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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Due to lack of space on the Message Board Forum, some of the older messages have been archived here: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

September 2004 - May 2005

October 2006 - November 2006

June 2005 - August 2005

October 2004 - May 2006

January 2007 - February 2007

February 2007 - April 2007

Sorry for the inconvenience.


Spindles produce nighttime glare?

Jim Miller, 40, USA. May 20, 06 - 5:36 PM

Hello, I have been diagnosed with spindles, though not PDS yet. But I do have an enormous problem with grainy/fuzzy distortion of car headlights. My eyes have been thoroughly checked by several specialists and they could find no cause for this glare. They all remark on my spindles, however, but say that the pigment particles in the spindles are "optically neutral", meaning no effect on vision. I've grown to doubt this. Does anyone else reading this know of a relation between spindles and nighttime glare? Also, does anyone know of a spindle or PDS treatment which also removes the symptoms of glare? Do the doctors have a way of getting the pigmnet particles off of the rear side of the cornea? Thank you, Jim

  • Michael, 40, USA. May 20, 06 - 5:36 PM

I've had problems with headlight glare since soon after I began taking Travatan 3 months ago. Before that I had no problem. I'd like to know the same: what causes the glare? To me, the worst culprits are halogen headlamps (which I have always found to be blindingly bright, even pre-PDS). They're like little blue suns and I have to avert my eyes. There's also a kind of headlamp that has a small convex lens that focuses the beam - these torture my eyes too.

Amy Vanskike, 36, USA. Jun 10th, 2006 - 4:56 AM

I was diagnosed with KS in early January, but have had problems with sensitivity to light for years, including a severe sensitivity to headlights, streetlights, you name it, while driving at night. Due to the 'blinding' affect of the water/light combination, trying to drive at night while it's raining is an almost impossible task, not to mention, a terrifying one!! I have to wear glasses, that have a special glare-reduction coating on the lenses, while I'm driving in the dark & the second I walk outside during the day, I have to reach for my sunglasses. Not only do lights affect my ability to see, they'll also create unbearable headaches if I go just a few minutes without my glasses when needed. They don't eliminate the problem, I still struggle, squint, etc... but they do help to reduce it a bit. Like I said earlier, I've been dealing with this for years & my KS diagnoses came only six months ago, so am unaware if there's a direct connection between the two. What I do know however; is that my pupils do not react 'normally' to light. There is minimal to no retraction when hit by light & they are unusually dilated by nature. My family has always joked with me that I was born with absolutely BLACK eyes & that as a child they were so dark that I could stare a hole right through anyone... Up until just a few years ago I had very dark-brown eyes, but over time they've lightened-up quite a bit in color. My Doctor informed me back in January that in another 10 years or so, I'd be sporting a beautiful pair of GREEN eyes, which to me sounded absolutely crazy! How could anyone's eyes go from brown to green all on their own?! I know now that it's not only very possible, but is happening to me! The way we've been created, how intricate everything is & works is so amazing/intriguing to me, but I'll still be sad to see my brown eyes go! I've always been one of those rare 'true blondes' with brown eyes & I've never been one who likes to conform! :o ) Leave it to me to be diagnosed with something neither myself, nor anyone else in my life has ever heard of before... I don't know if this helps or not, but it appears as though light sensitivity, etc... seems to come along with KS. And in my case, came long before KS actually developed.


Misty vision

Mike, 41, UK. Jun 16, 06 - 8:30 PM

I have recently been diagnosed with PDS and reading through the postings on this site seem to have fulfilled all of the high risk elements at some time in my life...41, white, have heavilly used computers for nigh on 20 years and have done lots of vigourous exercise through sport for all my teenage and adult life. Before I went to see an optician the sight in my left eye was deteriorating (I am short sighted) and recently I would suddenly get "attacks" if misty vision in my left eye. This dimmed the image in comparison with my right eye and seemed to bleach some colour. However, the really irritating part was that I would see a halo around any bright light in that eye. I would often get a headache soon after this started but after a period of time the misty vision would go. The halo I rationalised was refraction of the light in my eye. When I went to the optician he could not get a consistant pressure reading and upon referral to Derbys DRI eye clinic I was diagnosed with PDS. Interestingly, when I was at the eye clinic I had drops in my eye to dilate the pupils and when my right eye had recovered, my left eye (the worst) was still dilated and the misty vision was there. It took another two hours or so to recover the vision fully in my left eye. Since starting on Travatan this misty vision has not happenned...early days yet though. Does anybody else experience this type of symptom? Other information that may be relevent is that I have not really suffered sensitivity to light and to my knowledge there is no history of glaucoma in my family, although myself, my father and my son are all asthmatics. Personally I have taken steroids for this since the age of 10 althugh not regularly.


Lasik & Krukenberg Spindle

Trish, 38, USA. May 12, 06 - 8:36 PM

Hello, I was diagnosed with Krukenberg Spindle over 7 years ago. So far no problems just concerned about the potential risks. My question is I now want to get the Lasik surgery and I wondering: 1) If anyone had any problems post Lasik surger 2) Because of Krukenberg Spindle, did anyone have to take PRK instead of Custom or Lasik? Just really trying to determine if Kruekenberg Spindle can effect my eye surgery. Thanks and I'm soooo glad this forum exists. I learned alot today more about my condition then my years of knowing I had it.

  • Cathy, USA. Jun 19th, 2006 - 9:02 PM

Hello Trish, I have had Krukenberg spindles for as long as I can remember. I had Lasik surgery January 2004. My distance vision is great, but now I need reading glasses! Seems once you have "normal" vision, you get to go throught the normal aging process! I am 44 now and do wear reading glasses. The only difference that my doctor has told me is that I need to have yearly eye exams and yearly pressure checks. I can't remember exactly why the pressure changes, but it does. I am glad I had my eyes done. Good luck to you! Cathy


Diagnosed Today

Nicole, 28, USA. Jun 30, 06 - 8:38 PM

I was diagnosed today with PDS. I went for a routine eye exam in order to renew my license. I have read several of the messages on the message board and I am terrified. My doctor told me that I had nothing to worry about, but that I needed to have once a year eye exams. I was okay with it until I got on this board and now I am worried. Your information helped me understand what was going on, but sometimes the less you know the better you are. After reading all of these stories, I will put my trust in the Lord.


Common denominator...

Jane, 45, UK. Nov 3, 06 - 2:48 PM

Tracy.. you mention a common denominator as being short-sightedness.. but I'm long sighted. I'm wondering how rare that might be?

  • Dave, UK. Nov 3rd, 2006 - 5:04 PM

Rarer than being short sighted (myopic) but not unheard of. In all the studies I know of, the majority the patients are myopic. But a third of the individuals mentioned have no need of glasses at distance (emmotropic) or long-sighted (hyperopic). Although a lot of text books say that those most at risk of pigment dispersion syndrome and conversion to pigmentary glaucoma are young myopic men, this does not seem to fit with the most modern research.

  • George, 40, Scotland. Nov 13th, 2006 - 6:51 PM

my vision is good , neither short or long , i have never worn glasses and can read to the bottom of the eye test board , when i asked the doc he said who knows with this condition , go figure.


Just diagnosed with Krukenberg's Spindel - 6 mos post op Lasik Surgery

Connie R, 38, Canada. Oct 15, 05 - 2:36 AM

Hi Everyone. Just wanted to let you know that I was at my Surgeon's office for my 6 mos post-op after having Lasik surgery. During the testing they realized that I have Krukenberg's Spindle. It did not show up on any previous test prior or post to surgery. I am taking part in a study that is following the healing process of Lasik patients and have been undergoing fairly extensive eye examines every 2 - 3 months. All testing is being charted etc... It was at the 6 mos test that the specialist noticed that I have a spindle on my left eye. They advised me that I will have to undergo annual followups from now on. I am very glad I found this board as it has alleviated alot of my fears, and provided alot of knowledge. I will keep you posted on the results of my further testing.

  • Janice Dunbar, 55, UK. Dec 28th, 2005 - 10:23 PM

hi there just found website v useful i had lasik surgery in july and now have suspected glaucoma but def krukenburgs spindle I also have to have repeated eye checks and the suggestion is that poss the surgery caused intense pressure on the optic nerve thus causing damage. I also will keep you informed

  • Janice Dunbar, 55, UK. Jan 1st, 2006 - 10:08 AM

hi connie hope all ok with you have they said wether they think lasik could have anything to do with the krukenburg i also have pigmet nt dispersion which also only appeared after lasik will keep sharing results happy new year

  • Connie R, 38, Canada. Jan 9th, 2006 - 5:13 AM

    Thank you for your replies. I went for a followup with my regular Optomotrist. When making my appt, I adv the Receptionist why I was wanting to see him (Krukenbergs) and she relayed this to my Doctor. He has see a few cases over the years so was familiar with Krukenbergs. Dr H gave me a thorough eye exam (including Glaucoma test) and assured me that at this time I am fine. we set up a schedule to monitor the condition and what I need to be aware of. Dr H. stated that I may have had the condition for awhile and the lasik only revealed Krukenbergs. He has a lady in his practice that he has been following for over 18 years and so far this is absolutely no change in her eyes from the day she was diagnosed. Makes me feel like I am in good hands.

    • Paula Preston, 51, USA. Nov 13th, 2006 - 5:35 AM

    Hello Connie, I stumbled across this forum while searching for info for Krukenberg's Spindel. 3 weeks ago I went for a normal eye checkup and a new cintact lens prescription when my eye Dr. discovered I have high interocular pressure and Krukenberg's . I am searching for info as I do not know much about them. I went back yesterday for a ocular pressure check and it is still 22 and 26. I had noticed about 6 months ago that the brown pigmentation in my eyes appeared to be gone around the outside of my iris. I am wondering if you have any of the same experiences. I also can feel like I have pressure in my eyes/headaches. Is it all a figmentation of my imagination or can I feel the pressure? What is the progression of the disease? My Dr. said my optic nerve looks like that of a teenager so that is good but what can we do to stop the pigmentation sloughing? I would welcome any comments from you and the other gal on the opsting also. I feel like I am not alone! But I am a little anxious. Thanks! Paula

  • Dave, UK. Nov 15th, 2006 - 3:26 PM

    Hi Paula, I'm not sure if the others still check this forum, it's been a while, but I'll throw what I know into the mix anyway. The fact that you notice a change in your iris colour seems to be commonly reported by people with pigment dispersion syndrome (PDS) but not to appear in the scientific literature. Certainly it's towards the edge of the iris where the pigment floats off to create the krukenberg 's spndle and foul up the trabecular meshwork (the drainage part of the eye which is required to keep pressure low). Although it is possible to feel high pressure inside your eye, it's unlikely you are at the level of intra-ocular pressure (IOP) that you mention (low to mid 20's). You really need IOP in excess of 40 for someone to feel anything and this would be pain (agony in fact) from tissue being damaged. Most likely it is something else. There's not an awful lot you can do to stop the pigment floating off your iris. It is often mentioned that people with PDS should avoid contact sports or running, and there is some evidence that these cause more pigment to be released. But there is no evidence that it improves your visual outcome. Chances are you do more good exercising than not overall. Ginkgo Biloba has been shown to have a protective effect on the optic nerve head (the site of damage in all glaucomas, including pigmentary glaucoma). Thus it is a useful thing to take. However you should check with your doctor (general practioner/family physician, whatever they may be) before taking this (or anything else) as it can have interactions with some heart medications. Above all, have regular follow ups and take whatever treatment your optometrist/ophthalmologist advises. Hope this helps. Dave


 

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