Archived Messages
October 2004 - May 2006
Due to lack of space on the Message Board Forum, some of the older messages have been archived here:
Archived Messages prior to September 2004
Sorry for the inconvenience.
Contact Lenses
Loribeth, 39, USA. Oct 30, 04 - 2:09 AM
I was actually diagnosed about ten years ago. However I stopped going to an opthamologist and started going to an optomitrist. The optomitrist had never heard of this. Anyway, I am currently wearing contactt lenses and was wondering if you know if this is a good idea or not. I plan on going back to the opthamologist for somee follow up.
- Cheryl, UK. Nov 1st, 2004 - 8:15 PM
Good question - I wear contact lenses and asked my consultant if this was a problem and he said not. I was prescribed eye drops and asked if that would affect contacts - again he said not. Strangely when I read the paperwork with the drops one of the contra indications is wearing contacts! If anyone knows the answer I'd like to know! Thanks
- Jane, 48, UK. Nov 12th, 2004 - 8:55 PM
I wear contacts most days. I was told to put them in 15 mins after drops. Does anyone else get watery eyes? the past few days I sometimes look as if I'm crying
- Dr S, 34, USA. May 29th, 2005 - 4:16 AM
Contact lenses can be worn by someone diagnosed with Krukenber spindle or Pigment Dispersion Syndrome (PDS). Being told you have PDS does NOT mean you have glaucoma OR mean you need any kind of treatment. PDS MAY lead to glaucoma, but not always. Anyway, wearing contacts doesn't affect PDS. If you have been Rx'd drops for your condition, wait at least fifteen minutes after the drop before putting your lenses in. PS I'm surprised the optometrist had never heard of PDS/Krukenberg Spindle. I'm an optometrist and it's a basic sign we routinely check for (easily seen in the microscope)
Free eye tests in the UK
Emma, 32, UK. Aug 8, 05 - 3:04 PM
Hi everyone I found out that I was entitled to a free eye test on this site because of a risk of glocoma. I mentioned this to my optician, who checked with the NHS trust. They stated that I could only have a free eye test if the consultant had written and confirmed that I could have a free test. Is this correct?
- Tracy, 40, UK. Aug 8th, 2005 - 3:16 PM
Hi Emma, It was the optician that told me I was entitled to free eye tests because of the glaucoma risk, but when I tried to get the tests on a six-monthly basis, he told me that the free NHS entitlement (on grounds of glaucoma risk) covers ONE free test a year, unless otherwise stipulated by the hospital consultant. I have 2 hospital appointments a year, as well as the free test at the opticians, so I haven't asked the consultant to contact the optician for more tests - I feel eyeballed enough! Glad you found the site - keep in touch.
- Emma, 32, UK. Aug 8th, 2005 - 3:53 PM
Hi Tracy Thanks for that. My optician doesn't think I am entitled to one test a year unless there is written confirmation! I may go back to them on this. Also you mentioned you have two hospital appointments a year. Presumably this is for tests. What tests do they do? The consultant I have seen simply sent me away and told me to get my eye pressure checked once a year by the optican, and only come back to him if my eye pressure goes up. Should I have any further tests? I am just abit worried as with PDS it is obviously important to monitor the eyes. I only see my optician, no one else, should I be under the care of anyone else at this time? Any info would be brilliant
- Tracy, 40, UK. Aug 8th, 2005 - 4:34 PM
Hi Emma The tests done at the hospital are the basic chart test, then the visual field test, where you have one eye covered and hold a clicker - you look at a light in the centre of the screen and every time you see a flash of light on the edge of your vision (without actually looking directly at it), you click - then the consultant inserts drops in my eyes and examines them to see if there's any change in the pressure, or blocking of the drainage channels. Occasionally, drops to enlarge the pupil are put into the eyes, so that the consultant can get a better view... it's advisable to have a pair of very good sunglasses after having these drops! Your pupils will stay enlarged for a few hours afterwards, so you'll be advised not to drive. Does anyone know of any other tests that are done?
- Jane, 44, UK. Sep 26th, 2005 - 11:05 AM
Not that I'm suggesting being dishonest or anything ...... but I know that if you are over 40 and you have had a parent with Glaucoma (or say you have.. they don't ask for proof) then they automatically give you the NHS Eye Test for free at an opticians.
Laser eye surgery with PDS
Brian, 30, N.Ireland. Jun 14, 05 - 5:51 PM
Hi, I was just about to get lasek eye surgery done when the doctor notice that I may have PDS, and said I would need to go to an eye specialist and get tested before he could do the procedure. He said even if I have PDS I could still go through with the surgery as it would have no affect on this condition. Is this true? Thanks Brian
- Mark Coleman, 35, USA. Oct 5th, 2005 - 2:45 AM
I just saw a research papers on the effects of lasik on PDS eyes. Something like 20 eyes of 11 patients were studied. Lasik outcome was as good as expected 26 months after the procedure, and there were no changes in PDS, no atypical increases in IOC. The only note was that one patient classified as having pigmentary glaucoma was slower to heal and had "vision fluctuations" during healing. This patient did heal, and had improved vision after lasik. Other studies have also shown good lasik results, with no apparent worsening of PDS or increase in gloucoma risk - HOWEVER, the studies have not been longer than a couple of years duration. Although worsening of PDS or increase in IOC longer than 2 years after Lasik that is due to the Lasik surgery itself seems unlikely, they may be possible. For now, opthalmologists don't seem as concerned about it as they used to be.
How high is too high?
Pam, 48, USA. Jul 10, 05 - 4:33 AM
I've just been diagnosed with PDS. Does anyone know at what number of pressure it becomes medically necessary to start treatment? My pressures range between 29 - 30. However, my cornea's are thin so they have to add two points to it making my numbers 31 & 32. The doctor prescribed Travatan eye drops. Has anyone ever used them? What about the side effects? Any input is greatly appreciated.
- Natalie Farebrother, 34, England. Oct 16th, 2005 - 7:22 PM
hello my name is Natalie and im 31 years old i was diagnosed with pds about 9 months ago after going for a routine eye examination .since then i have been going to the local eye hospital and my pressures have risen from 19 to 26 in my left eye and 23 in my right eye.5 days ago they put me on timoloi eye drops and im to take these for 2 months to see what happens! i have read about people with higher pressure than me and still not been put on eye drops so i think it must depend on your doctor.good luck hope this helps.
Diagnosed with Krukenberg's Spindle
Daphne, 54, Canada. Jan 26, 06 - 5:54 PM
I was diagnosed with KS over 5 years ago & although my Dr wanted me to have annual check-up's I did not take his advice until this week. I made an appointment to see him after I had my eyes tested for new glasses. My failure to heed his advise has shown a marked difference for the worse in the condition of my right eye. Field tests & laser appointment has been set up for mid February to determine the extent of the change & required treatment. For those of you who have been diagnosed with this condition, please ensure you have the annual check-up's as recommended by your Dr. Personal History: KS in right eye. White female borm in UK 1951, move to Canada in 1971. No history of KS in family. Have 2 brothers & 6 sisters & 2 children male (35) & female (33). Both children have been tested & do not have KS. I will keep you posted on the results of my upcoming tests.
- Tracy, 40, UK. Jan 26th, 2006 - 6:08 PM
Good advice, Daphne. Good luck in February!
In shock
Helen, 43, Wales. Feb 6, 06 - 10:02 PM
This site has already helped so much. I had a routine sight test in March 2005 which showed little change in my vision over the last two years. However in the last two weeks I've been waking with pain in my eyes particularly the left one and pain occasionally in both eyes through the day. I had seen an advertising campaign for the RNIB and so made an appointment to seen my optician today. I am so glad I did as she diagnosed krukenberg spindle and referred me to my GP to see a Specialist. I'm glad to read so many positive reports on the web site as it seems this is a condition that can be lived with and managed but am still real worried as I have so many people depending on me. Can I carry on driving ? kind regards
- Tracy, 40, UK. Feb 6th, 2006 - 10:23 PM
Hi Helen, Sorry to hear that you've been diagnosed with KS. It should be ok to carry on driving, but don't overdo things, try not to drive at night, and don't do any strenuous exercising. Also, try wearing sunglasses whilst driving during the day (unless it's too dark to warrent them). The specialist will be able to tell you whether you'll have to use eye drops and/or have laser treatment. Try to rest your eyes as much as possible - cut down on looking at a tv or computer screen for long lengths of time (sunglasses can help here, too). As you said, it's frightening when first told, but it is very definately something that is bearable, and to a certain extent, treatable. Good luck when you see the specialist, let us know how you get on. Best wishes, Tracy
Told to stop using eye drops during pregnancy
Tracy, 40, UK. Dec 4, 05 - 6:39 PM
Just found out that I'm 6 weeks pregnant. The doctor at the hospital has told me to stop taking the Latanoprost eye drops until I have finished breastfeeding. As the eye drops have been a god-send, I'm a little worried my IOP's will shoot up now that I'm no longer taking them. Has anyone else had to stop taking them because of pregnancy, and did your pressures increase?
- Tracy, 40, UK. Apr 4th, 2006 - 1:04 PM
Had an eye exam last week (30th March) and my IOP's were 15 in my left eye and 14 in the right (the one I had laser treatment on). Quite a relief! Am now into the 25th week of pregnancy, and baby is doing fine! :)
Newly diagnosed - my experience so far
Michael, 40, Taiwan. Apr 4, 06 - 5:22 PM
I'm American, so visiting a doctor has never been a routine thing for me due to the high expense of anything medical-related in the USA. The last time I had an exam, 3 years ago, everything was normal. I never experienced any eye problems other than floaters, which the doctors assured me was normal. I'm nearsighted, by the way. One of my passions is hiking. I've always hated "bouncy", high-impact sports like jogging or aerobics, preferring biking and hiking. I do like tennis, though. Here's my experience. I now live in Taiwan. In August of 2005 I went hiking on what was supposed to be a four-hour hike, and we ended up lost in the woods. We started becoming concerned about it getting dark, so we hurried along the path at an accelerated pace. Finally we made it to civilization, after about seven hours. But I suddenly noticed something strange: I began seeing a strange pinkish image in the center of my field of vision, shaped like a star or a spider or a crab when I looked at the featureless sky. I was also seeing a kaleidoscope of phosphenes. When I stopped to rest, the image disappeared. I decided to be careful - if this ever happened again, I would schedule a visit to the doctor (still thinking like an American - avoid doctor's visits only if something doesn't go away in time). For the next two months, nothing happened. Still went hiking weekly. But then there was another extended hike, poorly timed, in which we had to practically run back due to darkening skies. This time I noticed the same problem. But now, by the time we got back to the car, the star image (in both eyes) had changed into bright, shining yellow ovals, and I could only see out of my peripheral vision. I knew I had to see the doctor as soon as possible. When I visited the doctor, the puff test showed I had an IOP of 35 in each eye. An exam of my retinas and a field-of-vision test showed no damage so far. He said I might have to take eyedrops for the rest of my life to avoid glaucoma. This was 3 days before my birthday. Happy 40th! I was lucky to have this discovered in time. The doctor prescribed Timoptol, which a month later we found had lowered my IOP significantly, but not enough. Another exam, this time with a microscope lens placed directly on my eye, revealed I had PDS, a condition almost never seen in Taiwan, as it almost exclusively happens among white people. The doctor said I had almost no pigment left, and it was blocking my trabecular meshwork. He prescribed Trusopt, and later, Travatan, and told me about the option of surgery to open up a new drainage channel if the drugs didn't work. The combination of these drugs brought my IOP back to normal. But the Timoptol and Trusopt cause me to have headaches, which I counter with ibuprofen. After starting to use Travatan six weeks ago, I've been seeing halos around bright lights at night and car headlights (particularly those **** blue halogen lights) can be annoying at night. Fortunatley, Taiwan has a national health plan and my doctor's visits are amazingly cheap - consulting, exam and prescription total between US$8-14 each time. I will visit again at the end of April for a followup. I am concerned about moving back to the US eventually... This is how it is so far. I'm considering seeking another ophthalmologist for a second opinion, especially when it comes to the option of surgery. I haven't told my wife yet, because I wanted to get all the facts before causing her worry. Computer screens? Computers are my life. I am a translator and computer programmer. I only work with flat-screen monitors, which are so much better for your eyes. I also insist on using incandescent lights sinve fluorescents have bothered me all my life.
Diagnosis
Elle, 55, Canada. Apr 4, 06 - 6:39 PM
Ty for your info .... I was wondering why I am suddenly "at risk" for glaucoma, when there is NO family history. I also have a VERY pronounced sensitivity to sunlight, so much so, that I have to walk around with my eyes half-closed. I was informed that this is also "normal" when one is afflicted. I make it a point to ALWAYS wear my shades whenever I'm outdoors on sunny days, although recently some low-life stole my RX glasses w/clips attached!!! Those of you who have the same problem, or even if not, should always wear shades in sunlight as well, I was told by my optometrist to do so without fail.I'll keep reading posts & hopefully will see more responses re: sunlight issue. Thank You
Xalatan = Red Eyes?
Greg, 28, South Africa. May 3, 06 - 12:51 PM
Xalatan works fantastically in reducing my IOPs, bringing them down to between 12 - 14. However, I have a strong allergic reaction to the drops, with my eyes getting progressively redder during the day. By evening time they are very red. Other Xalatan users, is this your experience with the drops? If so, do you accept that, or do you use other drops to minimise the redness? I think the drops do a great job in dropping the IOP, but cosmetically, the red eyes affect my self-confidence quite a lot, and my doc has put me on Cosopt, a Timolol-Dorzolamide combo drop. Greg
- Tracy, 40, England. May 3rd, 2006 - 3:57 PM
Hi Greg Sorry to hear about the reaction Xalatan causes on your eyes. Whilst I was taking Xalatan I found that occasionally they would feel scratchy and turn red when I put the drops in (this would mostly happen when I was tired or had been over using my eyes). But I took the drops just before I went to bed, and by morning they'd be ok again. Do you take the drops at bedtime, or first thing in the morning? I agree with you, they worked a treat on the IOPs! Good luck with the Cosopt drops. Best wishes, Tracy
- Greg, 28, South Africa. May 4th, 2006 - 7:29 AM
Thanks for the speedy reply. And thanks for this website/message board. It's good to know I share this challenge with others. I was using the Xalatan last thing before bedtime, and found my eyes to be scratchy most of the day. I'd love to get back to teaching, as opposed to my current job, where I'm in front of the PC eight hours/day. I think that has a lot to do with my eyes being tired. Any recommendations for relaxing and soothing tired eyes? Greg
- Tracy, 40, England. May 5th, 2006 - 1:19 AM
You could try wearing sunglasses while using the comp, and try to get a filter on the screen if you haven't already. See if you can adjust the brightness of the screen, also, and take frequent breaks if poss. Medication-wise, I can't suggest anything... perhaps someone else can give Greg some suggestions? Best wishes, Greg. Tracy
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