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Due to lack of space on the Message Board Forum, some of the older messages have been archived here: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

June 2006 - December 2006

October 2004 - May 2006

June 2005 - August 2005

January 2007 - February 2007

Sorry for the inconvenience.


Went in for eye pain...lots of questions

Beth, 28, USA. Feb 16, 07 - 5:45 PM

And came out with occular hypertension secondary to PDS, an Rx for Cosopt and glasses. Im only 28. Lovely. Reading my files from the DR my pressures were 32 and 28. There is also written down Krukenberg spindle in both eyes(does everyone with PDS have this?) Also I was reading on here that people either have myopia or hyperopia, According to the DRs paper he has circled both along with astigmatism. How common is that? Ive noticed that I must use my drops (I take them 2x a day) or the eye pain returns. Sometimes if I stand up too fast everything goes black for a few seconds, is that part of it all? and sometimes If I turn my head too quick to look at something I see flecks of light which I say is similar to seeing stars twinkle, Is that part ofit all? One more question (for now) My grandfather has glaucoma, with everything I have, how likely is it that I will too?? -BETH

  • Dave, UK. Feb 19th, 2007 - 2:03 PM

Hello there, I'm going to take a stab at your questions in order. Please feel free to post again if I haven't made myself clear or misunderstood your enquiry. Krukenberg Spindle (a pattern of pigment deposition on the back of the cornea) is the most prominent sign of PDS. As such, it is very common amoung people known to have PDS (up to 95%). However screening studies (looking at the general population for a specific condition suggests it's much more common (at least in Caucasian populations)than we used to believe but we're only finding those who have Krukenberg Spindle. Regarding your glasses prescription, are you asking whether mixed astigmatism (leading to both myopic (shortsighted) and hyperopic (longsighted) portions of a correction) is common or whether this is common in PDS patients? The former, not overly so maybe 10% of the population (this is just off the top of my head). The latter, more people with PDS are myopic than hyperopic but still as many third could be non myopic. The blacking out that occurs when you stand up doesn't sound like PDS. It sounds like it is related to a drop of blood pressure caused by your sudden movement. You should mention this to your ophthalmologist or optometrist so they can confirm the cause or rule out some more important ones. The twinkling you describe could be a number of things. Most likely due to a benign degeneration of the vitreous humour (the jelly that fills the back half of the eye). However if this is new, or changes, then you should have it checked by your optometrist/ophthalmologist. The final question is a bit trickier to answer. I'd need to know an awful lot more about your eyes and vision than I do. Also, some would say that you already have glaucoma, based on you are being treated for ocular hypertension. I wouldn't, not until there are definite optic nerve/visual field changes but these might not be clear so early in your diagnosis. Leaving aside semantics, theres a risk of conversion from PDS to Pigmentary Glaucoma (PG) of 10% after ten years, 15% after fifteen yrs. However conversion was based on start of medical therapy, which you have already started. So it's back to terminology. Sorry I can't be more helpful. Hope (some of) this helps.

  • Darlene, 57, USA. Feb 24th, 2007 - 10:43 PM

Hi Beth, I was diagnosed with PDS a couple of months ago. I have been having problems since last August and have been to mutiple eye doctors. Finally, I found a doctor that told me it was PDS. He took pictures and I can see where the pigment is all flaking off. I do have it in both eyes but my left one is worse. I had laser surgery two weeks ago on my left eye, but was told that it did not change the shape of my lens like he had hoped that it had. I am on eye drops now. I did go to the Cleveland Clinic and he agreed that I have PDS. I have no idea what causes it but the dr at Cleveland said that it has been going on since I was a little girl. When I was at Cleveland the pressure in my left eye was 36. The drops are timoptic drops and I use them in my left eye only. Last week I had a check up and the pressure was 18 in my left eye and 14 in the right. I was told that with this disease that I am at high risk for glucoma. I never did have eye pain. My vision is very blurry and I do see flashes when I look out to the sides of my eyes when it is dark. From what I understand the lens of the eye is shaped so that it rubs against the iris and causes it to rub off. This is very frustrating. Like I said, I have been to doctor after doctor. I am still wanting more information.


Pigment dispersion

Kim, 37, USA. Feb 23, 05 - 9:59 AM

Hello. Just wanted to thank you for the web site. I am searching for information on this disease. I was told I have pigment dispersion but the dr. didn't necessarily say it was a syndrome or glaucoma. My pressures are low but I have cup? changes and areas of translumination. The Dr. recommends laser iridotomy and states it will basically fix the problem and I will most likely have no furhter problems. He is a very good Dr.but I don't think a second opinion would hurt. Any body have any info on this? Thanks

  • Cari, 24, USA. Jul 27th, 2006 - 8:47 PM

    I am also very thankful for this site. I was just diagnosed with pigment dispersion by my eye doctor, and he didn't tell me anything about it. When I tried asking him questions, he walked right out of the room and went in with another patient. He told me I should come back in a couple of years for another exam and to check my eye pressure. Looking on the internet, all the sites say to get checked 3 or 4 times a year. I called him and asked him about it, and he said not to worry, that I don't have glaucoma yet, and we'll worry about it when it gets to that point. I am going for a second opinion in about a week. It's kind of scary, and even more so when you don't know anything about this. That's why this site is so nice. At least I can understand in lamen's terms what I have.

  • Chris, 29, USA. Sep 19th, 2006 - 8:12 AM

I was diagnosed with pigment dispersion syndrome 2 or 3 years ago when I was in the Navy. The optometrist said it was something I probably have had all my life, but it was never caught until he found it. They had me on three different types of eye drops. I was in about about every 2 or 3 months to monitor my eye pressure and changed eyedrops around as he felt was needed. He mentioned having the laser surgery to fix it, but I wasn't able to get it done before I left the Navy. He said that effectively what it does is it creates little tiny scars in the filter that collects all the pigmentation that has come free in your eyes. The scars will cause the filter to open up and allow the trapped pigmentation to go away, therefore allowing free flow of the liquid through your eyes with nothing to raise the pressure, therefore nothing to possibly cause complications with glaucoma later on down the road. He was also kind enough to inform me that I had a textbook case of pigment dispersion syndrome and that the coloring was the blackest he had ever seen in all the cases he has come across.

  • Darlene, 57, USA. Feb 25th, 2007 - 12:12 AM

    Kim, I was diagnosed with PDS about 4 months ago. I was referred to a glucoma specialist and he recommended laser surgery which I had done in my left eye. There was not much to it. No pain at all. From what I understand, the laser put a hole in the iris and should change the shape of the lens of your eye so that the rubbing will quit shedding the color of the iris. He said that the shape of my lens did not change as much as he had hoped for but we would check in 3 months to see if it helped. If so, he wants me to have laser in the right eye. It is not as bad as the left. I am now on timoptic drops and my pressure is 18 in my left eye and 14 in the right eye. I only use the drop once a day in my left eye.


Laser surgery for scar tissue

Robin, 45, USA. Feb 9, 07 - 6:09 AM

I had yag surgery in jan. to remove scar tissue in the right eye..know I don't see as well...I have starburst effect with car light's, light post..I have a shadowing effect when looking at traffic signs,store signs and traveling behind a car, the back lights of the car expand out from the car..this scares me ... i postponed having the left eye done..this is only at night that I notice these changes..is this change related to my PDS or is something else going on...can anyone relate?

  • Ken Jeffers, 38, USA. Feb 9th, 2007 - 8:39 AM

Hi Robin, I'm an optometrist and I think I can help you with determining your problem, although it can't be confirmed without and eye examination and some testing. The most important information I needed was not addressed in your thread. Tell me your ocular history, and what the laser was used to treat. I can not think of a procedure related to pigment dispersion sydrome that would need laser to "remove scar tissue". Lasers are used in a multitude of ways in eyecare. Can you elaborate? Thank you, Ken Jeffers, O.D. P.S. I work in an ophthalmology practice, so we do a lot of eye surgery and laser procedures. Hope I can help.

  • Robin, 45, USA. Feb 26th, 2007 - 12:42 AM

the scar tissue was from recent catarac surgery... I can't understand the reason for not seeing so well after this was done..I had a eye vision test done last week and my eye doctor seems to think it's from the monovision lens implants that are effecting my vision and not the PDS...One implant was for seeing distance and the other upclose....

  • Robin, 45, USA. Feb 26th, 2007 - 1:05 PM

Ken, the laser surgery was for scar tissue removal from recent catarac surgery...I'm having more trouble seeing after this procedure was done..I went to my eye doctor for a vision screening test and he seems to think that it's the monovision lens implants that are effecting my vision and not PSD..I had 1 implant for near sight and the other for farsight...


Krukenberg's

Martha, 59, Canada. Mar 1, 07 - 3:19 AM

Every year for the past 4 years at least, an eye exam has noticed Kruckenberg's spindle. Today my doc took special care to examine with a bright light then asked me if anything had changed for me during the last year. On Jan 6 2006 I withdrew, cold turkey, after 10 years, from benzodiazepines. It was a dreadful, traumatic experience and this was the first positive effect...


Exercising with PDS

Kathy, 42, USA. Mar 17, 07 - 8:14 PM

I HAVE BEEN DIAG. FOR 1 MONTH. I WANTED TO JOG FOR 1 MINUET THEN WALK AND SO ON WHILE WALKING MY BOEDER COLLIE DOGS. I RECENTLY READ THAT JOGGING OR BOUNCING IS NOT IS NOT RECOMMENDED FOR PEOPLE WITH THIS SYNDROM. SO, I WAS WONDERING IF I COULD JOG ON A SMALL TRAMPOLINE TO AVOID THE BAD AFFECT FROM HIGH IMPACT JOGGING/WALKING. PLEASE REPLY.

  • Tracy, 41, England. Mar 18th, 2007 - 11:04 AM

Hi Kathy, Jogging on a trampoline hadn't occurred to me, but I think you may be on to a winner! What do others think?

  • Dave, UK. Mar 19th, 2007 - 12:08 PM
  • I think its important to remember three things when talking about exercise and PDS. Firstly you can find iris changes in both normal people and people with PDS after cycling, which is an exercise has no impact, and iris changes do not happen in the majority of people when they exercise. Finally, no-one has demonstrated a worse visual outcome for people with PDS who indulge in exercise. Exercise has a huge positive effect for the rest of the body, far outweighing the increased risk of injury to joints, ligaments, tendons and muscle which it brings. I might be just to trying to justify why I will continue to run half marathons but I think the risk of worsening your PDS through exercise has been overstated and I think you'd be fine jogging with your dogs or using the trampoline. In fact do both!


Article re: Pigment Dispersion Syndrome

Tracy, 41, UK. Mar 21, 07 - 9:19 AM

I found this article recently: http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=8981706 It's published from the Department of Ophthalmology, New York Eye and Ear Infirmary, New York, USA. It's lengthy, but it's the result of "...recent findings regarding pigment dispersion syndrome in order to arrive at a hypothesis concerning the nature of an underlying genetic predisposition." Have only had time to glance through, but it appears that their conclusion is: "A gene affecting some aspect of the development of the middle third of the eye early in the third trimester appears at the present time to be the most likely cause."

  • Dave, UK. Mar 21st, 2007 - 11:54 AM

Hi Tracey, Robert Ritch is a true expert on PDS and PG. He's the head of the Glaucoma Service at New York Eye and Ear Infirmary. Good guy, if a little brusque. This paper is a little old now but the basic idea still holds. Certainly the research since then has supported this view. The difficulty comes in that there are things associated with PDS which aren't easily explained by a single gene or time of onset. The increased incidence of lattice degeneration and cardiovascular problems are two such correlations. Although there are theories for both these links, it does complicate matters somewhat. More recently, Ritch has published a case series of PDS being found in three children under the age of 13. This is a timely reminder that family members of PDS patients should be examined for this condition. Dave

  • Tracy, 41, UK. Mar 22nd, 2007 - 8:52 AM

Thanks Dave, Much appreciated. And thank you again for your advice on the site.


New diagnosis questions about contacts and age

Ashlei, 25, USA. Jul 12, 06 - 2:48 AM

This website has been great the doctor alternated between scaring me to death and telling me everything was fine. but if anybody could help ive got a question. does anybody else have problems wearing contacts? I used to wear them with no problem but now they kill me after about three hours. also a lot of the people on this website seem to be in their 40's is 24 early to be diagnosed. My doctor noticed the PDS at my exam last year, but he says I have a while to go before eye drops. My eye pressure is at about 24 right now up 2 from last year. thanks again

  • Louise Saunders, 33, UK. Jul 28th, 2006 - 6:08 PM

Hi there, I too used to be able to wear contact lenses in my teens and early 20's, now I can't wear lenses for more than about 20 minutes! When I tried to wear them, it feels like the lens moves everytime I blink and my eyelids feel heavy and clogged. I wanted to wear contact lenses when I got married last year - tried many different types of CL, but gave up in the end. This was around the same time I was diagnosed with PDS.

  • David, 24, UK. Sep 6th, 2006 - 2:27 PM

I am an Optometrist who has PDS. Although I'm not a fan of everything on this website (some of the information has no evidence begind it) but I think, in general, more information about health matters is better than less. There were I think two questions: Is 24 young to be diagnosed? Yes but not by a huge amount. The average age is around 40 but the range (i.e. the oldest and youngest) is very wide. For example, it had been reported in children as young as nine. Women tend to be diagnosed with PDS about ten yrs older than men. Can my contact lens wear be effected by PDS? Very, very unlikely. PDS is disorder of the iris and lens. These are situated in the middle the eye. The cornea is at the very front of the eye. The Krukenberg Spindle is pigement deposited on the back of the cornea. Although the back of the cornea is very important to maintain normal healthy cornea, and therefore has to work harder in contact lens wear, there is no evidence that pigement sitting on the back of the cornea harms the cornea. Contact lenses rest on the front of the cornea and therefore do not affect PDS at all. The symptoms you have are more likely to be dry-eye or bog standard contact lens intolerance than something PDS related. I suggest you consult your contact lens practioner who will probably attempt to alter the lens type or wearing schedule that you are on. Hope this helps Dave

  • Jackie Johnson, 38, UK. Oct 22nd, 2006 - 1:29 AM

i have worn contact lenses for 16 yrs and only this yr have i had problems with them same thing my optician said unrelated to pds diagnosed 3 weeks ago was being treated for hay fever... i have to go too opticians every 3 months and hospital every 4 but just had a regular sight test today and have to go back to hospital next week as pressure up in right eye comfort eye drops do help not much but a bit better

  • Ashley Lewis, 31, USA. Apr 10th, 2007 - 2:34 PM

I was diagnosed at the same age. I am now 31 and still wear my contacts. Although they are not as comfortable as they use to be; I can make it about 6 hours or so. My pressures are in the 20's as well and I do take drops. I have PDSG; but have been able to keep it under control for the time being. It's a very scary thing to be so young. But as long as you keep up with your visits; all schould be well. Best of luck. Feel free to contact me if you need someone to talk to. ASHLEY


 

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