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• necessity of ERG post-diagnosis?
• Posted: 2008-03-16 12:52:32 By Kristy A
• Hi everyone,
  I'm trying to ascertain whether it's necessary for me to have an ERG regularly, as my doctors have recommended. I'd love to hear what you all have learned from your doctors.
  
  I'm in the early stages of RP and have seen two retinal specialists; both want me to have an ERG every year to two years. Is this necessary? I had one ERG when I was diagnosed with RP two years ago. The doctors recommend the tests be done regularly to be able to measure the progression of my RP. I simiply don't see the use, and I felt that I experienced a noticeable decrease in my vision after the test. any thoughts?
  Thanks,
  Kristy

• Re: necessity of ERG post-diagnosis?
• Posted: 2008-03-16 15:37:13 By Kim V
• Kristy,
  
  Not sure why you would need a regular ERG, I am now 22+ years into this and have only had an ERG at diagnosis, it is more important in my opinion to have the visual field test and the pictures to document the progress of your retina. And I have only had two sets of photos done. I think that sometimes the drs do too much CYOA and collecting insurance money. Unless there is some specific reason for you to have an ERG more often I would simply tell them no, especially if I felt my vision was affected by the test. I remember having trouble right after the test but not for any length of time. When it comes to my health care I guess I gather all the facts I can and make a decision for myself. I think there are far easier ways to test your vision than to have to put you through an ERG....
  
  Hope this helps...Kim

• Re: Re: necessity of ERG post-diagnosis?
• Posted: 2008-03-17 10:35:51 By Kristy A
• Thank you to both Kim and Darran. I am very happy to hear that this is not something that is standard protocol for RP!

• Re: Re: necessity of ERG post-diagnosis?
• Posted: 2008-03-17 10:36:10 By Kristy A
• Thank you to both Kim and Darran. I am very happy to hear that this is not something that is standard protocol for post-diagnosis evaluation.

• Re: Re: Re: necessity of ERG post-diagnosis?
• Posted: 2008-03-17 10:37:48 By Kristy A
• sorry for the double reply; I didn't think the first one went through!

• Re: necessity of ERG post-diagnosis?
• Posted: 2008-03-16 18:48:47 By Darran Z
• Kristy,
  
  I agree with Kim. I see no reason for this. I've only had it done once at diagnosis in 1981 and have never had it again. The purpose of the ERG is really for diagnositic purposes. Some "claim" to be seeing progression but that's what the visual field tests are for.
  
  If you know anything about me, I only play with the "big boys club." By this, I mean, my two ophthalmologists that I have seen are FFB researchers/clinicians. My first one who diagnosed me in 1981 is a very well respected clinician world-wide. I have moved and my current ophthalmologist is also affiliated with the FFB and has never requested an ERG done.
  
  I suggest you ask your doctor specific questions. Otherwise, you really have no reason to go through this. They can't force you to take an ERG.
  
  Darran

• Re: necessity of ERG post-diagnosis?
• Posted: 2008-03-19 11:05:18 By Elizabeth J
• Not sure why the need for continuous ERG tests but I have been told also to have the ERG every 2 years and had one a year ago to confirm I had the condition... have an appointment in May and will ask the question.. I really did not have good results so thinking the next time will show the same... Intestingly they told me my peripheral vision is not bad but yet my ERG showed bad news.. anyway Liz

• Re: necessity of ERG post-diagnosis?
• Posted: 2008-03-21 09:23:38 By Andrew S
• Is the ERG the test with the strong white light? I also thought this damaged my vision if so.

• Re: necessity of ERG post-diagnosis?
• Posted: 2008-03-21 23:51:30 By mike y
• I was diagnosed with RP in 2001, and I have only recieved one ERG. I have gone back to do the Goldman visual field test every year to determine the progression of my sight lose. I have seen many fine doctors and none have said anything about repeating the ERG. I would like to mention that my RP is pretty progressive and I am at approxiametely 5% central vision in both eyes at 37 and when I took the ERG, I failed it miserably. The doctors said it was totally flat. This may be the reason for the doctors to keep me from taking it again, but I don't think so. I will ask some of my physician freinds and get their opinion on the matter and get back with you. Hope this helps you.