Treating Keratoconus

Picture: anime girl writing.Hello, dear readers! ^_^

I have been preparing for my upcoming eye surgery (corneal transplant), however I have a very important post for anyone seeking help with their Keratoconus and may be browsing my humble personal blog for any hint or answer. I was planning to wait until after my surgery to write and post this, but it will worry me too much if I don’t do so now, as I realize there may be some misinformed people out there who are going around on others blogs and spreading misinformation. I want to prevent such things on my particular blog for my three readers (as far as I know) who suffer with the eye disease, because I do care! And yes, Rupert (my screen-reader) is enabled for this one, as I wish to be perfectly clear in my words, with little typos. ^_-

This is very important, so please read my words carefully: I am NOT an eye specialist of any kind nor is this a blog written for Keratoconus support. I’m just a blogger who happen to have Keratoconus, therefore everything I post on my blog about the eye disease is about my personal case and not to be applied to every case of Keratoconus. The purpose of my blog is to share about my life, personal interests, thoughts about life and happiness, not really to give education for all types of corneal diseases or Keratoconus. I do rant sometimes about my eye disease, but I only post things about my particular case only.

Even though I often read medical reports about the disease on PubMed, it does NOT make me an expert nor specialist in Keratoconus. I am not an expert in treatment options for anyone’s case, because I did not spend years in medical academia nor have my PhD in medicine. My posts are about my choices of treatment, under the guidance of my eye care specialist, that is all.

That said, I only have this simple advice to offer the few readers of my blog that suffer with Keratoconus, and for any new stragglers who may be passing by my blog: Seek a credible and well educated specialist in the field of Keratoconus or corneal diseases!

Do not rely on personal blogs (like mine or others) or unofficial sites to make the decision for what is the best course of treatment for you! Personal stories of eye treatment success do not necessarily mean that there is only one true course of treatment, as every procedure available have success stories. And not every procedure is appropriate for all cases of the disease! I’ll explain why.

animefirstaidThe honest truth about Keratoconus is that there is no cure for the disease, no permanent solution or fix, and every available treatment for the disease is to simply buy time and approve vision for just a little while longer. Perhaps science and technology will find an actual cure for this disease someday, but for now any and all available procedures are just temporary tools to help gain some vision, before the disease takes it away yet again.

These procedures include (but not limited to): RGP lenses, scleral lenses, intact corneal transplant, corneal transplant, and CXL (corneal cross-linking). All of these procedures have risks and benefits. What determines the best treatment for you depends on your particular case, as some procedures are not applicable for those in early stages of the disease and a few are useless to those in the late stages of the disease. I will not diagnose anyone’s case, as I said before, I am not qualified to do so. Dammit, Jim, I’m a writer and a math student… not a doctor! So, please consult a professional to help decide which options are best for you. ^_^

Here’s a few tips on finding a good specialist: Don’t be afraid to search around for the best specialists in Keratoconus and other corneal diseases. On your visit, don’t be shy to ask the doctor how many years they’ve studied and treated patients with Keratoconus. That is, if the doctor doesn’t rush to share that information with you upfront on your first meeting with him or her.

Be sure to bring up every option with your specialist (not just the procedure you’ve researched and have a personal liking for) and learn which options are most applicable to your particular case. Remember, every case of Keratoconus is different or in different stages, and this is why its best not to compare success stories of others to your own level of hope. It could be that the very procedure that was a huge success for someone else, may not be a good option for your case at all.

A good specialist will weigh out which options are best for your case, WITH YOU, and will explain carefully why one procedure will not work and why another procedure may work instead. Beware of doctors who seemed rushed and preoccupied with your payment to them, more so than answering questions or going over alternative treatments with you. If you spend more time discussing payment plans with a doctor, rather than actually addressing your questions and concerns about a procedure, it’s a good sign that you should walk away and find another doctor.

animeevildoc38Beware of any doctor who would claim that a procedure would “cure” your Keratoconus or will yield permanent results, as no such thing exist at this time. Unfortunately, there are doctors who seek to take advantage of desperate patients by giving them false hope, in order to “make the sell” of expensive medical procedures.

Lastly, don’t let anyone bully you into a procedure that you are not comfortable with. It is YOUR eyes and you get to make the final say in its treatment. Don’t allow doctors or anyone else to force their ideas of what procedure you should have or not on you. A good specialist will always give you options to choose from and whatever you decide is ultimately what is best for you.

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For my personal case, I’m in the advance stages of my Keratoconus, with a history of extreme astigmatism before the disease, and Dr. Maguire gave me two options. My left eye is completely shot, so there’s no other option but to have a corneal transplant in that eye. My right eye is very poor in vision, bad enough for a transplant, however still viable enough for an RGP lens. I was left with a choice of which eye I’d like to see from first, left or right. I was the one to choose transplant on my left, because if things go south, I will still have my right eye that I can try an RGP lens with.

If the surgery is a success, I’ll have a working left eye temporarily (from 10 – 20 years), then I may choose a second transplant or RGP lens for my right eye , if I feel greedy enough for it. I happen to do well with just one good eye, or so I once did in my youth, before the disease claimed both of my eyes. Trust me, I know what I’m doing! And I’m not doing it alone, I have a doctor on my side who’ve spent over twenty-five years studying and treating Keratoconus, as well as other corneal diseases. I’ll have my surgery February 2nd, 2016.

Anyway, thanks for reading, as always! And please be safe on the interwebs, everyone. ^_^v

-D

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Update: I’m Ready!

Picture: Running late anime girl.This is just a quick little update, as I realized that I haven’t been blogging here for a few weeks now. I’ve been a bit preoccupied, to say the least. ^w^

Besides the rush of the holidays, I’ve been preparing for my eye surgery, which will happen in a couple of weeks.

Next week, I have an appointment to visit the Mayo Clinic for a pre-operation exam, just to make sure I’m healthy enough for surgery. I’m not worried at all, my doctor is certain that everything is fine, but it’s just a precaution.  After that week, I will have my surgery on February 2nd!

My therapist asked if I was feeling anxious about it, but honestly it’s the only thing in my life right now that I’m not feeling any anxiety about! I feel excited and hopeful, although it’s early yet, so I may feel nervous closer to the date or when I’m sitting in the operating chair.

From what Dr. Leo Maguire has explained to me, I will be placed in a special operating chair for this procedure and wheeled into the operating room. I will be given some anesthesia, although I will not wake up groggy or out of it, unlike from when I had an operation in autumn 2015 to remove my appendix. No, I didn’t blog about that, because it was highly gross! =p

Doctor Maguire said that he would pack my eye with a lot of pain-killers, so I will not experience terrible pain for three hours after the surgery, unlike my experience after my appendix surgery. And he has prescribed codeine for me, which is on standby for when I need it after surgery. So I’m prepared to manage my post-operation pain.

Picture: Laura Bodewig eyepatch.Meanwhile, I am to return to Mayo, the day after my surgery to make sure that it was a success and that there is no sign of rejection from the new cornea. The risk of that happening is very low, but one can’t be too careful about it. I will have to wear an eye-patch and use special anti-bacterial drops, after the surgery. And I will have to make several more trips back and forth to Mayo, to check the eye and remove stitches for the next four or so months.

That said, I may not be blogging or reading blogs for a while, as I recover. I will try to keep my manga blog updated: (Lonely Hunter, if anyone is actually reading it! lol), every Sunday as usual, but no promises!

I’ve finished creating the entire second arch of the series, which I had planned to begin sharing in February, but it’s unedited and it may take more time before I’m able to work on it again. I apologize to the TWO people, that I know for sure, who are reading it. LOL!

Picture: The white rabbit, alice in wonderland.So… this isn’t much of a post, I know, but I’m kind of pressed for time at the moment. “I’m very late indeed, Alice!” said the White Rabbit, “No time to say hello, goodbye! I’m late! I’m late! I’m late!”

However, I shall leave you with one of my favorite Doctor Who fmv (fan music video). I can’t remember if I’ve shared this one before, I apologize, if it’s a repeat, but it’s the theme on my mind right now. I love the Tenth Doctor and the song very much! Click here: Doctor Who: Handelbars.

Thanks for reading, as always! I’ll see you soon! Many hugs! ^_^v
-D