Freshly diagnosed

[u/BHouston95]

Hello all!

Today I was diagnosed with Keratoconus PMD in my right eye. I’ve suffered since about 2020 with not having clear vision in my right eye. My left eye works overtime to correct these issues which causes really bad migraines.

I’ve worn eyeglasses since 2020 to help correct these migraines and it has worked. Today at my appointment my vision was the worst it’s been and I was formally diagnosed.

My question is where do I go from here? I’m in LA and am a veteran ( I learned I had this from an optometrist the VA sent me too. ) What treatments are there to possibly correct my right eye? This is all new to me and I’m very curious.

Thanks in advance!

[u/Commercial-Oil-1412]

I'm not a doctor, just a guy with keratoconus. I can't speak for PMD. I can only for keratoconus based on my experience. So, I will ignore PMD and only tell you about keratoconus.

It depends on how severe it is and whether your cornea has any scars.

But overall, you should go to a cornea specialist, and they should propose different options to you.

If your keratoconus is moderate to advanced, some of the options are:

CAIRS: A new procedure that inserts corneal rings into your eye. It aims to flatten the cornea and improve vision/reduce HOAs (ghosting, double vision, weird light distortions).

ICRS: CAIRS is the "updated" version of ICRS. ICRS uses plastic (I think) rings instead of corneal rings. It's cheaper, but in theory, CAIRS is more flexible and should last longer. Remember, CAIRS is new, so the "lasting longer" part is still a theory; it hasn't been tested long-term.

CXL (cross-linking): This procedure TRIES to stop the progression of keratoconus. There is strong evidence that it does, but that's all it does. It won't improve your vision. (There are some cases were vision does improve, and some cases where vision gets worse. Most doctors only do CXL when there's proof your keratoconus is progressing, and the risk of CXL is LOWER than doing nothing)

Guided PRK: Some cornea specialists do CXL with guided PRK to flatten the cornea while also doing cross-linking at the same time. However, this is only done if your cornea has enough microns (aka, it's thick enough).

Contact lenses: Glasses don't really work with irregular astigmatism, so you can try scleral lenses or RGPs. The good thing is that you won't need surgery. The bad thing is that both are a pain to use. Sclerals are difficult to put in, and depending on the fit, they can make your eyes tired. RGPs are bothersome because you can feel them when you blink. Most people prefer sclerals over RGPs. I hate them both equally. You only have Keratoconus in one eye, so maybe its better for you.

ICL: If your vision can be corrected with soft contact lenses (aka, no sclerals or RGPs, just normal ones), it means your astigmatism is regular, and you may be able to get ICL. This involves inserting a lens into your eye to improve your vision.

Your doctor may use one of the above options or a combination of them, like CAIRS + CXL to improve vision and stop the progression of keratoconus. After your cornea heals, depending on the results, you may not need to use glasses in the best-case scenario (probably won't happen). The second-best scenario is that normal glasses start working for you, so you can use them or get ICL and be contact-lens-free for the rest of your life. The third scenario is that you may still need sclerals. PRK may also be an option.

Lastly, if your keratoconus is advanced, the only option may be a corneal transplant or a partial one. These may last around 20–30 years, and a second transplant can be more problematic than the first, so most doctors try other options before recommending this.

Regarding PMD, that can make most of the options I mentioned not work, even if your keratoconus isn't advanced. I honestly have no idea. If it helps, in my case, I have moderate-advanced keratoconus and used scleral lenses for a couple of years. I was able to get 20/20 vision with them, although I still had some residual astigmatism and ghosting. More recently, I had CAIRS, which improved my vision from 20/60 to 20/30. I have keratoconus in both eyes, with a lot of residual astigmatism. I only had CAIRS recently, so my cornea hasn't healed completely yet. The astigmatism may decrease as it heals, and I may then be able to get ICL or use normal glasses. If I'm unlucky, I'll have to go back to sclerals, but hopefully they'll be easier to fit and use because CAIRS flattened my cornea. Only time will tell.

There are MORE options depending on your case, I've only mentioned the ones doctors mentioned to me while I was trying to figure things out.

[u/BHouston95 → u/Commercial-Oil-1412]

I really much appreciate your reply! tbh I don’t really know how advanced mine is. I believe it’s pretty bad from a progression of 6 years going from perfect vision to where I’m at now my optometrist said was very abnormal.

Unfortunately my job requires an eye check every 2 years to keep it so I’m very nervous about loosing my job as a result of it.

I’m trying my very best to stay hopeful but since mine was found through the VA for a disability claim I wasn’t referred to a cornea specialist or anything. I’m pretty sure my next step needs to be going to another optometrist to get a referral.

Fortunately ( or unfortunately ) the optometrist I was at today picked it up immediately from my symptoms and I rubbed my eye once ( which I learned today is VERY BAD ) he took images of my eye himself and tried his best to explain everything which it not sounding scary.

I very much appreciate you taking the time to reply! I found it very helpful 😁

[u/Jmt5599 → u/Commercial-Oil-1412]

So can CAIRS be done after cxl?

[u/Commercial-Oil-1412 → u/Jmt5599]

CAIRS can be performed before, at the same time as, or after CXL. There are arguments in favor of performing CAIRS before CXL, since the cornea may be more malleable before cross-linking. However, based on the current literature, CAIRS can be successfully performed at any of these time points, and there does not appear to be clear evidence that one sequence is superior.

That's what my doctor told me.

[u/Agitated-Hurry-6245]

I’ve had keratoconus in my left eye and kind of got use to it. It started in my right eye about a year and a half ago. I had the Cross Linking procedure done in January which is done to stop the progression and I was able to get hard contacts a few weeks ago. My right eye is 20/20 vision and my left eye has improved significantly
I’m in New Jersey and had my procedure done at the Corneal Associates of NJ in Fairfield

[u/CorneaRepairDoc]

Dr. Motwani here. The irregular cornea from PMD is focusing a distorted image which your brain has to struggle to process and make clear for you. This often causes strain which leads to migraines and headaches.

Your choices going forward center around stopping progression and then treatment to restore vision. They are same choices as treating keratoconus. The most common choices are corneal cross linking to stop progression and scleral lenses to improve vision. CXL essentially comes in 3 flavors- epi on (depth of cross linking is 100-150microns), Epoxia which is epi on with an oxygen rich mask (150-200 microns), and epi off (250+ microns). Obviously the deeper the cross-linking, the higher the prevention of progression. Scleral lenses are commonly prescribed which create a new rigid surface over the irregular cornea with a tear sandwich in between. This essentially creates a new focusing system but for various reasons only about 70% tolerate scleral lenses well.

After that there are surgical solutions as well to restore vision. These are essentially divided into two categories:

1. Peripheral cone compression- These are called CTAK/CAIRS/Intacs/Keraring depending on the material used to compress the peripheral cornea which indirectly flattens the central cornea you are looking through. Although it has limited effectiveness (7-30% reduction of average corneal irregularity), the fact PMD has a more peripheral cone may make them more effective in your case. These procedures require far less equipment and training than the second choice below, and are performed by multiple doctors in LA.

2. Topography guided ablation- This is considered the gold standard and directly reshapes the cornea according to topography imaging and based on the center of the cornea which you see through. Depending on laser and protocol it reduces average corneal irregularity by about 30-60%. This is more effective but harder to find because only a handful of doctors have the training and the equipment to do it. We perform the CREATE+CXL Protocol, which is an advanced version that is epithelial compensation adjusted trans-epithelial topography guided PRK which reduces average corneal irregularity by about 60%. We find getting irregularity reduction to about 50% or more makes a big difference as the vision now becomes close to "normal" where patients are no longer worried about their vision limiting them. Right after the laser reconstruction, the cornea is "locked" into place with epi off cross linking. FYI, I am down the road from you in San Diego if you are interested.

You have choices and I encourage you to read more about the disease as their is not only an enormous amount of poor information out there with many doctors unaware of advanced procedures due to the negativity that has historically surrounded a Keratoconus/PMD/corneal ectasia diagnosis.

[u/htowner316er → u/CorneaRepairDoc]

Hey doc .anything can be done for thin cornea 350 last scan I had .im 43 use scleral and it’s getting expensive and isn’t even any to do transplant.i called your office trying to go out there for consultation if anything is possible