornea looked bad.

I had heard about Intacs and had asked Dr. Rinehart to locate a surgeon I could see about doing the procedure. After a few phone calls, he came up with the name of Dr. Mark Swanson in Agua Prieta, Sonora (Mexico) as one of the leading eye surgeons performing the procedure. My fitter didn't think it would hurt to look into the possibility of this as a treatment option to a graft or transplant, after all, I needed surgery anyway. Dr. Rinehart was also very much opposed to cornea transplants as they were sometimes difficult to later fit with a lens.

The Intacs procedure had only recently been approved in the US for KC patients (August 2004) and going out of the country seemed like the wisest choice. In November, 2004 I made an appointment with Dr. Swanson and another with a leading cornea surgeon in southern Arizona.

The Arizona cornea surgeon agreed that my left eye was in desperate need of a transplant and that the area directly above the blood supply had become dangerously thin (254 microns). He had discussed doing a Lamellar Keratoplasty to avoid the possibility of a graft rejection. I was resigned to having to get my transplant and he recommended I do it as soon as possible given the state of my cornea.

I felt doomed. I knew it would be at least a year before I would probably be fitted with a lens and it would be a long, slow healing process.

I traveled to Mexico, hopeful about Intacs. Dr. Swanson examined my eyes and told me I could not have the procedure in my left eye as the cornea was simply too thin. He then told me that if I wanted to avoid a graft in my "good eye", I should have Intacs done on it immediately. It was his feeling that my good eye would likely progress to the same state while I was still healing from the cornea transplant. In other words, he thought it would progress to dangerously thin within the year. I was stunned by this news, as I did not realize that it had progressed to the point of needing a graft as well.

For the first time, I heard just how bad the situation was with my eyes. Because I was still relatively young, and that I would require an extremely large transplant in my left eye, a rejection was almost guaranteed. The very thin area directly above the blood supply meant that there would only be one attempt at a graft and if it rejected, there weren't going to be any second chances. We discussed different surgery options including a Penetrating Keratoplasty and a Lamellar Keratoplasty.

Dr. Swanson recommended stopping the progression in my good eye before it needed a graft, just to avoid that same scenario. He said given the rapid rate of progression on my left eye, I should address my good eye immediately before having the transplant in the other.

Dr. Swanson told me I was not a good transplant candidate and that he was obligated to tell me the worst possible scenario: I could very well lose both my eyes if they received transplants and the transplants rejected. I needed to do something immediately.

I made an appointment to have Intacs done on my "good eye" for Thanksgiving Day, in late November.

The ten-minute procedure involved lying on a table, having my eye taped open. Anesthetic drops were used and the procedure was painless. The only uncomfortable part was staring into a bright light. A shield was taped over it and I was asked to return a few hours later.

My uncorrected vision before surgery was >20/2400 and after the surgery was 20/80. I had been contact lens dependent in that eye for about 20 years and suddenly, I could read license plates and signs. Even Dr. Swanson was pleased with the results.

I was amazed, shocked and absolutely thrilled. My fitter couldn't believe it when he wrote me a prescription for eyeglasses for the first time in over 20 years.

My vision changed daily and my US surgeon thought it best to wait until I had some type of functional vision before doing the cornea transplant on my left eye. In the right eye, my astigmatism continued to improve over the course of the next month and my prescription changed weekly for the next two months.

In the meantime, I discussed the possibility of collagen (C3-R, collagen cross linking with riboflavin) treatment with Dr. Swanson. He told me he was pioneering some new formula and thought I might benefit from the relatively new procedure. In January, I had C3-R performed at his offices on both eyes. Dr. Swanson assured me that it would not affect my ability to have a graft in my bad eye at a later date and may buy me some time while the vision was restored in my better eye.

The procedure involved putting drops on my eyes, which were held open and anesthetized and wearing goggles with UV lights. Every few minutes, the tech would put in more drops. The procedure was tedious and a bit uncomfortable, but not painful. It lasted about 30 minutes.

After the procedure, the pain was excruciating. I was like having the worst chlorine burn you can imagine. Or a million paper cuts. I was completely unprepared for this and did not have pain medication with me. This lasted about four hours and then became bearable. I was told not everyone experiences this level of pain and I admit I am a big wimp.

I later returned to Dr. Rinehart who couldn't believe the results. My good eye had a normal thickness of 500! My "bad eye" had improved significantly as well and was at 370 microns - a huge gain from 254. When I saw my US cornea surgeon, he looked at the two topos he took and said, "That's impossible. That can't be done."

Dr. Swanson determined that my left eye was now strong enough to try Intacs. I was willing since doing so wouldn't prevent me from having a cornea graft later and really, I had nothing to lose.

On February 18, about a month after the C3-R treatment, Dr. Swanson inserted Intacs in my left eye. The cone was so large it had collapsed, leaving a cleft of tissue, which was visible to the naked eye. Dr. Swanson inserted a very strong ring on top and a weak one below to pull the cone up to the middle of my eye.

This 10-minute Intacs procedure was not like the first. I felt every part of it and it was very uncomfortable, but I got through it. I had to take pain medication when I returned home. The Intacs worked and I noticed improvement in my vision.

I still had two small, thinning areas immediately above my blood supply. Dr. Swanson thought a second C3-R treatment would help. He said to me, "I want to give you a miracle, but it's going to hurt." This was an understatement, folks.

One week later, Dr. Swanson removed the epithelium of my left eye with a laser and the C3-R treatment was performed again. This time, I was given some type of sedative and slept through a portion of the procedure, but it was still painful. I was told that most people do not stay awake through any of it, and my experience was unusual.

Afterward, a soft contact lens was applied as a band-aid to help the healing process.

I had to take a lot of pain medication (probably more than was prudent) over the next two days. Mostly, I tried to take enough that I would remain asleep for several hours until it was time to apply the drops I was prescribed. I stayed in a darkened room for about four days. I had a black eye, the sclera was bloody, and the lid was swollen shut. I looked like I was on the losing end of a street fight.

The next week, I traveled to see Dr. Rinehart, who checked the healing in my left eye and picked up my RGP for my "good" eye. For the first time, I read the lines without hesitation. I was a solid 20/20 and was even able to read half of the 20/15 line. I hadn't seen that well in 15 years and it was amazing. There was no double vision, no ghosting, no blurriness. It was perfect, crisp and clear.

I cried on the way home.

Ten days after the procedure, I returned to Mexico and Dr. Swanson examined my left eye. He was thrilled with the correction of my right eye and my left eye was healing well.

My "bad eye" had thickened to the point where it looked like I no longer needed a transplant (400 microns). I still had no functional vision in the eye and could be spectacle corrected to only 20/200, but the tissue would now support a contact lens again. Dr. Swanson told me that while he had seen worse corneas, mine was probably the most progressed case of KC ever brought back to being fitted without a graft. We spent a lot of time taking photos of my cornea.

What also made me a good candidate for this experimental procedure was that I had no scarring on my corneas.

I returned to Dr. Rinehart that same week to check the fit of my new lens. The topography of my left eye and the shape was relatively normal given the circumstances. The cone was centrally located and had flattened significantly.

It took nine months for my "bad eye" to settle down enough to try an GP. There were a few failed attempts, mostly because so few people have had GP's over Intacs and there simply isn't a fitting protocol. Also, my brain hadn't been used to seeing for so many years that it pretty much ignored the information it was receiving, making for some weird visual disturbances. But after a few tries, a GP was fit which didn't fall off.

I now see 20/20 out of that eye with a lens. I see better now than I had in at least a dozen years prior. I can drive at night again, I can read a book without reading glasses.

Dr. Swanson is optimistic that my KC may never progress further and I may avoid a cornea transplant in both eyes. But no one knows for sure.

There have been some side affects. I used to be insensitive to anything in my eye; I just didn't feel much of anything. That's why I was such a good patient for contact lenses. After CR-3, my sensitivity is normal and getting used to a contact lens took ten days. After the first CR-3 treatment, my light sensitivity went away and I was able to go outdoors in the brightest sunlight without sunglasses. But when allergy season hit, I had debilitating light sensitivity every time I took any type of allergy medicine.

I'm not sure, but I believe it is a case of severe dry eyes. (Turns out that anti-inflammatory drops have helped the most and I have been using one drop per day, per eye for a year). If I work on the computer, I have to stop after a few hours and apply artificial tears. The healing process takes significantly longer with PMD and I am told it is likely I will continue to have severe light sensitivity from time to time and dry eyes for the rest of my life.

If I had to do it all over again, I would do this in a heartbeat. I have thought about the enormous risk involved, but it seemed like I really didn't have many options. I am very aware of what the likely outcome would have been for me to have a cornea transplant and that simply wasn't acceptable. I had told Dr. Swanson that even if I never saw out of my left eye again, but could keep my cornea and eye, then I would do that before getting a transplant.

I hope this information helps someone out there who is also looking for another option. Please realize, however, that my results are much better than average.

Also, if you would like to discuss this, you can email me at jmrmail@aol.com. Before and after topos (if you'd like to show your fitter) are posted online at:

http://www.rineharteyecenter.com/html/case.html

Your fitter is welcome to contact Dr. Rinehart about his experiences with Intacs and C3-R in his patients. He is working with the Intacs people to develop a fitting protocol, so he is interested in anyone who has Intacs and needs GP's following the procedure. He would like your topographies. The number is on the website or they may email him.

JMR

[Andrew MacLean]

Thanks JMR

Your post was wonderfully helpful.

As to having been unable to register, I think this may be a result of the new software. I had a big problem getting on but John the Moderator took pity on me and helped out.

with your input it would be good if you could become a member. I'm sure that Jay would always be willing to relay your posts, but there are advantages to being able just to send off your thoughts.

Send John an message. You can contact him through the "About the Group, and how to contact us" option on the site's home page.

[John Smith]

Already taken care of

[JANE]

I READ HER REPORT & TRIED TO E-MAIL HER.DID NOT WORK. DOES SHE HAVE A NEW E-MAIL ADDRESS?

I LIVE IN LOUISIANA & I WOULD LIKE TO
GET THE TEL.NUMBER, MAILING ADDRESS & E-MAIL ADDRESS OF DR. MARK SWANSON.

I NEED TO HAVE THE C3-R PROCEDURE DONE AS THE INTACS HAS NOT WORKED.

THANK YOU.

[ashley wilson]

wow that is an AMAZING story!!

just one question ...... does your cornea not have to be of a certain thickness in order to have c3r? if so then this is even more amazing with those extremely thin corneas.

[jayuk]

Ashley

I think, if memory serves me right, its 350-400 microns....then your on dodgy ground.....but in UK it may be higher......

J

[ashley wilson]

yeah jay, i was told 450 microns so just 254 seems amazing

[JMRmail]

Hi, I thought I'd pop in and give you all an update on my situation.

My topographies continue to show slight improvement. This is great news because it means my case is not deteriorating.

I had some problems with a Rose K on my "bad" left eye, it would sometimes slip off. My fitter decided to go with a Scleral lens (big thing about the size of a dime that sits on the whites of your eyes). It's a bit of a pain to put on and take off (requires a plunger), but it never falls off, you don't get stuff under it, and it's great if you have dry eyes.

My good eye has a Rose K, I have no problems with it. My prescription in that eye has not changed in the past three years. I actually wore out a lens and had to replace it without changing the prescription. Unbelievable. I'm still in the 20/20 to 20/15 range in that eye.

My wear time in my bad eye is down to about 8 hours with the scleral. I have to use anti-inflammatory drops in it before I insert the lens. I only wear it when I really need it, like driving, etc. My light sensitivity is not as bad, but I still live in sunglasses outdoors.

Other than that, my case is considered to have stopped progressing. I wish this had been available years ago, I would have had it done then.

So, I have no regrets about having either the Intacs or C3-R done.

[Andrew MacLean]

JMRmail

Thanks for that encouraging post, and welcome to the forum!

Andrew