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.
Tracy's Message Board Forum
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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| Author | Comment |
Mercy
 IP: 142.177.176.97 Aug 26, 07 - 3:31 AM |
Son - 22 years old - just diagnosed
First of all this site is such an answer to prayer for me as I just need to post some concerns/questions. My son has just been diagnosed with this syndrome a few days ago. He also suffered a closed skull injury 2 years ago and was in an induced coma for some time while his inter cranial (spelling/term) was monitored. Would this have caused or contributed to this syndrome? My son has always had perfect 20/20 vision until 4 months ago when he got a very mild perscription for myopia. This is when the Eye Dr. noted the pigments, etc. and referred him to an Opthamologist. The Opthamolist stressed the need to be "watched" but said a year would be fine. He said his pressure was very good and his optic nerve was very healthy. When I made the appointment however, the Dr. was so booked that it ended up being 17 moonths. Should I be concerned and should I try and have him seen elsewhere? We live in Nova Scotia - Canada and there is such a waiting list everywhere. I have a history of detached retina in my family as well. I had one at 10 years old and my daughter at 17 years old. My son's retina was good at this last exam. Are males more prone to have the pigmentation syndrome and females - the detached retina?? Any info or help would be most welcome and again I thank you for taking the time to answer my questions. Also, are there any vitamins or holistic treatments available for this syndrome? Mercy |
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Dave
IP: 193.62.251.16 Aug 29th, 2007 - 2:38 PM |
Re: Son - 22 years old - just diagnosed
Hi there, My thoughts (in some semblance of order) Closed head injury is not likely to have given your son Pigment Dispersion Syndrome (PDS). Although, like may conditions, PDS is likely to be brought on by a combination of genetic and environmental factors the vast majority is gene related. Thus, chances are, your son has always had it & it is only now it has reached a point where it could be detected. Head injury should be avoided (in everyone but especially) in people with PDS due to liberation of pigment & higher prevalence of lattice degeneration, a risk factor for retinal detachment. This is especially relevant in your case. The only person who can make a judgment on how long to leave between appointments is your ophthalmologist or optometrist. If he isn't worried by 17 months I don't think you should either. He knows your sons eyes best and he (and I'm pretty sure this is the case in Canada) has a legal responsibility to set appropriate recall dates. Thus it is in his best interests to get it right. There is no gender difference in prevalence of having PDS. Males are more likely to get Pigmentary Glaucoma (damage to the eye as result of PDS) than females. It has been suggested that a protective effect from female hormones accounts for the difference. There is no gender difference regarding retinal detachment except in a few genetic syndromes which tip things one way or the other, i.e. Stickler's Syndrome. I have never seen any evidence that anything (conventional or alternative) can influence the course of PDS. Anti-glaucoma treatment, be it eye drops or surgery has an excellent evidence base regarding it's efficacy. There is slight, speculative evidence that Gingko Biloba is protective in glaucoma. But it does have side effects (like everything which has an effect) so shouldn't be taken without consulting medical advice, and only when PDS has progressed to PG. Hope this helps. Dave |
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Dorothy Hannam
IP: 142.167.218.153 Sep 13th, 2007 - 9:58 PM |
Re: Son - 22 years old - just diagnosed
I live in the valley in Nova Scotia and was diagnosed 20 odd years ago. Because I was so young, my pressures were normal when I was told about the krukenberg spindles but within a year had elevated to the point where I have lost a small portion of my visual field in my left eye so I was immediately referred to the glaucoma clinic then located at the Halifax Infirmary and now located on the second floor of the Old Victoria General Hospital, which has been totally redone and has claimed most of the second floor of the Centennial Wing. They deal exclusively with these types of eye issues and I would push to be referred there given your son`s age and the need for careful monitoring. Here`s the good news once I was given the proper eye drops I have had no more vision loss and the pressure in my eyes has remained stable. I go every six months to have pressure checks and visual field testing done. Occasionally they take pictures of the back of my eye to monitor its condition. It`s always scary to have such a diagnosis but I have found it to be relatively easy to live with as long as I have my eye drops I`m fine. |
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