Welcome to the message board forum for Krukenbergs Spindle and Pigment Dispersion Syndrome.
Here you will be able to post messages or reply to messages posted by other people... share your experiences of PDS or Krukenbergs.
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Welcome to the message board forum for Krukenbergs Spindle and Pigment Dispersion Syndrome. Here you will be able to post messages or reply to messages posted by other people... share your experiences of PDS or Krukenbergs. |
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| Viewing Page 1 of 1 (Total Posts: 10) |
| Author | Comment |
Mary Willingham
 IP: 70.58.214.102 Aug 3, 07 - 11:48 PM |
Discovery of K.S.
Hi, I'm new to this forum but I have a question. When was this condition first discovered? I think I was diagnosed in the mid '70's with this, and at that time I remember my sister told me that my mom had said I'd go blind from this condition. I ask each different eye doctor that I'm examined by it I do have it and they always say yes. Is this genetic in some way? I've been severly near-sighted most of my life, and suffered from terrible migraines as well. The pain usually settles above one of my eyes, like right in line with my eye-brow. The pressure is intense, as if my eye were almost being pushed down on and out of my head. Is this common with some people, or considered unusual and a different issue all together? I have been told my eye pressure is slightly higher than normal, but can't afford to pay to have a specialist check on it. Anyway, thanks for the forum it feels good that I know I'm not alone. I was led to believe that this was a rare condition. Mary  
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Stephanie
IP: 24.113.76.226 Aug 6th, 2007 - 2:22 PM |
Re: Discovery of K.S.
Mary, I have the same kind of migraines that you were talking about... I'm not sure, but I have either K.S. or Pigmentary dispersion syndrome, at least that's what my last eye doctor told me (I really tried hard to remember the name but when I left the office, I'd forgotten the name and didn't know if it lead to glaucoma or cataracts??? Why do doctors have to make such long names for things anyway?), he went on to explain it to me and then I went home and looked it up and I have to wonder if my migraines could sometimes be caused by this. My eyes are really sensitive to light (I should also mention that my pupils are abnormally large, many doctors have commented on the fact that the dilating eyedrops were not necessary)and, if I'm understanding this correctly (and I could be wrong), something is brushing against something in my eye when my iris dilates & contracts and something is breaking off because of this. That sounds painful just hearing it, but my doctor did assure me that I wouldn't be feeling it, but is that true? How much research has gone into this to make them know for sure that it is painless? I find it interesting that I get migraines every time I'm in the sun (mostly when the sun is playing peekaboo behind trees and such), which causes my iris to contract and dilate frequently, which would mean more brushing and breaking off of, than the average. So does that cause me to have my migraines? I'm probably wrong, I'm not a doctor obviously, but I would like to know why my head hurts so bad all the time. |
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Mary Willingham
IP: 71.38.19.205 Aug 6th, 2007 - 6:22 PM |
Re: Discovery of K.S.
Wow Stephanie, I'm sorry you have the same problems I do I would not wish this pain on anyone. I too am light-sensetive, and bright lights will bring on a headache. I also don't like to watch anything on the tv when the screen flashes with colors or pictures. I usually look in the other direction or close my eyes and turn my head. I don't know about the pain, I have been able to wear contacts for a long time now, but my eyes do seem to dry out often. Most doctors, (from what I've experienced) don't like to admit that people have migraines. I'm usually told I have sinus infections.... one even told me that he could not help me any more, and I had been going to see him for 15 years. Ask your regular doctor about the pain and your eyes, they might be connected. Take it easy, and have a "good" day.... meaning no headaches today.
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Dave
IP: 193.62.251.16 Aug 7th, 2007 - 12:15 PM |
Re: Discovery of K.S.
Ok, a lot of questions but first, I'm sorry to hear that you're struggling with migraine type symptoms. I'll try to answer these questions as well but you might be better off looking at a migraine web forum for specialist advice. On a side note (and a political one at that) I can't imagine living in a society where wealth is such a large barrier to receiving healthcare. I simply couldn't do it. Anyways: Pigment Dispersion Syndrome (PDS)type ocular changes were first noted by Krukenberg (i.e. the Spindle) in 1899. Von Hippel in 1901 suggested that these could cause raised pressure. It wasn't until the 1950s that Pigmentary Glaucoma (PG) was described (with pigment sitting on the the trabecular meshwork (drainage angle of the eye)) and iris defects were found. This is the diagnosis was properly defined. PDS has a strong genetic component but the exact nature is still unknown and a genetic test is far away. In the meantime it is sensible advice for first degree relatives to be examined (but then it's sensible advice for everyone to have eye exams). PDS is more common in short-sighted (myopic people) but people with any prescription (or none can be effected). PDS does not cause migraine. The location of these two disorders is so far separated (both physically and physiologically) that it can be ruled out. It is possible, although very unlikely that the pain around your eye could be related to the Intra-Ocular Pressure (IOP) but this does not occur often in PDS or PG. One of the signs of PDS (in fact the most obvious one) is Krukenberg Spindles. These are deposits of iris pigment that land on the back surface (epithelium) of the cornea (clear window at the front of the eye). This occurs because pigment cells from the iris are brushed off by the lens zonules (fibres that hold the lens in place). This is not painful as neither of these structures have nerve connections. It should also be noted that this occurs with pupil movement, accommodation (focusing on close objects and blinking). If have discussed migraines in a previous post (as well as most of these questions) but for completeness, migraines occur when there is an electrical disturbance in the brain (normally at the back, where vision is processed). This electrical depression spreads forward until it meets the large cerebral arteries which go into spasm. This is what causes the pain and nausea. Some people notice visual disturbances before the headache, this is due to the electrical activity effecting brain function as it moves. Many people note "triggers" for this abnormal brain activity such as flickering lights or certain foods but this very variable and personal. Hope this helps. |
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jo
IP: 90.241.49.74 Aug 7th, 2007 - 1:43 PM |
Re: Discovery of K.S.
Hi Mary and Stephanie, Sorry to hear, or should I say ( see,) about your problems, I suffer from what you are going through, big time. All the answers Dave, has posted me, 'tell it like it is'. Listen to this man he knows his stuff, and is first class in his field of work, by just reading his answers,AND he bothers to explain it well shows this. Bright lights, flashes on the tv,eye pain, are all part of K.S.D. Keep smiling at least we can still see! jo 
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Dave
IP: 193.62.251.16 Aug 7th, 2007 - 3:07 PM |
Re: Discovery of K.S.
Thanks Jo, your money's in the post... I don't think that anyone would describe me as first class in this field of work. I just read the stuff by people who are and am mouthy enough to post it on here. Glad it helps and hope it continues to. |
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Mary Willingham
IP: 65.101.81.13 Aug 7th, 2007 - 5:26 PM |
Re: Discovery of K.S.
Thanks Dave, you were a great help. Your answers were the best I've yet to get. Not once was it explained to me that the migraine moves up from the back of my head to my eyes. That explaines quite alot for me. I'm not sure if anyone in my family has this condition, as far as I know I'm the only *lucky* person so far. Thanks again, Mary |
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Dave
IP: 193.62.251.16 Aug 8th, 2007 - 10:12 AM |
Re: Discovery of K.S.
I might not have made myself clear. Your migraine doesn't reach your eyes. It effects the visual part of your brain. This is what leads to the visual symptoms (aura, zig zags etc). The easiest way to demonstrate this is to notice that the disturbance is identical in both eyes which can only happen if it stems from the middle of the brain backwards. Hope you still found the answers useful... |
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Stephanie
IP: 64.113.213.179 Aug 9th, 2007 - 10:21 AM |
Re: Discovery of K.S.
Wow! I'm impressed with your answer Dave, maybe being able to see it in writing helps also. I'm now wondering if you are a doctor and if yes, can you be mine!? It's so hard to find a good doctor these days that's willing to take the time to explain things in the average person's language. The whole health system seems to be screwed up... I could go on but this is not the "I hate our health system forum" so, I'll just say thanks again for your reply. Yours too Mary! It's nice to have someone to sympathize with. |
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Dave
IP: 193.62.251.16 Aug 9th, 2007 - 12:15 PM |
Re: Discovery of K.S.
Thanks for the kind words. No I'm not a doctor (although my PhD is now in it's final stages, do maybe soon) but I am an optometrist (U.K. based and trained) and have PDS. So it might be a little far for you to travel! And yes, having it written down helps. When I used to work in the ocular oncology clinic we used to record the discussion we had with our patients and give them the tape because no-one remembers anything after hearing the word cancer. |
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