Keratoconus

[etherealtruth]

Does anyone have any experience with Keratoconus? My 12 year old was diagnosed with the disease last Friday. I have a fair understanding of the disease ... his ophthalmologist is wonderful and there is a good deal of reliable information available online; however, I am wondering if anyone has had any personal experience.

Thanks for any info.

[kestrel91316]

1. I think one of my classmates in vet school had corneal transplants

for this condition 25 years ago???? So long ago, I'm not sure.....

[etherealtruth]

4. That appears to be the only "treatment"/cure today

There seems to be supportive measures/ symptom management, but nothing to slow or halt the progression.

Thanks for your input, any thoughts are greatly appreciated.

[Warpy]

6. I had my first transplant 2 1/2 years ago

While the stitches are in, it's terribly uncomfortable, like having fuzz stuck in your eye, and the stitches stay in for 6 months, minimum.

After that, if he's a good candidate for contact lenses, he'll be able to see quite well. I wasn't due to the underlying disease process so I required corneal shaping and now have 20/30 vision with a thick lens.

Rejection is infrequent as long as one is compliant with the eye drops. It really is a miracle operation that has taken me from total blindness in that eye to poor vision to really quite good vision---20/30 was the best I could get when I was a kid. I will have the other eye transplanted some time in the future, no question. It definitely pays off even with that miserable 6 months while the stitches are in.

The operation itself wasn't that huge a deal. They'll put him to sleep while they do the local anesthesia. He'll be awake but groggy during the surgery. He won't be able to see or feel what they're doing, he'll only see a bright light. His eye will be patched for the first 24 hours and then at night so he won't scratch it in his sleep. It's an outpatient operation, takes about an hour and a half and he'll be sent home as soon as he makes sense.

The stitches feel awful for the first couple of weeks and then they're only annoying. He'll use moisture drops to help soothe them.

The surgery isn't a really quick fix and 6 months is a long recovery time. However, it is miraculous.

[etherealtruth]

7. I am glad you had such good results

Thanks for sharing your experience. For me, everything is always magnified when one of my children are involved.

[fishnfla]

2. He needs to see a contact lens specialist or a cornea specialist eventually

sooner or later, and that will not be the MD but an OD. He is young and this is usually a progressive disease thru young adulthood

He may be correctable with specs now, then contacts( RoseK makes a great lens, its a hard lens), then someday may need a corneal transplant, which is a complicated surgery ( PKP) but they are using stem cell implants.

Your ophthalmologist may be great but he needs other help optometrists are best with contact lenses. He may also need to see a corneal specialist for the PKP, which maybe your eye doc is now?

yes i know all about this disease

[etherealtruth]

3. Thank you

As I said, he was diagnosed on Friday. I am still reeling. Of course, my little guy has a very limited understanding and simply knows he needs to stop rubbing his eyes. I am not completely sure of his current ophthalmologists cred's, but as time goes on I will certainly look into it further.

The prospect of hard contact lenses has come up and will be re-evaluated in three months.

From my reading it appears that this condition is more prevalent in Asians (?) .... it is a small point of interest as my former spouse is Indian.

Again, thank you!

[fishnfla]

5. Relax ( easy for me to say)

I know dozens of people with this problem. No Asians though. None of them are blind or at risk for blindness from K-Cone. One guy is in his 60's and a pilot!
The hardest part is getting a younger patient to adapt to the hard contact lenses, takes a lot of patience and practice and them special lenses are pricey. Thye can be uncomfortable, takes alot of adaptation. Kids tend to lose them too. If he can be corrected to an accceptable/functional level of vision (20/40 or better) with glassses go that route. If the disease progresses, take him to an OD who has alot of experience with "hard-to-fit" contact lens patients. He or she will most likely be in a private practice ( not a mall or a commercial place like Pearle,etc) and older ( experienced). Thye may have the RoseK fitting set or another one is the Apex lens. They may have to order the loaner set from their contact lens lab. The lenses work great. The doc may have a hard time refracting the patient ( all that 'one or two better' crap) thru the phoropter ( that mask-like thing they test your vision with), but then bam, you put the contact lens on and the patient can be refracted easily and get great vision. Its amazing in a nerdy sort of way

Hard lenses are safer overall, less chance of infection and soft-lens related problems. Comfort and cost are the problems with them. The child has to be self motivated to wear them, so dont push him too hard. If it comes from him, it makes everything easier.