Quicktopic posts: Aug 2003

[eamonn gillespie]

Hi Jannet Manning & Anne
thanks for responding to my request for a support pack to give to my course director.
Jannet i have left a message on your voice mail. It would be great to chat to you before i begin the course - if not
sure i will be in your neck of the woods come sept.
Thanks a million for both yourself and Annes's help. I really appreciate it.

eamonn_gillespie@hotmail.com

Eamonn

[Godwill Iheagwaram]

Theres a nice lady at Ninewells in Dundee though she seems a bit snooty sometimes
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< replied-to message removed by QT >

[Jan]

I have recently had a corneal transplant for keratoconus. Now my pupil in that eye is paralysed. Have you ever heard of that before?

[Andrew Thomas MacLean]

I'd go to see my GP. Tell him/her about your optician's suspicion that you may have KC. Your GP may be able to nudge you up the opthalmologist's list.
Meantime, don't panic. Scotland is well served by excellent hospitals. All the best.
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>From: QT - mark <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: QT topic subscribers <qtopic+subs@quicktopic.com>
>Subject: Keratoconus
>Date: Wed, Aug 13, 2003, 9:41 pm
>

< replied-to message removed by QT >

[Susan Mason]

Advice again please (all I seem to do is ask questions)

I am a relatively new scleral lens wearer, I have had them approx 6 week now after them having to be returned to have the prescription changed in June at which point I had them for 4 weeks. Anyway my optometrist had suspected back in june that I maybe was not getting on too well with Baush & Lomb cleaning solutions or possibly I was not cleaning it off well enough. With extra long (feels like ages) rinsing under the tap at cleaning time this problem seems to no longer be there however, I do whilst wearing the lenses feel the need to take them out and rinse them in normasol saline before replacing them sometimes once or twice a day. My eyes have always been quite dry and since being a small child I have always suffered with slicky guey bits in my eyes at random times (my mother and father used to refer to it as 'sleep' and would suggest I had not washed my face well enough, even though on occassions I could suddenly get these sticky jelly lumps several hours after getting up). I have also been using minims artificial tears when I have removed the lenses for the day as some times my eyes have felt rather dry. I have on Thurs just been back to the hospital and been told it is now 3 months before they next need to see me (feels like heaven as I have been going approx every 4 weeks since the end of May 2002)I have been advised to call them if I feel uncomfortable with anything and when I discussed my sticky jelly lumps and what I consider to be 'dry eyes' I was given a bottle of miraflow and told that it is a solution which Ken Pullum suggests (I am aware other people use this solution for cleaning their sclerals) and told that if I was to use a tiny little spot of it front and back before inserting my lenses I may feel that they were more comfortable due to them 'wetting' better. I was surprised by this and did ask to clarify, that I was not to rinse it off and was advised no dont use much just a spot and dont rinse it off unless you feel you have inadvertently put too much on. Having thought about this afterwards and seeming at present to be able to find a problem with anything even if it is not their I would be interested to hear what others do. I remember that about 15 year ago with soft lenses I once put them back in too soon not having left them to neutralise/disinfect long enough. This caused quite a lot of eye watering and I recall I did not wear the soft lenses for several days afterwards, this in itself was not too much of a problem as I did not have (or know I had) KC at the time and I had a perfectly good pair of glasses to wear and could also manage quite well without. Now I am lost without the sclerals and so am worried that trying this may cause unnecessary problems, not being able to wear them for a week or so which at this point really depresses me.

Any ideas???

[Rob Armstrong]

Hi Susan,

I've just read your post in alarm-Miraflow, directly into your eyes?! Are you sure? The instructions specifically state "DO NOT ALLOW MIRAFLOW TO COME INTO DIRECT CONTACT WITH THE EYE" I'm no doctor, but the manufacturer makes its warning pretty clear. I was told to use it for cleaning my corneal lenses because my previous cleaning solution (Boston Advance, now Bausch & Lombe I believe?) wasn't shifting the daily build up properly-its extra strong stuff. From what you describe, my eyes are similarly dry and sometimes sticky. I remember that being mentioned when I switched to Miraflow, to improve wetting. But NOT used as you describe-although I bet it would definitley make your eyes water!

Just hope you haven't already tried it, that could be an unfortunate misunderstanding.

Rob.

[John Smith]

Susan,

I agree totally with Rob. I've not had my scleral that much longer than you, and I saw Ken himself. He did suggest using Miraflow, but not, I think, how you've been told to do it. I'm sure Ken won't mind me quoting from his leaflet on maintenance of Sclerals:

Using Miraflow as a combined cleaning and conditioning solution
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...however, it is a cleaning rather than a wetting solution, but if mostly rinsed off the surface before insertion, it can be used as a combined cleaning and wetting solution with good effect.

Procedure:

1. Wash and dry hands
2. Remove the lens from the case and apply Miraflow to the front and back surfaces of the lens.
3. Rinse surplus Miraflow from both surfaces with saline solution
4. Fill with Amidose
5. Place onto eye as directed.

Miraflow has a strong smell. It is easy to detect if there is still too much on the lens. CIBA Saline can be used to rinse off surplus Miraflow prior to insertion. Don't use tap water.



Hope this helps,

John

[Paul Trail]

I have had kerataconus for three years and now i am waitingfor a corneal transplant in my right eye. I have almost no vision in my right eye and poor in my left. I have been waiting since February for a donor, I am 16 and i was wondering if anyone could tell me roughly how long people wait for the operation. I think it might be longer because i am young and need a younger donor. I am due to start college in september and i am gettin a bit stressed waiting. Look forward to hear anybodys views. Thanks Paul.

[Savina]

Hi I received a diagnosis of Keratoconus in July although the optometrist who diagnosed me felt I have had it since my early teens.

I am 36 now and have my life and capabilities restricted due to vision problems. Since my teens I have received many diagnoses to explain the problems... light sensitity... anemia... Lazy eye... severe distortion of the cornea having no name.

A lot of my symptoms fit Keratoconus but others I have been told (incorrectly or not) do not or are too extreme for Keratoconus. Although I am not sure that "too extreme" is possible with Keratoconus or not.

So I am asking around concerning my symptoms as my General Practitioner knows little about this disease. (originally thinking some of the visual symptoms were hallucinations).

In your experience are the following symptoms consistent with Keratoconus.

1. Extreme Glare/Light Sensitivity: As light increase capacity to see decreases causing severe distortion, dayblindness, etc... leading to legal blindness but only under the influence of light... including daylight.

2. Time taken to recover previous level of vision after exposure to Light can be hours, often 24 hours or more.

3. Tiny pieces missing throughout each individual letter when I try to read.

4. Constant ghosting (more horizontal than vertical)

5. Constantly present Halo (Aura) around people, animals, and objects. Present day and night for at least 16 years.

6. Severe episodes with a worsening of reaction to light and vibration of the air causing motion sickness and inability to do things such as reading.

7. Smaller Starbursts in the daytime... coming even from reflected surfaces, Larger Starbursts at night... right eye double/tripple image of each Starburst, Left Eye Double image of Oval egg Shaped Starburst which is mostly black in the middle... some spots of light.

8. Mottled Haze Vision... present for over two decades at least... made up of millions of tiny particles across my entire visual field... some sparks of light... some whitish tiny spots admidsts a darker haze... sometimes specks of color that don't belong with what I am looking at. Sometimes it looks like interlocked particles or crystals.


9. Once in a rare while flashes of light to the side of my eye or above. Not connected with migraines.

10. Difficulty with picking out objects against backgrounds with which they blend into. For example my husband at the Supermarket wearing a dark shirt instead of a colorful one. I can look right at him and not see him.

11. Variability of Vision sometimes even moment to moment. For example once with an eye chart I would see the print and then I would not... on and off constantly.

12. Longer time taken to process information visually. For example my husband sees a signs and reads it before I have the sign in focus enought to read it.

13. Misjudging distances and timing.

14. Right eye (better eye) sees things closer... Left sees things consistently slightly farther away... and consistently slightly darker overall. But the right eye has a dark shadow in the middle.

15. Blind Spots and Glitches. A car is far away ... and suddenly it is close... I did not see the part in between. The lights on one car appear to be on another car but then the image shifts and it is where it belongs.

16. The air vibrates... slow tiny vibrations... or sometimes so fast it looks like white water rushing and I can not see through it. Seizures and Migraines have been ruled out.

17. The world seems to suddenly glitch and shift... as if it adjusted.

Thanks for any help you can give...

Savina
Savinarose@hotmail.com

[Stoop Hoop]

Hi there to all using the site. I am 20years old and have been diagnosed with KC since i was about ten years old. I wore hard lens (and still wear one in my right eye)since then. As i have aged my left eye has become worse and worse and i am now due to go to hospital tomorrow for a corneal transplant. I was just wondering how long the recovery period is, and any problems i should expect to deal with,mainly because i am a student in manchester and need to work to pay off my overdraught. Whilst
reading this forum i read that some of you have trouble with early mornings, just to confirm that i have the same problem, and getting up about an hour early usually does the trick.I was told by my lens specialist it is to do with a build up of sleep(that horrid guppy stuff,)also yuo do not blink throughout the night, which is how the eye cleans itself.
Too savina i would hav to say i am sorry to hear of your sight problems it seems you have more than just KC, but i have heard of the conditions you expressed.But again i think you will need to see a specialist to determine exactly what is wrong. At night i do get the halo effect when out and about especially from street lights, but this is enourmously restricted by closing my left eye (the worse KC eye) out of which i see nothing but blurs of colour and light.
ALso i am an identical twin, whilst i have KC in both my eyes my brother only has it in his right eye. We also both suffer from heyfever. Now to the best of my knowledge and the doctors i have spoken too, they have said there may be a possible link between the two. But this is too be taken with a pinch of salt as there is not medical research that i no of too back this theory up.(is that any help to anyone)
To Paul Trail /m1942 i have had to wait three or four months for my operation and expected to have to wait 18, so i am very pleased. I only hope yours comes along in the near future. I was also told that they are more hesitant to carry out the procedure on younger patients as the eye is still developing.Best of luck all the same.
And one last thing, what is the scleral lens. I wear hard gas permeable lenses in my right eye that are fine until i go outside where even the slightest breeze can carry dirt into my eye somewhat crippling me until i mannage to clear it.Is the sclearal lens different and more comfortable?? Any info would be much appreaciated. Best of luck to all.

Steven Hooper