Requesting some clarification, hopefully some reassurance

[PTlex]

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Hey all. Thank you for the time reading my post. I am a 2nd year PT student who is seeking some serious/informative posts here. Also let me preface that I am not looking for a diagnosis--I understand that any specific diagnosis regarding my health is to be received from my healthcare provider.

However, I left the office today of an OD with many unanswered questions and was hoping people here could give me better insight into what is going on with me and what to expect. Ill cut to the chase:

I always had poor vision as a child but made a fuss over wearing glasses. Parents just gave up and I never got an eye exam since. I am now 24 and had my first exam in over 15 years. I expected to have poor vision and get some lenses. Not the case.

Doctor does a series of tests and I can initially tell hes not doing a routine exam. Shining lights and slits, going back and forth between different glasses, etc. Bodylanguage... you have it. Completes what I would say was a very long and meticulous documentation form and then quickly tells me I either have or very likely have Korneoconus (sp), refers me to what Im guessing is an opthamologist for a cornea topography, and leaves the oroom without even asking if I have questions.

So needless to say Im here freaking out. Obviously researched whats going on via the scholarly google/wikipedia and I know this is the worst thing to do for a diagnosis.

Anyway, My questions

1) Is referring me for this more of a rule out type thing or a rule in? I know tests are either highly sensitive, specific, or both. Is anyone familiar with this?

2) Did I potentially do worse damage by never having this treated/controlled for so long.. in other words did I make it worse by not getting checked earlier in life?

3) If it is this condition, what should I expect? I know we as healthcare providers like to say every patient is different--but staistically speaking.... how do most patients progress??


Anything else anyone wants to let me know, please do. I highly appreciate every bit of consideration. The only other piece of information I got out of the doc was that I have B/L Astigmatisms that are severe... and acuity of L 20/30 and R 20/60

Thank you again

 

[KHE]

Keratoconus:

1). You did not make it worse by not wearing glasses.

2). The test will determine if you have it and how severe it is.

3). Progression varies among patients. Some patients progress fast, others don't progress at all. In general, the treatment consists of rigid contact lenses to smooth out distortion on the cornea. You can use glasses but the vision is not normally as good as contact lenses.

 

[PTlex]

Keratoconus:

1). You did not make it worse by not wearing glasses.

2). The test will determine if you have it and how severe it is.

3). Progression varies among patients. Some patients progress fast, others don't progress at all. In general, the treatment consists of rigid contact lenses to smooth out distortion on the cornea. You can use glasses but the vision is not normally as good as contact lenses.

Hi. I appreciate the information. My mother was horrified when I told her this and was starting to blame herself for not forcing me to go to the Dr as a kid so this is good news in that she wont have to accept this blame.

As for the Topography, i guess my question could be better phrased at how liberally the test is performed... How often do patients referred for suspected keratoconus have the disease vs how often do they not?

The doc said It was either this disease or two really severe astigmastisms. Would the physician typically refer out for imaging in every case presenting like this or did the Slit Tests etc give him more predictors that I have this disease?

 

[KHE]

Hi. I appreciate the information. My mother was horrified when I told her this and was starting to blame herself for not forcing me to go to the Dr as a kid so this is good news in that she wont have to accept this blame.

As for the Topography, i guess my question could be better phrased at how liberally the test is performed... How often do patients referred for suspected keratoconus have the disease vs how often do they not?

The doc said It was either this disease or two really severe astigmastisms. Would the physician typically refer out for imaging in every case presenting like this or did the Slit Tests etc give him more predictors that I have this disease?

Corneal topography is common.

Likely it was ordered due to the fact that vision was not correctable to 20/20 with glasses alone.

 

[PBEA]

it might not be kcone, it could be meridional amblyopia, in which case it is possible that not wearing the glasses from a young age may prevent your vision from being corrected now. Topography will help confirm the diag

 

[OpticalBlackOut]

Hey all. Thank you for the time reading my post. I am a 2nd year PT student who is seeking some serious/informative posts here. Also let me preface that I am not looking for a diagnosis--I understand that any specific diagnosis regarding my health is to be received from my healthcare provider.

However, I left the office today of an OD with many unanswered questions and was hoping people here could give me better insight into what is going on with me and what to expect. Ill cut to the chase:

I always had poor vision as a child but made a fuss over wearing glasses. Parents just gave up and I never got an eye exam since. I am now 24 and had my first exam in over 15 years. I expected to have poor vision and get some lenses. Not the case.

Doctor does a series of tests and I can initially tell hes not doing a routine exam. Shining lights and slits, going back and forth between different glasses, etc. Bodylanguage... you have it. Completes what I would say was a very long and meticulous documentation form and then quickly tells me I either have or very likely have Korneoconus (sp), refers me to what Im guessing is an opthamologist for a cornea topography, and leaves the oroom without even asking if I have questions.

So needless to say Im here freaking out. Obviously researched whats going on via the scholarly google/wikipedia and I know this is the worst thing to do for a diagnosis.

Anyway, My questions

1) Is referring me for this more of a rule out type thing or a rule in? I know tests are either highly sensitive, specific, or both. Is anyone familiar with this?

2) Did I potentially do worse damage by never having this treated/controlled for so long.. in other words did I make it worse by not getting checked earlier in life?

3) If it is this condition, what should I expect? I know we as healthcare providers like to say every patient is different--but staistically speaking.... how do most patients progress??


Anything else anyone wants to let me know, please do. I highly appreciate every bit of consideration. The only other piece of information I got out of the doc was that I have B/L Astigmatisms that are severe... and acuity of L 20/30 and R 20/60

Thank you again

Corneal topography will be extremely useful in diagnosis. Both highly sensitive and specific without any cons. Just a quick scan and it maps out the contour of the front surface of your eyes.

"As for the Topography, i guess my question could be better phrased at how liberally the test is performed... How often do patients referred for suspected keratoconus have the disease vs how often do they not? "

Don't think we'll know the answer to that one as it's very provider dependent.

Here's a good resource if you're worried about it: http://www.nkcf.org/
(Although don't panic or even google too much until you see the corneal specialist)