My Keratoconus Getting Worse and Painful Contact Lens

I am still only wearing one lens ( semi- scleral or Jupiter contact lens) on my left eye. The Lens is like a very large RGP. It doesn’t give me crystal clear vision like I had with regular RGP lens but its very very comfortable.
I was SUPPOSED to get fitted for new one several months ago- however when I was at regular eye doctor she said lens looked fine.
I do notice more pain in my eye. It gets quite sore and sometimes a feeling of pinching or sharp pain in the eye. I notice it is especially bad were eye is dry - while driving in heated car for example.

When lens out can barely see anything in left eye- horrible distortion which makes watching TV before I go to bed a pain.

I am trying to keep lens of right eye for as long as possible.

A few people have posted comments on how much they love the Synergeyes.
My fitter is considered top in Canada and specializes in Keratoconus and PMD. She sees about 20 + patients a day. She refuses to fit people in Synergeyes because she feels they don’t supply enough oxygen to the eye. She does think they will be a hybrid on the market in next couple of years that will work but right now they can’t get the soft skirt to stay attached to rigid lens. She says she has always been able to find a lens solution that works without resorting to using the Synergyees.
I am currently in a Jupiter contact lens ( semi scleral ) and comfort and fit is great. The vision I am not thrilled with but I am getting a new lens next week.
Apparently it is too steep and fluid is getting in behind lens and changing prescription. It sure is frustrating and been a year since I was diagnosed and still not happy with my vision.

Jupiter Semi- Scleral Contact Lens

Well After months of trying to wear a regular RGP contact lens I am in a semi Scleral Jupiter lens. I love it!
it is about the zie maybe bit bigger of a soft contact lens. It is bit scary becasue it is totally hard. The learning curve on getting it in was difficult I will not lie. Took about 10 tries. Taking it out a breeze.
They are VERY comfortable the dont move and extremely comfortable. I wear at least 8 hours with no problem and often push it to 10+ my eye is sore. If I wear for 12 hours my eye is sore and sore the next day. I do notice vision not as clear as with RGP. I really really could not get a good fit with RGP and tried what feels like a zillion different lenses. I felt like my vision was in hi def with the RGP and these are still more like VHS or maybe a a dvd. being able to wear these and no risk of them popping out all the time has been great and well worth it however. With rgp I did not need reading glasses and I do with the Jupiter contact lens. I go back in couple of weeks for progress check and will see what they can do.

Easier Contact Lens Removal with Suction Cup Tool

Having Trouble Removong Your Hard Contact Lens?

RGP Inserter/Remover
eek- the title of my post is much scarier sounding than it is. I got a RGP Inserter/Remover. It is small silicon tool with a tiny “suction cup” on the end to aid in the removal of my hard contact lens. You can also use to insert but I have never bothered. When I have been removing my hard lens it often slips the hard lens edge scrapes my eye or worst case then lens does a flip and I have lost TWO ( at $185 a pop!).
None of my local optometrists know what I as talking about when I mentioned a suction cup to remove hard lens.
Finally at specialist they not only knew about them but sold them and showed me how to use. The cost was 5.00 and well worth it.

Still No Contact Lens for My Keratoconus

Yes, its been almost 8 months and I still don’t have a properly fitting contact lens for my keratonic eye.
I was diagnosed late August this year and have jumped though a zillion hoops to get help.

I go to a teaching hospital and care is excellent- just the process takes a long time.
If you are diagnosed with Keratoconus or PMD I cannot emphasis enough how important it is to get some one with experience with the disease.
The first eye doctor to diagnose was very nice, experienced and competent but just didn’t have much experience. After a few tries at fitting me with a hard rigid gas permeable contact lens she went to SynergEyes contacts which are not only expensive but don’t allow as much oxygen to the eye.
By fluke I ended up at School of Optometry and got “experts” to do fitting.
Last week was I HOPE my final fitting for a while. The guy did tell me most people with Keratoconus take about a year from diagnosis to get a good fit (!) Which no none told me at beginning.

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