After thinking that my left eye’s prescription was just off, it turns out that ain’t so.
This Pellucid Marginal Degeneration–and, really, you hear the word “degeneration” and your heart just sinks–thing seems to only be sort of sketched out online, and using a lot of different opthamology terms that, while I understand them on their own, are a bit hard to take in context. Additionally the opthamologist I saw, while extremely good, seemed pretty disinterested in going over treatment options and such with me. I think it might’ve been because it was the end of the day, or because my crappy vision insurance doesn’t cover him–so I’d have to get the contacts through Wal-Mart or something similar.
Until he writes a letter to my optometrist, I’m sort of in the relative dark, so I figured I’d try the Doper mine. I know that Wikipedia says it’s rare, but I figure this place is big; there might be a person or two who’s had it, or who knows someone who did.
Honestly, I’m a bit scared. I like being able to see things! It seems like right now, they’re going to try contacts, since glasses aren’t cutting it. How fast does this stuff progress? What treatments have people tried? So far, it seems that no one knows what causes it, no one knows how to stop it, and any treatment done is to sort of take care of the damage. That’s kind of scary in the I-have-no-control sort of way. I figure an inside perspective might help, assuming there is one–or, hell, maybe there’s an opthamologist who’s got more of an inclination to explain to me.
Note to the mods–I’m already seeing a specialist, obviously, so I’m not really looking for medical advice; just for information and such. And possibly for a bit of whining, since I hatehatehate contacts. Thanks!
Hi there.
Chances are, the contact lenses you’re going to need will not be the normal soft kind of contact lens, but rigid gas permeable lenses, as those are the only ones that will be able to correct irregular corneal astigmatism. So I will say (with the caveat that I’m not your doctor, and in fact I won’t be any kind of doctor until June*) to save yourself some time and worry and not go to wal-mart for the contact lenses, but go to a doctor who specializes in contact lens fittings. Your corneal specialist should be able to recommend someone if he does not perform this service himself.
Some points to please keep in mind:
Rigid gas permeable lenses are often uncomfortable upon inserting them for the first time. There’s no way to sugar coat this. You can have a drop of anesthetic put in to “ease the blow,” but eventually you will have to put them on your eyes without anesthetic.
You will get used to the sensation of rigid gas permeable lenses on your eyes. I promise you. You just have to give it some time.
It’s a far more complicated process than getting soft lenses. The fitting process might take several visits because RGB lenses are far more customizable than soft lenses, and having Pellucid’s means that your case is more complicated, automatically, than the “normal eye.” Don’t be disheartened if you must return to your eye doctor several times for a contact lens fit.
Plenty of people with Pellucid’s, particularly early Pellucid’s, are correctible to 20/20 with rigid gas permeable lenses, even if they’re not able to get that vision through eyeglasses. So there is good reason to be hopeful (although, again, I know nothing about your eyes or your case in particular.)
I’m not an expert on Pellucid’s, keratoconus, or other degenerations of the cornea by any means. From the patients I’ve seen (with keratoconus, which as you probably know is a related condition; I’ve only seen one Pellucid’s patient as it rather rare!), it’s difficult to predict the course of the condition, but for many patients, they can retain good vision for years and have no problems other than the minimal annoyance of RGP wear.
*I’m a fourth year optometry student. I’m not your doctor, so please take this whole post with the requisite grain, or chunk, of salt. I hope this helps!
Regarding the different places, my vision insurance covers almost nothing. Additionally, since I got eyeglass lenses back in December–albeit lenses that didn’t work, thus sparking this whole process that led to a diagnosis–my insurance is being jerkish. So far, it seems like they’ll cover the contacts, but only if Wal-Mart refunds them the cost of the lenses. However, since I doubt that Wal-Mart is going to find a whole lot of resale value in a +5.5 axis 40 lens, I might be stuck anyway.
I didn’t realize it was actually rare; I mean, websites say it’s rare, but websites have a lot of things. I think I’d rather have won a lottery or something.
Since you’re uncorrectable to 20/20 without contacts (at least I assume so, since you’re saying eyeglasses aren’t working for you) then there is the possibility that the contacts will be covered under medical insurance and not vision insurance.
In order to get the CLs covered, you have to be aggressive in dealing with your medical insurance company (in my experience) and get the doctor who prescribes the contacts to write a letter on your behalf; as well, your ophthalmologist should write one too. If the first person you speak to simply says “contacts aren’t covered” you may have to push a bit – make sure they understand that yours is a special case. The doctors I’ve worked with who do RGP fits for keratoconus are somewhat successful in getting medical insurance to pay them-- not always.
Remember that you are your best advocate, and just because an insurance claim is rejected the first time, doesn’t mean it will be rejected the second or the third.
Continuing on what cromulent was saying about the insurance, make sure to read your medical and vision insurance policies as carefully as if they were a contract on your soul; bookmark any paragraphs which look like they may be relevant at all. My experience with American medical insurance was that their first response to any claim was always “no”, but as soon as I called back citing policy (name and code), page, paragraph and line, and being able to counter-cite any reasons they came up with, they ponied up.
I just found out I have it to, today, after getting an exam to see if I could have Lasik. The eye doctor there didn’t seem very concerned, and made no referrals. I’ll see my regular eye doctor and hope she can refer me to a specialist. I have dry eyes and haven’t been able to wear contacts for the past six years so am alarmed that the “fix” apparently is only contacts.
I am a reference librarian and will be researching this “rare” condition and will keep you in the loop if I learn any thing. Will you pleaded do the same?
Definitely. My mom actually found this thread today–she’s been busy on the internet :)–and told me about this response, so I’m sorry I for not responding quickly.
I saw the contact specialist at the doctor’s office today, and tried to ask him how advanced it was; he said that in twenty years, he’s only seen two other cases. It looks good for contacts, though.
Maybe if you only discovered it when being scanned for Lasik, it isn’t so bad. I hope so, for you.
I’ll just add on what has already been said for those looking for more information about PMD. I was recently diagnosed with PMD about a year ago, and have relatively advanced state with astimigatism in the -3.5 to -4.0 in both eyes and only correctable to roughly 20/40 in both eyes (barely passed my driving exam). I went through rounds of RGP, superimposing RGP on top of soft lenses all without comfort. This took roughly 6 months of time and complete discomfort and poor vision and lots of money ($250 for fitting + $350 for lenses). I could never wear them for more than 3-4 hours at a time and no longer than an 1 hour without drops. I am now wearing clearkone lenses (hybrid lense) and still am having a hard time with removal but find them somewhat more comfortable and better optics. They are very expensive though ($350 every 6 months). This condition is costly and insurance refused to pay a dime. Least we can still see right? If you have blepharitis or some other drying eye condition, contact lenses will be difficult for you as they are for me, but I can still see alright with my glasses but just wish I could see like others. We all carry our crosses.
I also was just diagnosed with PMD. My astigmatism has been increasing greatly over the last few years, and I just got to a corneal specialist. Definitely a frightening diagnosis.
The main treatment option I have heard of is corneal cross-linking to stabilize the degenerating fibers in the cornea. They have been doing this everywhere except the U.S. for over a decade with apparently good results halting the progression of PMD and similar conditions. Some doctors are combining this with laser surgery to correct vision, though I have not been able to find out much about this.
I would love to hear more about your experiences, information about treatments, and wild ideas about how to deal with PMD. I could really use some support here as well!
I hadn’t looked at corneal linking–I hadn’t even heard of it. A google search is promising, though as I’m currently without health insurance, it wouldn’t even remotely be an option.
About a year on, I’ve had to stop wearing the RGP lenses; I simply couldn’t tolerate them, and my corrected vision with lenses is still within acceptable bounds. The aforementioned lack of insurance has kept me from going in, but I can tell it’s likely a bit worse than it was a year ago.
The cites I’m finding show the corneal linking as being done for other corneal diseases, but not PMD. Are you in the US?
…one of them is right by my house, and I’m definitely going to follow up with them on it tomorrow. I didn’t even think of clinical trials–but, then, other than this, I’ve been pretty unremarkable, medically speaking. Thank you so much, Ferret Herder!
Just out of curiosity, how much money do clinical trials require, I wonder…
To participate, I assume you’re asking? Most well-funded clinical trials will cover all expenses. Some will cover part - usually only the experimental/for-research-only items, leaving you to pay for anything that’s standard of care. Part of the informed consent process requires full disclosure of what, if any, expenses must be paid for by you. So it’s definitely still worthwhile to check on it.
I’ve got keratoconus and have been waiting for clinical trials for the riboflavin crosslinking to complete in the USA for what seems like forever. My vision is pretty important, and I had cataract surgerry in both eyes at a fairly early age, so I’m waiting it out. Fortunately, the cataract surgery brought my myopia into a fairly tolerable range (-2) so that I can tolerate wearing glasses without the crippling self consciousness which I used to have (I never wore glasses for 25 years after high school). I figure I’ll just be a late adopter for this particular technology although I hear they’ve been doing it in Brazil for over a decade.
Excellent! Make sure to bring at least the addresses of any doctors who might have evaluated you for eye problems within the last few years, and try to have a pretty good idea of your known medical history as well, plus a list of any meds or supplements that you’re taking. (I work in ophthalmology research at a clinic, doing this sort of evaluation, so that’s the sort of thing that I would want to see.)
I was misdiagnosed with keratoconus back in the early 2000s (time flies!). My vision was rapidly deteriorating in my right eye and my eye doctor was doing his best to keep up with the situation. I went on my own to see a corneal “specialist” who informed me that the only answer was a corneal transplant. HOLY HOCKEY STICKS! I told my eye doctor (who didn’t refer me to the crazy specialist - I went on my own) and he was mortified and felt that we could manage it just fine without ripping my corneas - albeit misshapen corneas - out of my eyes. HE WAS RIGHT! Finally, after a few years of wearing a semi-permanent lens he tried to fit me with gas permeable lenses. They wouldn’t work and so he sent me to the best place on earth…The Boston Foundation for Sight. I was fitted for a scleral lens and have had 20\20 vision in my right eye since 2007. A MIRACLE. My insurance company paid for it all (minus the co-pays) as the fine print listed keratoconus as one of only, like, two or three things they would cover. They gave me the run around for awhile but I have to tell you that Dr. Rosenthal (one of the “founding fathers” of the BFS) writes a good letter and notified the insurance company that he would be reporting them to…well, to somebody…and they would get in big trouble for not helping me see!
Okay, so here’s the deal…go to the Boston Foundation for Sight website, call them, get some info. They even have other doctors who they have trained working around the country. I’m pretty sure THEY WILL HELP YOU EVEN IF YOU CAN’T AFFORD TO PAY! YOUR VISION IS WORTH IT!!
So, I went to the doctor today who’s running the study by my house. I got a full work up. It’s definitely PMD (not that I’m surprised, given that was the diagnosis from my original doctor, but, hey, it’s nice to have a corneal specialist verify it!). My corneal thickness is within their guidelines, and I don’t have anything to contraindicate the cross-linking treatment.
So…I’m scheduled to have it the 27th! Insurance won’t cover it (well, it wouldn’t even if I had insurance), but I have help (it’s not funded by a pharmaceutical company, so I have to pay some). The office is working with my lack of insurance regarding evaluation and follow-up. They’ve been really amazing and understanding and upfront. Given that my progression thus far isn’t that bad (which is something I didn’t know, seeing as my last doctors had, between the two of them, only ever seen one case), and that I’m young enough that it has a high likelihood of progressing further, I’m a good candidate for it.
I’d done quite a bit of online research prior to the appointment, and it seems very promising. With the treatment, I stand a very good chance of not ever having to progress to RGP lenses. I think I might’ve annoyed the office by coming in with all my stuff (my old prescription, my RGP lenses, and a scanned copy of my last corneal topography that I’d bugged my old doc for because I wanted to show my friends online), but, hey, better to be prepared!
No trouble at all - as I said, this sort of thing is in fact my job, so I’m glad to have been of assistance. I understand the funding situation, but I’m glad there is some financial help there for you.
So, another update, 'cause I’m self-centered enough to do it.
I had the procedure on Friday. The first 36 hours were miserable–I ended up super swollen and barely able to see. Fortunately, they gave me Vicodin, which didn’t so much dull the pain as knock me out so I could sleep through it. Then after that, I felt pretty much normal. I don’t think I’ll ever have trouble doing eyedrops again after this whole thing, seeing as I’ve had to do them a billion times over the past five days. The worst thing has been not rubbing my eyes. They’re a bit sensitive still, so they kind of itch, but rubbing is a no-no.
Other than that, it was surprisingly easy. The procedure isn’t completely awful–I had the transepithelial version, which has a much faster recovery time. It was kind of unpleasant when I was looking at the light, but I think that was mostly because they had my eyes held open, and that got a bit of a flight or fight response from me. I haven’t noticed any difference, but A.) improvement isn’t guaranteed so much as stabilization and B.) it’s only been five days, so there wouldn’t be any improvement.
I get to go in for a follow-up in a couple of days.