The Hiatus Isn’t Over, and Surgery

Hey there! I’ve been missing for a while and didn’t even get the chance to write out the actual entries for Blog Everyday, so a lot of them got posted blank. OOPSY. I’ll be reverting them back to drafts after I post this and get it off my chest

As you all know, I have Keratoconus. I’ve lamented about this many times before on my blog. Well, my eye doctors over at North Shore LIJ brought it to our attention that they were conducting a limited FDA-Approved Study on cross-linking, one of the procedures offered to keratoconus patients as a means of stabilizing the cornea and preventing the disease from getting any worse. (Hopefully). It’s already been going on in Europe & Canada for many years, but isn’t FDA approved in the US yet until the studies are done conducting their research and submitting stuff and getting the procedure approved.

I was diagnosed young, and the disease usually stabilizes itself around the age of 40. Though it is still mild in my eye, my younger diagnosis means it will have too much time to get worse and I’d definitely benefit from cross-linking.

It’s not FDA approved so I’m warning you, I’ll be paying $3000 per eye out of pocket, no insurance covers it yet. Insurance will cover all the drops and medicines I need to take afterwards however, so yay. 

Between all my trips to the eye doctor AND the two back to back vacations I went on, I haven’t posted here in a while. My cross linking procedure is going to take place this Friday at 1:30PM, with follow-up appointments scheduled for Saturday and Monday. I’ll blog about the journey, as always.

If you want to know more about what cross-linking is, read up the Wikipedia article here first and then conduct your own research haha. I’ve certainly done an extensive amount of it over the past week.

Gonna see how long it takes for you to read this and yell at me over the phone for not telling you sooner Nubsy! Though truth be told, I went in just yesterday for the consultation after staying out of my contacts for a month, and the consult turned into an evaluation, and it was determined my right eye was eligible, and my left might be but they have to re-screen in another month. After the evaluation is over, you typically have to get the procedure within 45 days. Doctor was like…either this Friday or wait till July b/c she’s unavailable or booked or just plain busy. I didn’t want to wait until July because it’ll impede into my summer fun and if I get it done now, I’ll be all healed up by then.

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15 thoughts on “The Hiatus Isn’t Over, and Surgery

  1. Hi,

    I hope your surgery went well and the pain wasn’t that bad. I had bilateral CXL last Sept. in LA (way more expensive in crazy LA and I’m on disability and had to travel there!) Bilateral was fun as my vision was 20/400 post-op for almost 2 weeks, as well! I have (had?) a strange, late-onset, rapidly-advancing type of KC that showed up in my late 30s due to a connective tissue disease I have (did you notice those 3 diseases in your research?). I literally could see nearly 20/20 less than 2 years ago. Odd, huh? My blog is about my CXL journey (and complications–sorry!) and EDS, the connective tissue disease and the mess that has caused in my life since my 20s.

    If you have any CXL questions–just hit me up as my EDS caused so many complications that I’m a CXL pro now. Hope you get some VA back! I did but am contact lens intolerant and rather screwed at the moment. Take care and avoid staring at anything bright (like your computer screen–owww)!
    A 🙂

    • I’m healing up just fine – the CXL took place only in my right eye (I’m assuming bilateral CXL means both eyes at once?) and the epithelial layer they removed has healed over already…my vision is still cloudy and blurry compared to normal and my ophthalmologist told me it’ll be another 2-3 weeks before that clears up. FINGERS CROSSED but it seems like I haven’t had any complications yet. My KC is different from yours in a lot of ways though – I’ve had it since I was 16 or 17..maybe earlier because it wasn’t diagnosed right away…but it remained mild. To hear that you saw 20/20 before this is so shocking and I feel terrible for you 😦 At least I’ve had years and years to cope with poor vision. And my parents are here to help support me post-op (and help me pay the bill. Did you know in India it only costs $1500 per eye? So sad, I paid double that and you paid more than I did)

      I’ve never heard of EDS but am certainly looking it up now. Is that what caused the complications when you got your cross-linking? I’m going to your blog right after typing out this comment to read up some more.

      • Glad everything is healing well! My epithelium took almost 2 wks to heal due to my primary disease (Ehlers-Danlos syndrome–EDS) and yes, that’s what caused it and all the issues I presume. Bilateral is both eyes at once as I couldn’t travel twice and I was losing a line on the eye chart every 6 weeks! So freaky.

        You are very smart to get CXL now. KC is more advanced in those who get it young (saw that in a study) and I’ve met 2 people who must be about your age on here who got transplants. Aren’t you glad CXL is available?! I could never do a transplant w/my type of EDS and would have a white cane by now. Oh, that was bad. Yes, I know all about how cheap this is in India and how insurance covers it in the EU, etc. Grrrr. I had a blogging friend in India w/KC–so rampant in S. Asians.

        Well, we can subsist on large bags of cheap basmati for a few years. Lol! Thanks for the follow, btw. I bookmark new friends or I get vision overload, but am good at checking-in.

        Take care and I still have no idea how you can look at the screen! I took me 3 mos!
        A 🙂

      • I dont know but I guess that your complications were all due to EDC 😦 I had the CXL Friday (Which I am so grateful for, I don’t even want to contemplate a transplant) and by yesterday everything was all healed. I’m still taking Pret Forte to prevent scarring but am hopeful that things just went really well for me ><

        You're welcome for the follow! I think your posts are very provocative, heartfelt, and speak of things I can definitely relate to.

        I didn't know KC was so rampant in South Asians….I'm the 2nd person in my entire extended family (I'm Indian, that's a lot of people) to ever be diagnosed with it. The first had it detected very very early, got a bilateral CXL, and has proper vision with just eyeglasses. Lucky bastard, I'll never see properly again without my hard contacts 😦

      • Thanks for the compliment! I do a lot of medical research since I’ve been so sick since my 20s and had a misdiagnosis, so I did the same when I FINALLY got the KC diagnosis. Thus far, there is a higher percentage of KC in Finland, S. Asia (figured you were Indian from your name, and Israel. Other countries are publishing their own research now–just Google if interested (I love genetics!). They believe with the latter 2, there’s an issue with some word I forgot that means people of close relation marrying. So, in Israel (I’m Jewish, but this is from EDS, not a gene), it shows up in both Jews and Muslims as we used to do that, too (cousins marrying cousins–eewww!) and in S. Asia, it shows up more in among the Muslims, but I’ve met Hindus with KC. Who knows? They are beginning to identify genes that some people have that causes KC and you may have them in your family. I’m a genetic mess from all the inter-marrying back in the old country. Lol! Fact of the day! If intereted, scroll down to OTHER EVIDENCE regarding the prevelence in S. Asians: http://keratoconuscanada.org/research/edwards%20et%20al.,%202001.pdf

        Take care (sorry your relative can see fine—that could have been me with a correct diagnosis!). Not fair for either of us!
        A

      • I really will stop blowing up your post, but I think I gave you a bad link earlier (it posted and wasn’t all pink). Try this and go to Ethnic Differences–rather interesting. This happens to be the article I was referring to. Oh, that word I forgot is consanguinity–I knew it was something like that as it comes from Latin (sanguin = blood) and I speak Spanish (or did) and un peu of French. Hope this works!!!
        http://www.jaypeejournals.com/eJournals/ShowText.aspx?ID=2666&Type=FREE&TYP=TOP&IN=_eJournals/images/JPLOGO.gif&IID=211&isPDF=YES

    • Ahh sorry I didn’t hit on all the points in your comment. I was wearing RGP lenses for about 2 years prior to getting my CXL…I switched back to glasses (But they’re a poor excuse at correcting my vision and don’t help me see properly at all, though I guess I can function reasonably enough) about two months prior to CXL and am staying out of lenses until they do the cross linking on my other eye 3 months from now. Once I’m all healed up and the doctor says it’s safe, I’ll go back to lenses.

      I am lucky in that I responded REALLY well to contact lenses. I mean they were uncomfortable as hell when I first started wearing them but I sucked it up and powered through until I could wear them for longer periods of time without crying. Also, the necessity of needing to see during classes and not having an up-to-date eyeglasses prescription was motivation enough haha.

      Have you tried wearing the hybrid lenses that are soft around the edge? They might be more comfortable if you can’t tolerate the hard lenses. Unless the EDS you have is the reason you can’t wear them? Either way, this certainly sucks and is rather depressing if it isn’t for the constant support of friends and family

      • Hey P (my new name for you),

        Got it! I wore toric soft contacts a few times a week and for just a few hrs/day pre-CXL, I had to get them as my dumb doc here was going to have a CXL trial and thought 1 eye couldn’t wait (he couldn’t do the bilateral thing) so I was going to get Intacs in 1 eye and needed to fail contacts for the prior-auth. Luckily, his trial got put on hold as surgery (like incisions) would have ruined my eyes with the EDS. I actually figured out I really had EDS from getting KC–the silver lining in it all. It took a few mos as I had to see a geneticist. Anyway, the torics worked in 1 eye (20/25), but would just fade in a couple hours and killed my dry eyes. Oh, CXL will stabilize your eyes so your vision won’t fade as the day goes on! Yippee…

        I can’t wear contacts as I have severe dry eye due to a lid disorder called meibomitis (affects the lipid layer in the tears) and dry eye syndrome, which is connected to the EDS I believe. It’s also very common in the desert due to the arid climate, so a lot of people have a bit of dry eye. I get these new treatments for the meibomitis and am on Restasis now (those stupid commercials for dry eye), but not much help. I left a note in my reply on my blog about the only possible lens that will work–they’re filled with saline and vault over the cornea (and are nearly the size of your eyeball!). I will know if I’m a candidate and if insurance will cover next week.

        Is your family supportive of the KC ordeal? Mine could care less about the KC or the EDS so I just deal with it on my own and have a few good friends on here and elsewhere (mainly EDS people). Well, c’est la vie, but would be nice to have support and RIDES! You need a car in these parts and it’s so hard to drive mine now!

        Sorry you’re stuck with glasses. Ugh! They do nothing for me so I can imagine–especially as you’re in school still. My surgeon let me wear the torics the night before surgery so I could (sort of) see my brother at dinner and my plan was to get hybrids after CXL and just wear a few hrs a day if possible, but any contact that sticks to my eye is out. Even pre-op those torics were glued on and it’s actually dangerous as you can pull parts of your epithelium off. You should get the hybrids if your insurance covers them–way better than RGPs from all I’ve read. There’s also a new soft contact designed for KC–think it’s called KeraSoft. OK, I’ve written posts for comments tonight! I get so excited to meet a post-CXL KCer!
        Talk soon!
        A 🙂

  2. I tried calling just now! I just knew something was up but didn’t get a chance to talk to you over your vacations. Totally understand about the unavailability of the doc, but *sigh*!! If it wasn’t such short notice I’d definitely have at least tried to get a flight down there or something!! What are the details of after surgery though? Like are your eyes going to be bandaged up for a while or? Let me know!!

    Call me when you can so we can properly catch up though 🙂 After the surgery will be fine too, just you know, whenever you’re ready!!! Good luck with the surgery, it sounds daunting but you will be okay and it’ll be fine. It makes total sense to do it earlier and get it out of the way so things are easier later on/can has more fun. Seriously though good luck, and had no idea it only stabilized at 40, so I think it is good that you are doing this now. MUCH LOVEE!!

    • You did try calling!! I saw it too late to call you back (aka just now) but I’ll give you a call tomorrow! Got lots of catching up to do with you and I’m anticipating that over the next few days/week as I’m healing, it’ll be a LOT easier to call you than read messages here or elsewhere online. Or even text. I’m not sure how bad it’s going to hurt T_T

      As for the whole procedure, maybe I’ll post about it afterwards. No eye patch or anything like that, but they put a ‘bandage contact lens’ over the eye after the procedure is done because they’ve removed the epithelial layer of skin covering your cornea. Which not only hurts like a bitch after you’re no longer numb, but definitely requires you keep it covered or risk infection. The contact they put in has no power and can’t be removed (day & night) until my appointment on Monday. After that, the epithelial layer continues healing and hopefully within a month, i’ve got full recovery.

      • Okay! I’m prob going to be out most of tomorrow but I might be free in the evening..it’s my sister’s bday so we’ll be celebrating! Hopefully I’ll be able to talk to you for a bit though and I’ll def try to get on Skype tomorrow night so I can at least wish you good luck for the surgery. (and will also try calling one more time and will at least leave vm if I can’t reach!!) I really hope it doesn’t hurt much or at all..hopefully the medicine they give you will at least take care of the pain >__<

  3. Good luck with your surgery! I am probably having one in the coming weeks myself. Glad to see you aren’t lost or dead either! haha. Hope you enjoyed you vacations! Mine start next week!

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