Community Lounge, Introductions and General Discussion Discussion, Should I go on with it? in General Discussion; Have this disease called Keratoconus. Basically it's a thinning of the cornea on the eye. I've been diagnosed with it ...
Have this disease called Keratoconus. Basically it's a thinning of the cornea on the eye. I've been diagnosed with it at age 15/16 and has my first corneal transplant at age 22. Before the transplant I was lucky enough to see the top 2 or 3 rows of an eye testing chart, with my left eye. After the transplant I was close to 20/25 with glasses.
Now at the age of 35 my right eye has gotten worse. I was inspecting this and it frighten me as it's started off as my dominant eye. But lately I've been using my left for take pictures on my dslr camera.
4 weeks ago I had an eye exam. My right eye had shown that it gotten worse since my last exam 2 years ago. I went back again 2 weeks later and the numbers were totally different from the 2 weeks pryer. Which is cause that my right eye is getting worse. Drastic changes with in a couple weeks is scary in it self.
This was a new doctor to me as well. He mentioned me me this new procedure and I was very excited about it. Only one problem. It's not FDA approved yet. Thus I have to pay 100% out of pocket for it, $2,000.00. Which isn't a bad price. But, here are my concerns.
Why isn't FDA approved yet? It appears it's been out for much longer than the typical 16 to 24 months the FDA takes. Though those numbers could be wrong too.
Can I find out from the FDA if it's close to be approved?
If yes, how long will it take until insurance companies allows it to be covered?
I just don't want to spend the money only to have it approved the very next week. You know? Ha
All as I know is that the doctor who I went to see in Fairfield, CT has done it thousands of times himself as well as one of the other doctors in his office. It's a 5 minute procedure, unlike others that is the same but takes 30 minutes.
I want to get in contact with the doctor again to ask him a few more questions. Like what has his success rate have been. Typical age of patients, his long has it been since his first patient. And whatever questions you guys think I should ask would be helpful.
Below is a link to what this procedure basically is and what my disease is.
I would suggest that you contact the doctor in question him about the things that concern you. I would also go to FDA's web sight and search for information on the procedure in question ..... keep searching the sight until you come up with a reliable source of information on the procedure. I would also contact another opthomologist in your area to get a second opinion.
I would also try to talk to an Ophthalmology professor at a good university.
Get their ideas on the procedure, who they think is the best in the field, and if they know of any universities in the county that are leaders in research in the disease.
Whenever I have to do research, I always end by asking them for the names of two other people they know who I could call on the problem. It seems that the more you dig, you get closer to the top. I went through this twice when I was researching the Hep C cure I went through a few years ago, and ten years ago.
Automobile(s): 1991 STS, 1992 Fleetwood, 1987 Maxima wagon
Bay City, MI
Re: Should I go on with it?
Wow...it sounds like you're on the right path trying to research all you can. Don't be afraid to ask questions...in the end, you are your best advocate and while you can learn a lot from reading, it sounds like with this, you need to ask the docs themselves and don't stop asking until you know as much as they do. Good luck!
Thank you all for the advice. I always feel weird to question one's ability. But hardly ask other people in the field on what they think. I'll look into that. I also hope that the FDA will be able to give me an answer on their approval or non-approval and they're reasoning.