Archived Messages
Due to lack of space on the Message Board Forum, some of the older messages have been archived here: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.
Keratoconus & PDS
Kim P, 41, USA. Jun 8, 05 - 9:34 PM
Hello all. I was just wondering if anyone else has been diagnosed with both PDS & Keratoconus. I have been aware of the PDS since 1983 and was just recently diagnosed with Keratoconus. I know they may not be related in anyway, just thought it was odd to have both. Thanks
Symptoms
Missy, 38, USA. Jun 8, 05 - 10:26 PM
I was recently diagnosed with PDA, it was an accident that I even found this out. I had gotten something in my eye and had made an appointment with the opthomoligist he in turn discovered that I had PDA. I am to return to him in a few weeks for a series of tests. I had never heard of this syndrome before. I have did many searches and everything was greek to me with all of the medical terms they used. I am so glad I found this site. Reading all the postings it has made me realize the symptoms people have mentioned here are symptoms I have been having for a while I just thought it was from my lasik surgery I had 5 years ago. The light sensitivity, lighting in stores, driving at night, pain in the eye I cannot go out into the daylight either cloudy or sunny without my sunglasses on. People always ask me why I am wearing sunglasses when the sun is not out. I always told them I was very sensitive to the light because of the lasik surgery I had. Thanks for the info. M
Just found out......
Alison, 35, England. Apr 28, 05 - 6:50 PM
Have just found out that I have PDS, and as much as the experts tell you not to worry, you can't help it can you? I mean, glaucoma is a one of those things that you think is going to wreck your life. And are they serious when they say there is only a 1 in 10 chance of me getting it? What were my chances before PDS? So I came home, went onto google and entered the first site listed. Thankyou Tracy, and all of you who have posted, for putting my mind at rest. I think this site is going to be a big help to me, so if I can think of anything relevant, I will post it.
- Shelley, 36, UK. Jun 22nd, 2005 - 1:57 PM
I have got PDS too. However I have a history of eye problems since I got trauma to my eyes after an explosion in Kosovo. I have had Bilateral Anterior Uveitis and Bilateral Iridocyclitis, I also had High Ocular Pressure. Generally I am of Good Health, so am wondering if PDS could be linked to the Previous Trauma. Can anyone help me.
Photo's, and new member of the "club"
Joe Jansen, 34, USA. Jul 17, 05 - 4:15 AM
Does anyone know where I can find some pictures online showing the differences between normal eyes and eyes with PDS? Is there anything that can be seen with the "naked eye", using a mirror, for example? What is the long term effects of PDS? Will all the coloration eventually flake away? what is left behind? Will my sensitivity to light get worse? I guess I may have to wait for the follow-up exam. I was just diagnosed this afternoon, so there are about a million questions running through my head. Thanks for this site! The first few I found were SO dry and difficult to read. This was much better, and I will continue reading around on it. --Joe Jansen
Pigment Dispersion Syndrome
Sarah Matters, 47, USA. Jul 21, 05 - 7:06 PM
At my annual eye exam this morning I was told about this syndrome being present in my eyes (particularly the right eye) and have now been referred to see an opthalmologist so that the pressures can be monitored. I have worn contact lenses for 30 years, although now wear only glasses. I have been short-sighted since I was 9. The optometrist told me there was nothing to worry about too much, but that she wanted me to see an opthalmologist who would be able to monitor the pressure every 6 months and keep an eye on things. So I am trying not to worry about it for the time being. My appointment is on August 30, and I'll let you know the outcome. Thanks for this website, you certainly made it a lot clearer than the other ones I was looking at which were far too medical linguistically.
PDS
Christine Whittaker, 55, England. Aug 8, 05 - 12:06 AM
AFTER BEING DIAGNOSED WITH PIGMENT DISPERSION SYNDROME AT THE START OF THE YEAR I HAVE BEEN TO THE EYE HOSPITAL TWICE, UNTIL THEN I HAD NEVER HEARD OF PDS BUT WAS TOLD IT CAN BE THE ONSET OF GLUACOMA WHICH REALLY WORRIED ME, SINCE THEN I HAVE READ QUITE A BIT ABOUT IT,SOME SITES DESCRIBE IT IN MEDICAL TERMS AND THE LENTGH OF THE WORDS ALONE ARE ENOUGH TO FRIGHTEN ANYONE. I HAVE FOUND THIS SITE MOST USEFUL AS I CAN READ WHAT OTHER PEOPLE WITH PDS THINK AS WELL, UP TO NOW I HAVE NOT GOT DROPS OR HAD ANY TREATMENT, I GO BACK AGAIN IN OCTOBER FOR PRESSURE TESTS AND ANOTHER FIELD TEST. SINCE IV BEEN TO THE HOSPITAL HOWEVER I HAVE SUDDENLY DEVOLOPED A VERY WATERY EYE, IN FACT IT IS STREAMING ALL THE TIME, CAN ANYO9NE TELL ME IF THEY HAVE THIS AS WELL? I WILL POST THE RESULTS OF MY NEXT VISIT TO THE HOSPITAL IN OCTOBER.
Optician's thoughts on Krukenberg Spindles
Pam. Apr 21, 05 - 6:40 PM
I applaud this website! Good Job. I too was diagnosed with Krukenberg Spindles about 6 years ago. It is truly amazing how many doctors don't look for it. I worked for an ophthalmologist for 5 years. During my exams he never mentioned anything unusual. It wasn't until I changed jobs that my condition was caught. I can not stress enough the importance of getting your eyes checked EVERY six months. These checks should include a dilation and visual field test. Every year you should be getting an additional exam called a gonioscopy. The damage caused by PDS is not from the free floating pigment. It is caused when the pigment clogs up the filter in your inner eye and causes your pressure to spike. Watch your pressures, take your meds and get checked. If you let it go and your pressure spikes, damage to your retina is irreversable!!
- Dr S, 34, USA. May 29th, 2005 - 4:20 AM
Just a side note . . . having Krukenberg Spindles does NOT necessarily mean you will have glaucoma, but most certainly you should be checked on a regular basis. Gonioscopy should be done to look at the "angle," or the drain referred to. The pigment can cause the "drain" to clog up, just like leaves in a storm drain, causing the pressure to spike and cause, yes, irreversible damage. HOWEVER, I've seen many patients with a KS and normal pressures and no glaucoma.
- Emma, 32, UK. Aug 8th, 2005 - 2:46 PM
I was diognosed with PDS in December. It was picked up by my optician after a visual field test. I was refered to a consultant, who diognosed the PDS. My eye pressure is normal at the moment. The consultant simply stated that all I need to do at this stage is get my eye pressure checked every year, and when it goes above 21 I should go back to him. I actually now have an eye test done at the opticians every 4 months to get my pressure checked, but people on this site have mentioned other tests. What are these tests and how do I ensure I get them done? Who does them? Do I need to go back to my GP and ask about these tests? My GP does not seem to know anything about the condition. Any info would be brilliant. Also Lutein supplements - what are these?
- Dr S, 34, USA. Aug 9th, 2005 - 5:05 AM
Your GP most likely won't know about Krukenberg Spindle nor will (s)he have the necessary equipment to perform the additional tests. As I previously stated, you should have a test called gonioscopy done to make sure the angle (or drainage point) of the eye is open, or patent. If pressure readings are high, your doctor should also peroform pachymetry, which is an ultrasound to determine the thickness of the cornea, since the measured pressure is a correlation of the rigidity and thickness of the cornea. If the optic nerve looks suspicious (your Dr will know what that means), they should also take baseline optic disk photographs. If your doctor isn't familiar with these tests, time to get a new doc.
- Emma, 32, UK. Aug 9th, 2005 - 9:20 AM
In the UK does the treatment differ from one NHS Trust to another? No one has offered me any of these tests. How do I ensure I am put forward for these tests? Is it by referral by my GP? Do I need to go back to my GP, and ask to be refered to the consultant? Do I then need to ask the consultant to arrange for these tests to be carried out? The consultant did state he did not want to see me until my eye pressure had increased. Can my GP arrange for these tests to be carried out without seeing the consultant?
- Dr S, 34, USA. Aug 9th, 2005 - 8:17 PM
Any good eye doctor will be familiar with gonioscopy as well as be able to perform it. Same holds true of pachymetry. If pressures are high or the optic nerves look suspicious, the doc may also perform threshold visual fields, GDx (or other retinal nerve fiber layer analysis), etc. If everything else looks good the doc may decide to just wait and recheck pressure periodically. The presence (or absence) of a Krukenberg Spindle is just a small part of a much larger picture. Don't loose sight of the forest for one tree.
Newly Diagnosed Loved One
Susan, 37, USA. Aug 25, 05 - 9:11 AM
Initial diagnosis of my boyfriend, August 24'05. Initial acute symptoms, blurred vision right eye. Within 3 hours light sensitivity and dialated pupil, fixed. Low myopic and otherwise healthy male. Normal iop's in past. Last eye exam 1.5 yrs ago. Slight decrease in distance vision but otherwise stable. Professional auto tech requiring laborious work efforts including heavy lifting, frequent ups and downs along with 12 hour shifts. Left eye normal with 17 IOP. Right eye elevated to 54 upon first evaluation. Reduced to 47 in 30 minutes of being dropped. (eye drops) Sent from OD to yet another wonderful MD who diagnosed "textbook" case of PDS. IOP returned to normal upon drops within 3 hours. Pressures managed at present with topical drops. Laser surgery, peripheral iridotomy to reduce iris bowing scheduled in 1 week. Alternate procedure available combined with continued medical tx and eye health check ups on increased basis if first procedure unsuccessful. MD promises no gtd's with PI procedure. Promoted as minimally successful in most rather than greatly successful in many. Left eye is only a suspect and will be monitored closely for possible symptoms. Appreciating the quality of medical professionals who graciously and promptly treated his alarming symptoms. I hesistate to guess what his possible path may have been pressures check had been overlooked. He was originally advised to go to the ER where I am not sure the treatment would have been as specialized for such occular events as well as precious lost hours. This is not to berate the skills of ER Dr's. In this situation however, without pressure checks his symptoms could have suggested alternate ocular situations thus possibly skirting the appropriate and vital pressure treatment necessary. As an optician for a local OD my experience with this type of ocular sydrome is limited obviously well beyond my knowledge level. The education from his Dr's was priceless as well as termed in ways we could understand. Thanking my God for wonderful professionals who saved the day for my beloved! Susan
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