Keratoconus, others treatments than transplant

Hoi

I have a keratoconus at my right eye. Ophthalmologists usually say there is a high probability that the other eye is "infected" too. They all suggest i do the surgery because "keratoconus cannot be healed by another treatment, nor heal by itself", what they say... But i believe there are some cures more efficient. Corneal transplant is ******* expensive and lasts some years, ten at best before it needs another surgery.... Plus, the cortisone drops brings terrible side effects...

So i want to find another treatment. Im pretty sure its easy to heal, some intuition... Any ideas?

Thx for answers!

Depending on how severe it is, it can apparently be managed with ordinary contact lenses: www.allaboutvision.com...

Check with opthalmologists in your area (google for opthalmologist and keratoconus.)

i can only think of trying to strengthen connective tissue, although eyes are probably a bit more complicated than, say blood vessel walls, the principle should be similar...


that said, i'm not very inclined to give quack advice, so i suggest you do a search on the 'Pauling therapy' (named after Linus Pauling) and proceed from there. this therapy was designed to alleviate cardiovascular damage, an entirely different animal, but similarly related to connective tissue in one way or another.

the cornea's makeup should be taken into account, of course. note that this approach might work only if a deficiency is the underlying cause.

Hey _damon!

I also have Keratoconus, I hardly ever hear of any one else having it.

Mine was also mostly in my right eye, I was fairly mild but over time it has developed slowly and does affect my left.

I used to wear a ridged gas permeable contact lens (just the one on my R eye) but I could never get used to it, and the eye doctors could never get the shape right. So I was happy just wearing glasses... Well in fact I hardly ever wore anything to correct my vision, and my studies almost defiantly suffered for it. I have some serious tinnitus 24/7, I reckon the Keratoconus has something to do with that.

The ophthalmologist's always said that wearing the contacts would retard the development of the condition - but they were as fed up with me as I was with the contacts... I am a bad patient, and the ophthalmology department round here is over stretched and underfunded - you sit in the waiting room, and if your luckey enough to be able to read all you can see is warning signs about the asbestos

Go have a look at the UK Keratoconus Self Help and Support Group they list 10 treatment options -

Mini-ARK

Mini-ARK involves peripheral partial thickness radial incisions near the edge of the cornea where it is steep to flatten the cornea locally. A guarded diamond blade is used. Sometimes this is very successful, but it may cause quite a lot of glare and halos early on, which tends to settle with time.

Scleral lenses

Many people with keratoconus are very happy with Scleral lenses. They are often quite scary to look at for the first time, as they are much larger than other contact lenses, typically being about 25mm in diameter.

I don't much fancy that one - that would look a bit freaky!

Ah just found this one again: National Keratoconus Foundation

Intacs

Intacs are thin plastic, semi-circular rings inserted into the mid layer of the cornea. When inserted in the keratoconus cornea they flatten the cornea, changing the shape and location of the cone. The placement of Intacs remodels and reinforces the cornea, eliminating some or all of the irregularities caused by keratoconus in order to provide improved vision. This can improve uncorrected vision, however, depending on the severity of the KC, glasses or contact lenses may still be needed for functional vision. For more information go to: www.intacsforkeratoconus.com

This is the one I was looking for ^^^ - I'm really thinking about looking into this seriously.

Other than that I've been following developments in artificial corneas... The big problem they had was developing a material that would both bond into the eye skin (for want of a better word) but would also not allow skin cells to grow over the outer surface. They cracked that, so say in 10 years you and me could have bionic corneas and all like head up displays - giving us superior visual abilities! We could be the first main stream cyborgs!!!!

Hope that helps

Edit:

You tube link Keraring ICRS for keratoconus side camere view

Thx for reply. My keratoconus is in final stage, type III/IV, depends of the country. But in the six last months, there was no evolution at all. I have often read that contact lense are very INappropriate for a keratoconus. The cornea is already thinner, it seems logical to me that make more pressure on the eye will result in a faster deterioration.

I heard that the keratoconus is more common in italia (1/700) and japan (1/450!!). In US its 1 person on 2000 am i wrong? That would be interesting to know what kind of treatment they use in Japan. I heard that some researchers believe that the cause is from a parasite. Here is the link

I wonder how a shaman could heal an eye disease such the keratoconus. If someone here could bring some answers, would be great..

[edit on 8-3-2009 by _damon]

Damon,

The treatment mainly depends on how bad your visual acuities are and what visual acuity you can tolerate.

Typically, treatment is with RGP contact lenses. Several companies have specialty contact lenses for keratoconus, of which I am sure you have tried several.

If you find RGP's too uncomfortable, you may ask about Synergeyes (soft contact lens with an rigid center... more comfortable) or piggyback fitting of RGPs.

Intact are the current treatment being pushed by OMD's. It is "reversible" however post intact surgery patients are typically a pain in the rear to fit with an RGP, so you better hope it turns out right, or you'll have blurry vision with contacts after.

Collagen cross linking is the new kid on the block. Not approved yet in the USA. Clinical testing is very promising.

The bottom line is, if you are comfortable with the comfort/vision of your RGP's i would not change. Corneal transplant should be the last option. Of course, pretty much standard if you go to corneal hydrops. And pred forte drops make your eyes feel better.. I dont know what your talking about!

oh yeah, and the research about coming from a parasite? bogus.

Originally posted by slidebyem
Damon,

The treatment mainly depends on how bad your visual acuities are and what visual acuity you can tolerate.

Typically, treatment is with RGP contact lenses. Several companies have specialty contact lenses for keratoconus, of which I am sure you have tried several.

If you find RGP's too uncomfortable, you may ask about Synergeyes (soft contact lens with an rigid center... more comfortable) or piggyback fitting of RGPs.

Intact are the current treatment being pushed by OMD's. It is "reversible" however post intact surgery patients are typically a pain in the rear to fit with an RGP, so you better hope it turns out right, or you'll have blurry vision with contacts after.

Collagen cross linking is the new kid on the block. Not approved yet in the USA. Clinical testing is very promising.

The bottom line is, if you are comfortable with the comfort/vision of your RGP's i would not change. Corneal transplant should be the last option. Of course, pretty much standard if you go to corneal hydrops. And pred forte drops make your eyes feel better.. I dont know what your talking about!

oh yeah, and the research about coming from a parasite? bogus.

Special contact lenses or not, its the same, useless. Lenses, as i said, are more dangerous for the eye than to do nothing. Even the ophtalmologists i met told me it was risked to put on contact lenses when the disease is in last stage. Personally, i think contact lenses are useless for a keratoconus. Because: it makes it develop faster. Of course the eyesight is better, thats the only advantage of these lenses.

I dont care how bad is my eyesight, what i want is to heal. Im not the kind that accept something so called incurable and that satisfied with a temporary crutch such lenses. I don't believe in inevitability.

About cross linking, sorry to disappoint you but it works only for minor keratoconus. And of what i heard about it, never i will choose this option.

About the drops, it causes long term bad side effects such cataract or glaucoma. These drops are needed to avoid a rejection when you do a corneal transplant.

"and the research about coming from a parasite? bogus" As if you know anything about it...

i found a website written by someone who claims to have had moderate success.

healingkeratoconus.tripod.com...

may main contention would be that given the combination of counter.measures and exercies, you'll never know what's just ritual and which parts are truely effective.

curiously, aspectes of the article remind me of an old thread i posted years ago:

5. Eye exercises: The first time I heard about eye exercises, I saw an article in the newspaper on Meir Schneider who had previously been blind but restored his sight enough through eye exercises so that he was able to obtain a driver’s license. His DVD, “Yoga For Eyes,” came with an eye chart, so I was able to test my before and after vision. At the end of the first session, I was able to read one line higher on the eye chart. My doctor is a staunch advocate of eye exercises.

compare that to

www.abovetopsecret.com...

Originally posted by _damon


Special contact lenses or not, its the same, useless. Lenses, as i said, are more dangerous for the eye than to do nothing. Even the ophtalmologists i met told me it was risked to put on contact lenses when the disease is in last stage. Personally, i think contact lenses are useless for a keratoconus. Because: it makes it develop faster. Of course the eyesight is better, thats the only advantage of these lenses.

I dont care how bad is my eyesight, what i want is to heal. Im not the kind that accept something so called incurable and that satisfied with a temporary crutch such lenses. I don't believe in inevitability.

About cross linking, sorry to disappoint you but it works only for minor keratoconus. And of what i heard about it, never i will choose this option.

About the drops, it causes long term bad side effects such cataract or glaucoma. These drops are needed to avoid a rejection when you do a corneal transplant.

"and the research about coming from a parasite? bogus" As if you know anything about it...

If contact lenses pose a problem, that means that you are probably closer to more acute complications, which would render most of the above said therapies pointless (eg intacts, contact lenses, crosslinking) due to possible complications.

Yes, Pred Forte has around a 30 percent chance of raising IOP's, and can cause cataracts to a lesser extent, but for many people it increases quality of life.
Yes, collagen crosslinking uses harsh methods to accomplish it's goals, but for some people it is a

The link posted from the older thread about stressors by Western Culture is right on. Anecdotally, South America has low hyperopic prescriptions while we tend to have more moderate myopic prescriptions here. That is caused by the stress of reading up close. Unfortunately, said exercises are going to be less useful for for someone with keratoconus because the physical/geometric optics of the cornea are warped. The thing that said exercises can do is maximize what vision is remaining.

Good luck in your endeavors. Message me if you find anything that works.

I'm resurrecting this old thread of mine. The "disease" is still here but hasnt changed for years. Only one eye is sick, the other is still perfect. Unfortunately as you guessed i didnt find any cure. There were some leads but nothing really helpful in my case. Cause remains unknown...

There are new treatments like cross liking or RK but they are for early stages. Mine is untreatable because of the severity. An attempt can be done but there are "risks" as they say. Anyways these treatments are still limited as they dont make your eyesight perfect again as it should if it was HEALED properly.

New researches are being done but instead of trying to find the causes, like always they just keep focusing on symptoms alone. Some independants are promising but so slow its pathetic. I dont expect much from conventional medicine anyway.

I have the impression that keratoconus is coming from mental conflicts, at least in my case. Not that im saying there are no physical and environmental factors but there is a possibility that it is mind related. I noticed that after a good sleep the cornea seems flatter than the night before. It looks like it is constantly trying to get back to the original shape but without much success. I still have to try the dark therapy as it "may" be possible that total darkness with relaxation promotes healing.

I still welcome any ideas or tips. I'm sure there is still a lot to try. If you cured your keratoconus or found a way to revert it or even lessen its magnitude, or know someone that did, dont hesitate to talk about it. I would be really interested to hear the opinion of a Shaman about this disease too.

reply to post by _damon


that's unfortunate... but any feedback is appreciated.


what exactly have you tried so far? you mentioned slow progress, how slow and by which means?

I have KC on both eyes. Have you looked into synergeyes lenses?

Its basically a hard contact lens on top of a soft contact. Its the only lens I can wear for extended time (From wake up, to Bed time). Prior to that I tried everything including the piggy back method and nothing worked since it would cause intense pain or discomfort for me. Then I found out about those lenses and I couldn't be happier. Also the only way I can wear them for that long is using the refresh plus eye drop in individual vials.


contacts:
www.synergeyes.com...

Drops:
www.amazon.com...


Good luck.

I wear Synergeyes Duette MF, because I ended up with astigmatism and presbyopia as I got past 40.

The best part about Synergeyes is that you can wear them on a motorcycle with nothing but sunglasses. No blow-out, no dust/dirt issues, no dryout. The local opthalmologist markets them as "biker lenses", and they are. I'm surprised the company doesn't look into that.