I don’t want to write this post. I had a preliminary, uneventful post floating around in my head regarding my 6-month, post-CXL checkup, but then the crap hit the fan, which I think happens in Airplane, as well. Oh, I so wish that movie could have been on any of the boring channels of Dish I get at the motel last night.
Once again, I am left wondering how this happened when I’ve been at my ophthalmology clinic at least every month since my surgery. As I was in a clinical trial for cross-linking (CXL) for keratoconus (KC), I have had post-op checkups at 1 week, 3 months, and then 6 months, which was yesterday. These are all done with my local corneal specialist.
However, due to the IPL treatments I’ve had every month or so for meibomitis, I have been seen more often by a different associate at the clinic. Since I pay cash for the IPLs and they bill insurance for the office visit, could he not do a 1 minute exam of my corneas to make sure all is well due to my status as a post-op patient? I also mentioned to both doctors I see there that I was diagnosed with Ehlers-Danlos syndrome (EDS) this winter, which due to poor wound healing, should have led to more frequent post-op checkups due to the complications I already had.
I went in yesterday afternoon expecting to wait hours for my usual 5 minute appointment, get no answers as to why my eyes are still so dry and the sun is still burning my retinas, read a big, lighted board with lots of letters for the FDA, and call it a day. Things started out fairly well. With great struggle, my visual acuity (VA) is largely the same. From right to left, I came in at 20/40 and 20/50. The 20/50 eye was 20/40 last month, but it fluctuates and this technician isn’t my favorite. I wan’t worried and that was my better eye pre-op. The fact that my bad eye is still holding at 20/40 when it was 20/100 pre-CXL is atypical and great news.
My doctor checked my eyes for dryness first. He said that my eyes were a 5 on the dryness scale due to the IPLs and possibly the Restasis and were around a 12 before—is that the 1-10 scale and was 12 added for emphasis? He noted dry spots on my left cornea, which was my better eye dry-wise and keratoconus-wise. Well, that’s strange. I was just wondering how I’m a 5 with no tears and mentioned I had ointment and liquid gel drops in my eyes, but he said he can see beyond that. That didn’t answer my question really, but I figured that this too shall pass.
Then his assistant put the yellow drops in my eyes and maybe another drop and then he did an in-depth corneal exam. It seemed all was well, until he stopped and told me I had central corneal opacity and a scar forming in my right cornea, or something along those lines, as I tend to experience hearing loss at times like this. At least he was talking and giving me more than 5 minutes this visit, so I asked what that meant as it didn’t sound good. He told me there was cloudiness in my cornea and something about a scar and that I needed to see my Top Doc CXL surgeon in L.A. He said, “When can you go… 2 weeks, 4 weeks?” Oh, this wasn’t good at all. Here is why:
Corneal opacity is a disorder of the cornea, the transparent structure on the front of the eyeball, which can cause serious vision problems. Corneal opacity occurs when the cornea becomes scarred. This stops light from passing through the cornea to the retina and may cause the cornea to appear white or clouded over.
There are many causes of corneal opacity. In some cases, your doctor can recommend a treatment that will reverse the opacity and lessen your chance of needing additional treatment, such as surgery.
I just kept staring at him and the gears in my head were going wild. CXL is very safe, I saw the best surgeon, and my right eye, which was the bad eye, was not in the advanced stage or super-severe stage of keratoconus. If it were, I would have been disqualified from the clinical trial and my surgeon would never have taken the risk and done a corneal transplant instead. Nothing was making sense. Would I get a blind, milky-white eye like that 200-year-old jihadist that died awhile back? I thought keratoconus was bad enough?
I told him there was no way I could get back to L.A. again. I asked if he could send a letter and maybe my surgeon could explain what was going on from that and a record of my exam, but my doctor said he really needed to see my eye, but would send a letter, regardless. Forget the rides, the hotel, and paying cash to see the out-of-network surgeon who I had to sell a kidney for to get the bilateral CXL—now I’m having some possibly serious complication from my EDS as I have a heart murmur that has always been asymptomatic. I can’t see a cardiologist until the end of March and am hardly able to walk around the grocery store due to shortness of breath and horrid fatigue, which seems to be caused from the heart palpitations and regurgitation. This was enough worry for one month and now this?
I came back from the appointment in a state of shock and sent a 1,000 word count e-mail to my CXL surgeon, who luckily gave me his e-mail address months ago—fairly sure he’s regretting that one. I stayed up all night scouring scholarly articles in medical journals to try to understand this. I found a few things worth noting. Eyes with very thin and very steep corneas are more at risk of central corneal opacity and scarring. In one study, 8.6% of eyes developed significant scarring withing 1 year post-CXL as a result of this.
My right eye wasn’t as advanced as these eyes steepness-wise per my topography and my surgeon’s remarks and although I have no record of my corneal thickness, it still made little sense. Could the EDS be behind it? I have type II and have tissue fragility, poor wound healing, and terrible scarring from incisions, although I didn’t have any incisions with CXL. Why did this happen then?
I found 1 study indicating that patients who developed central corneal opacity and scarring had complete resolution within 1 year, but now the article is hiding in Google somewhere. I don’t recall the problem was connected to thin or steep corneas, either. I have to dig pretty deep to find these and forgot to leave bread crumbs for that article, which would be called bookmarking it. Great. That was my big ray of hope and don’t ask me how a scar resolves.
Regardless, some of these studies were older and with any new technology, one makes improvements. There is now a protocol using a hypotonic riboflavin solution along with the standard riboflavin solution to plump up the cornea during CXL to prevent opacity and scarring. It is also necessary to check for the flare to ensure the cornea is fully saturated with riboflavin and then to measure corneal thickness following that to avoid problems due to an overly thin cornea during the surgery.
Did my surgeon not do all that? I wrote about the flare in a past post, but I couldn’t remember anything about measurements and who knows what was going into my eyes? Why was I doubting one of the best keratoconus specialists in the world? Well, read my former post if you’d like to know why I don’t trust anyone with M.D. after their name.
Luckily, I found an article he wrote discussing the importance of all the above. Phew! Good doctor! I also read about a patient he had with the same problem, but shortly after CXL and they had vision issues from it. I presume I don’t since my VA hasn’t changed in that eye, not that I can see well due to the KC. He resolved it with long-term steroids and antibiotics. Hmmm…
Now, steroids (drops, pills, or whatever) make me very sick and I’m still losing my hair from those following CXL, but according to the article, this is only 2 drops a day and in 1 eye versus 4 drops a day in 2 eyes post-op, thus 2 drops instead of 8 drops a day. Could I pull it off? I have a full bottle of the exact steroid he used on this patient, as my local doctor prescribed it for the dryness and I stopped it withing 24 hours due to side effects, but I was on the 8 drops a day protocol. I even have a good antibiotic left over from my CXL. How is an antibiotic going to get contaminated—it’s fine. Why not?
So, as I am not one to sit around, like to be my own doctor and am damn good at it, would never be able to get a corneal transplant due to the EDS and cross-linked eye (yes, this appears to be causing rejection), and had a published treatment protocol to follow thanks to my surgeon, a medical journal, and Google—I whipped out my ocular steroid and ocular antibiotic last night and considered it treatment day #1. As a disclaimer, please do not follow any of my advise on playing doctor.
Oh Lord, tell me I don’t have to go to L.A. and that this protocol will work and not make me sick. I really picked the wrong week to stop sniffing glue, quit amphetamines, quit smoking, quit drinking…
Where’s a damn Blockbuster when you need one? It’s not like I can order Airplane from a motel room.