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Post Info TOPIC: I really need some help and support


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Date: Fri Dec 1 7:49 PM, 2017
I really need some help and support
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Hi all, 

I found this forum back a few weeks ago and ever since I have been reading other people's suggestions and advice and their stories and it has been somewhat helpful :) I was diagnosed with KC about three years ago and did a CXL a few weeks after diagnoses cause I truly was afraid of losing my vision. But honestly ever since then my vision, I feel, has gotten worse. I completed my bachelor's degree just recently (albeit it was much tougher to complete with KC) and now I am just sitting home cause of the poor vision I have and cannot seem to get it better. I was prescribed hybrid lens but they are not comfortable. After a couple of hours, they start to rub against my corneas and it feels like sand is in my eyes. Not really a viable solution. I saw a few other ophthalmologist and they recommended a transplant as my only hope to see better as I have literally become contact lens intolerant. I really am worried about my future and it has been rather very depressing for me. I honestly always think about my financial situation and how I am going to make a living when I literally cannot see at times. Driving at night is a nightmare and even during the day, it is hard to see street signs and lanes, even traffic lights. I am honestly lost and I can only imagine how the rest of my life will turn out. My parents are skeptical about a transplant and from a lot of the research I have done... it is somewhat bittersweet? It seems as if more bad than good could potentially come from this operation. My family and friends don't understand this disease either and they always berate me and say that I really can't sit at home all day... well the reality is I can't see the world around me and truly have no way of making them understand, including my parents at certain times. I really am tired of this disease, it's literally destroying my life and I am only 23. If there is any advice or anything you guys truly have to offer I would appreciate it. I know there are people on here who probably have it much worse than I do and I sound like I am complaining and whatnot but I am running out of options here I feel. Thank you to those in advance that have read this and will reply. 

-James



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James Polis
Deb


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Posts: 115
Date: Sun Dec 3 1:55 PM, 2017
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James, it is true that you can do almost anything BEFORE a transplant. There are many options...find the right Dr and the right clinic for you.

It might not be that your KC has progressed because it might be that astigmatism/myopia has increased.Its advisable to keep to monitoring check ups everyone 6 months to one year, what ever treatment you had or didnt have.

You need the right eye care professional who can advice you off ALL the options. Best of Luck.



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Date: Mon Dec 4 5:48 PM, 2017
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I'll second Deb's opinion that there are a lot of possibilities other than a transplant these days. My understanding is that a transplant is only indicated if the cornea "fails" due to the KC. I don't think poor vision alone is the indication for a transplant.

When you can't see well enough to function reasonably normally, it is demoralizing. The good news is that the visual problems caused by KC very often can be dramatically reduced. The bad news is that it is not easy to do and there are relatively few contact lens fitters with the patience and skill to do it. I would suggest a two prong attack.

First, be sure you are under the care of a good ophthalmologist who understands KC, probably a corneal specialist. Hopefully the doctor who did your CXL fills the bill. You should have been followed up several times in the year following your CXL, and you should be getting eye exams at least once a year now. You shouldn't have to be guessing about what the state of your eyes is. The purpose of CXL is to stop the progression of your KC. You need periodic tests of the geometry of your eyes to be sure they are stable. Having stable corneas makes the process of getting a visual correction easier. If an ophthalmologist has confirmed that your KC is stable, an optometrist can do the annual checkups to be sure nothing is going on that needs to be seen by the ophthalmologist.

Once you know the state of your eye health, you need to find a good contact lens fitter with the experience and patience to fit a KC patient. Don't be bullied into the idea that you'll get used to painful lenses. There is an accommodation process when you start wearing contact lenses. The eye undergoes physiological changes in response to the changes in the corneal environment created by the contact lens. You have to build up the wearing time over about two weeks to give the eye time to adapt. There is some discomfort involved. But if there is pain, that is wrong. In my experience, you won't adjust to it. You'll just be focused on those $%^%&*# lenses in your eyes and counting the minutes until you can get them out. Whether or not you can see doesn't matter because you can't think. Find a fitter who understands that and is willing to put in the time it takes to find lenses you can live with.

Good luck! Hope you can find the path for getting on with your life. It is out there.

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Date: Tue Dec 5 8:48 PM, 2017
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Hi guys, thanks for the replies and words of encouragement and advice. The problem is that I did, in fact, do CXL, and my KC seems to have stopped progressing. I went to another cornea specialist all the way out in Beverly Hills (Dr. Rabinowitz was his name) and told him that the contacts I was given (hybrid synergy lens) aren't doing well due to the fact they start to bother me after a few hours. Not so much pain but rather a very uncomfortable feeling and having this urge to HAVE to remove them. They were giving me great vision and was so happy when I first got them, but after a while they became uncomfortable, and at times it was impossible to put them on too, so I gave up on them and just tried my best with glasses.

The specialist said that my KC is so advanced he recommended two transplants as my only way to have a chance for a contact lens to fit better on me or for glasses to work. He suggested I do the right eye first as it is my worst eye and the left eye at a later date. There has to be another solution than a transplant right? He said that my case is advanced and that it is the only way for a contact lens or glasses to better work with my eyes. I am just off put by the whole transplant idea and have seen its various risks and complications and believe it to be too risky in my opinion. Have some people have had excellent results with a transplant? And also do you any of you know if Kerasoft lenses would potentially help? I heard they are soft contacts for KC, but I don't know if they would be able to fit my case. The Dr. I saw made it seem like that a transplant is the only solution. I am also thinking of getting another opinion. (the third one from a cornea specialist) He also said that he could do any procedure (intacs, thermokertaplasty, etc.) The Dr. also said that he would be wasting my money as they wouldn't help in my case, so he seemed to be a somewhat honest man) Thank you all again for taking the time to read my post and offer advice and suggestions.

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James Polis


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Date: Thu Dec 7 5:44 PM, 2017
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Hi James,

I have been seeing Dr. Rabinowitz for a long time. I was part of one of his studies on KC. He is indeed very honest and extremely familiar with KC. If he says transplants are necessary, I would certainly give his opinion considerable weight. BUT, one thing I have learned is that Dr. Rabinowitz is NOT a contact lens fitter and he doesn't know that much about them. If he says transplants are necessary ONLY because he doesn't think you can be fit with contact lenses, then I would give that opinion somewhat less weight. He might very well be right, but I would explore contact lens fitting further with a good fitter before concluding a transplant is necessary.

The difference between a painful and a comfortable contact lens can be quite subtle. That you get good vision from the Snergeyes is encouraging. Did you go back to the original fitter to see there was an adjustment that could be made to improve comfort?

I wear a Kerasoft IC lens (I only need one lens) and I find it comfortable and reasonably effective. My KC is moderate. While a Kerasoft IC is pretty easy to fit, probably the easiest of the specialty KC lenses, the fitting regime is contrary to the way other lenses are fit. It seems like a lot of specialty lens fitters don't actually believe a completely soft lens can work and don't take the time to learn how to correctly fit a Kerasoft IC. If you want to try a Kerasoft IC, try to talk to the fitter first and see if they enthusiastically believe in the Kerasoft IC before you go to them. If you want to know more about Kerasoft IC, you can read the fitting manual here:
www.artoptical.com/storage/docs/Kerasoft_IC_Fitting_Manual.pdf
The manual claims that advanced KC can be fit with a Kerasoft IC, although it might require getting trial lenses beyond the basic 8 lens fitting set.

If you want to explore scleral lenses with possibly the most advanced fitter and you can go to Texas to do it, consider Dr. Gemoules of LaserFit Vision. He uses an objective approach to lens fitting. As far as I know, he is the only one to successfully use such an approach for KC patients. laserfitlens.com/ (This is based on what I've read. I have not seen Dr. G personally.)

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CAD


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Date: Fri Dec 8 3:50 AM, 2017
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Hello James,

 

Just wondering if your doctor has tried a Keraring for you yet? I have had Keratoconus for 14 years (since I was 12) and am currently on my second cornea transplant in my eye right (first one rejected after 10 years) and had CXL on my left in its early trial stages. I am no longer able to be fitted with glasses or contacts due to my Keratconus but would prefer to avoid a transplant until no other option as I haven't been able to drive for over a year and my doctor will be performing Keraring soon and I have high hopes! Its non-invasive and if it doesn't work they take it out! I will update you on the change in my vision afterwards.

Make sure you are seeing a Keraoconus or Cornea specialist and ensure you are being fitted with contacts by someone who is also familiar with the disease it makes all the difference! 

I encourage you to definitely explore every alternative before heading down the transplant road as it is a long recovery and is always prone to rejection. 

 



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Chloe Davies


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Date: Mon Dec 11 9:33 PM, 2017
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Hi guys,

Again I want to thank you all for your advice and support. To answer some of the questions, you have recently posited me... Jim, Dr. Rabinowitz advised me that a transplant would be necessary so that I could potentially find lenses more comfortable, let alone bearable. He recommended two operations, one in each eye. I don't know if any of you had experiences with a transplant, but to me, it seems daunting and somewhat dangerous. Yeah, a corneal graft is the best way to potentially correct KC, but it looks so taxing and full of uncertainties. I might fly to Texas and see if I can get fit with an excellent soft lens but I have heard that kerasoft lenses need replacing every few months? Just seems so expensive :/ CAD, the specialist I recently saw, (Dr. Rabinowitz) told me plain as day that he can do any procedure I wanted, such as the keraring and he said to me that it would literally be a waste of my time and money as it would not benefit my vision, hence why he recommended a transplant. Thank you all again for your advice and suggestions :)

-James

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James Polis


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Date: Tue Dec 12 6:42 PM, 2017
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The type of Kerasoft IC I wear is supposed to be replaced quarterly although I have pushed one to 10 months. There is another version that supposedly lasts 12 months. Sometimes the lenses tear ending their life. Mostly it is just that they slowly get dirty. My opinion is that a good cleaning regimen will extend the life. I think a lens is about $200 to $300, so yes a bit expensive. I don't know what the annual replacement version costs. But I have insurance with 100% coverage for medically necessary contact lenses, so cost isn't an issue. In most states of the United States, you can get an individual vision plan from EyeMed or Humana that has 100% coverage for medically necessary contact lenses:
individual.eyemed.com/
www.humana.com/individual-and-family/products-and-services/vision-insurance/

If by "fly to Texas" you mean to see Dr. Gemoules at LaserFit Vision, he does not fit soft lenses. He fits scleral lenses only. I think Dr. G might be able to review your medical records before you go to Texas to give you an idea of whether or not you are a candidate for scleral lenses as he fits them. Dr. G does not take insurance by the way.

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