LOOKS LIKE I PICKED THE WRONG WEEK TO STOP SNIFFING GLUE

Photo Source: http://www.rottentomatoes.com

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.

Article Source: www.http://www.med.nyu.edu/content?ChunkIID=102906

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.

A dry article discussing 

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.

Another dry article discussing this

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.

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19 thoughts on “LOOKS LIKE I PICKED THE WRONG WEEK TO STOP SNIFFING GLUE

  1. 1hundredworks says:

    There is some invisible force that doesn’t want me to comment on your articles. That day I got blocked at office, yesterday I typed a response on my phone without my lenses on and it just wouldn’t publish. Picture my sad face pressed up against the mobile screen waiting for the comment to show up!

    Airplane is one of my all time favorites! It is just too good. I have had an opacity in my right eye from quite a few years now. It did result in little vision loss but the brain adjusts anyhow.

    You know what, you should fly over to India for treatment 🙂 The doctors are much more adjusting, CXL has been happening for many many years and the cost should be much lesser. Plus you can get on a cross country flight and pretend the Airplane story!

    Akhil.

    • Ah, that’s so nice of you to keep trying! How weird… I got this but it was one of those “texty” things in my inbox so I have to reply via the teeny notification box. What’s going on with WP?

      I do know it’s around $800 USD for CXL in India–mine was close to 5 digits! When I first got diagnosed last yr., I saw that S. Asia had the highest rates of KC in the world. If I weren’t a sick mess from the EDS, I would totally go there (and organize your room)! My grandfather loved India and brought back beautiful art–some of which I have w/the rest of my life in my storage pod. He was a real adventurer and traveled the globe. Now I know why you don’t sound super British and ride a “bike” all the time!

      Isn’t Airplane the best ever??!! I know every line. That one just came to me as I try to find humor amid my misery… Lol. There are so many purely American references from that time I would think it would be hard to get. “Jim never has a 2nd cup of coffee.” That was from an old TV ad for a coffee brand back then (Sanka?)–yeah, I’m a little old. Then the jive talkers (personal favorite) and Mrs. Cleaver interprets for them. Ha! The best (speaking of flying) is that in June of ’96 I flew from LA to Phoenix, AZ on the 2nd leg of a flight from Mexico to visit an old BF. On the way back to LA, Kareem Abdul-Jabbar showed up and got on in 1st class (doesn’t he fly in a private jet?). I said to the lady next to me, “Wasn’t that Kareem Abdul-Jabbar??” I walked right past him to get to coach and almost did that line the kid does from Airplane. I swear it’s true and almost died. My other favorite movie is Fletch, if you ever saw it. Can do the whole movie. Any old Chevy Chase movie is hysterical. Ha ha. Good times.

      OK, wrote a post here… Thx for dropping by! 🙂
      A

    • Akhil,

      Forgot to ask about the opacity you have. Mine seems to be a rare, post-CXL thing. Do you know how you got it? I just don’t want to go blind in that eye. I had “acquired amblyopia” in it before (my brain shut off the signals from that eye) due to the big asymmetry pre-CXL. Then I got a little strabismus–as in my eye would sometime wander outwards. NO!!! I can’t be an ugly, freakish thing on top of this! OK… Going to watch movie clips on YT to calm down.

      Thanks for any input (hoping the surgeon contacts me ASAP)…

  2. 1hundredworks says:

    Oh that would have been precious! “Wait a minute. I know you. You’re Kareem Abdul-Jabbar. You play basketball for the Los Angeles Lakers.
    I’m sorry lady, but you must have me confused with someone else. My name is Roger Murdock. I’m just a passenger.”

    Akhil.

    • That’s it! Ha ha. I’d have to tell him how my dad says he’s bad on defense (something along those lines). Then he’d grab me, “Listen kid, I’m out there busting my buns…” You just spelled his name right. Why did I write it like that? LOL!

  3. 1hundredworks says:

    Haha! This clip is awesome.

    I got my opacity when I was in school. I was cycling in the morning, on my daily commute from home to school and suddenly felt a crushing pain in my right eye. A dust particle had lodged itself between the cornea and the lens. I couldn’t do much, just took out the lens and then went to school. On the next doctors appointment the discovery was made!

    Akhil.

    • Had to put the clip up. I just think I know “every line” apparently. You have to watch Fletch clips so we can do the lines. 🙂

      Thanks for sharing your opacity story. Mine seems to be deeper in the cornea, but I read that you can get it from surface injuries like you. That’s terrible about what happened. Ugh! Oh, my surgeon e-mailed today saying he didn’t think it was serious (?) but couldn’t do anything unless I went to LA to see him. Great!!!! Other doc is freaking out–what to do? I’m self-treating until I can straighten this out.

      Do you think you might switch to sclerals due to the dust/riding if available? It’s really dusty here as i’m in the desert. My doctor actually mentioned them Friday (like I was listening at that point) as my eyes are too dry for normal contacts still (maybe forever). They’re so much money and what if they don’t work out? How do you get those things in? I have really heavy eyelids (that is my eye that floats around WP). Seriously?! I had enough issues opening my eyes to get the little torics in! Ha ha.

  4. 1hundredworks says:

    I have thought about sclerals too, they seem quite natural to my lifestyle. Then again, RGPs have been working good, why fix what ain’t broke? Even I can’t imagine how those big pieces of plastic would be stuffed inside my eye! I think I will just continue the way things are until something dramatic happens.

    Akhil.

  5. Oh no, the “if it ain’t broke, don’t fix it” again! What about getting another dust particle (think it was a pebble) stuck between your cornea and lens again? Someone has to try this 1st and it’s cheaper in India!!! 🙂

    I have a blogger friend with them, but she’s worn them for so long I doubt she remembers the old days. Oh, she did mention she has an inflammatory eyelid condition from wearing them 12 hrs a day. OK, maybe we should both pass.

    A

  6. dyspatient says:

    “I’m a gemini, so I never know what to expect” (Kentucky Fried Movie anyone?)

    Ah jeez. You didn’t need this.

  7. I never saw that! Or did I yrs ago and don’t remember? I thought I’d seen every slapstick movie out there due to having the sense of humor of a 12-year-old boy! Again, where’s a damn Blockbuster? There was still one in my ghetto neighborhood until last year.

    I know this is the last crap I needed and I’m getting 2 answers from the docs now that my surgeon e-mailed me back (but won’t do anything unless I got to LA–the CYA thing). Can’t go due to the MVP and the rest of it, so left a message for my local doc (can he get e-mail?) that I wanted the steroids/antibiotics, although I really am doing that now, This is the standard treatment for this condition regardless of the cause (if it works) so it won’t hurt. Hoping he’ll OK it and do a checkup in 6 wks and if no improvement or it gets worse, then off to LA. Need to buy some time and feel better to organize everyone (why do I have to do everything?). Don’t you fee like you have 100 lbs on your plate and then something else gets dumped on there?

    Thanks for dropping by. Feel free to upload a funny clip from Kentucky Fried Movie. Love them all and need the laughs… 🙂

    A

  8. Dawn says:

    I’d start sniffing glue, drinking and smoking dope again if I was you …. Quitting obviously doesn’t agree with you lol

    Seriously, hope this problem resolves itself without too many costly visits to doctors etc.

    Take care and keep us updated.

    • LOL! I’d hit up one of the drug dealers in here, but all my money goes to medical bills. That was a terrible joke. Thanks for sharing the opacity story the other day, btw. Now it seems like this occurs with KC in general and also (rarely) from CXL.

      Glad I got you back on WP, Dawny!

      A 😉

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