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• CNTF update
• Posted: 2008-03-18 22:20:58 By Carol C
• MY brother had his 6 month check-up today on his CNTF implant, and , again, they would not give him any specifics, but said to him: "yes, this is a good day!" He notices improvement all the time. Of course, he's still quite visualy impaired yet compared to someone witout RP. He has 1 year to mull over the idea of leaving it in. They told him that if he chooses to leave it in longer, and then needs it out, he'll have to cover the cost. This will be substantial as I can't believe his insurance would touch it as it was research/ experimental. It seems to me like they might come up with a Phase II 1/2 or something, letting some keep them, and study their experience over many years, but I guess that would take different and MORE grant money. His checkup included an ERG, bloodwork, and exam by the specialist in charge, who said everything looked great. He has no more checkups until completion ( Sept) when he will get a field of vision test, among other things. Another note: he met a man at his mobility training classes with the exact symptoms he has, and he has never met anyone before like himself. Has anyone else experienced seeing a light that moves around rapidly in an arc around the edge, then disappears? This is different then the flashing lights, which he also has.

• Re: CNTF update
• Posted: 2008-03-19 10:56:55 By Elizabeth J
• Yes I have them and I always know they will disappear gradually, acutally they are kind of neat the way they make an arch and then disappear but have always thought them to be related to the flashes I see from time to time too. I notice light occurances and less vision if I laugh hard, sneeze, cough but it always comes back to normal. Never will stop laughing though.

• Re: Re: CNTF update
• Posted: 2008-03-19 13:10:24 By Vicki T
• I see them too! The best way for me to describe it is like seeing a white curved upsidedown teardrop shape which suddenly appears and moves in a circular motion and disappears in 2 or 3 seconds. I've noticed sometimes it happens like you said, when you sneeze, yawn, etc. Other times, for no reason at all, they just appear. I'm relieved when it goes away, cause it's a little scary. I was just thinking about posting about it on here, too. Now I realize others are seeing the same thing, too. I wonder what causes this? Is it a sign or result of our retinas deteriorating? I'm assuming it is. Hope I'm wrong. Does anyone have an explanation for it? It's kind of a cross between seeing a floater and a flash of light, if you can imagine that. Looking foward to any replies. Thanks!
  Vicki

• Re: CNTF update
• Posted: 2008-03-19 13:53:00 By Darran Z
• Carol,
  
  This is Phase II/III which the FDA only requires 3 phases. They combined the two together since there is nothing else out there now. So anything further would be outside the FDA requirement and would be Neurotech's own doing.
  
  How exactly are the flashes on the outside different than the others? I think it's all the same called photopsia.
  
  Darran

• Re: Re: CNTF update
• Posted: 2008-03-19 21:43:35 By Carol C
• Darren, I don't know what he means exactly, but he claims the flashes are just quick jolts, but this arc thing lasts awhile, swirls around, and then...gone. Maybe it is just a manifestation of the same thing. He's the reticent type, hard to get much out of him about anything, never complains, but he has mentioned this light thing several times. He must be talking to others, probably in his classes with the MCB, and some must deny this symptom, so I will tell him that others have the same. Carol

• Re: CNTF update
• Posted: 2008-03-19 15:59:44 By carolina s
• Carol , I am so happy for your brother ! I hope his imprvement continues. Unfortunatelly in my case The CNTF has not stopped the progression of the rp , so much so that I am considering having it removed . I am schedulled to have a 9 month check up soon and I will decide then. Hopefully I am more the exception than the rule.
  carolina

• Re: CNTF update
• Posted: 2008-03-20 10:03:47 By Robert H
• I've always monitored the forums but never posted anything, so I would say I'm new to the board, so hello to everyone.
  
  I too have the flashing lights, the one described as arcing around the edges is something I get on occasion, I can remember getting this in dark rooms when looking at a bright computer screen, or when I get light headed sometimes.
  
  I get other types of flashing effects also though.
  
  After eating or doing excercise I get blobs of lights around the edges of my vision or in the areas of the retina I think are damaged, maybe this is to do with oxygen levels or something like that?
  
  The last type of flashing I get is the one I hate most, I think it is something to do with the damaged or dieing receptor cells firing maybe, because I get mass carpet of tiny lights/lines coming and going in the damaged areas of my sight. This usually occurs when there is a big change in light levels.
  
  

• Re: Re: CNTF update
• Posted: 2008-03-20 10:10:32 By Darran Z
• It's photopsia. There are two theories behind this as far as I know.
  
  1. The vitreous gel changes texture in RP and as the disease progresses, the gel pulls on the retina thus you get the flashing lights.
  
  2. There are layers of ganglion nerve endings under the retina. It's possible that they coudl be "backfiring" but at the same time, they may be trying to reconnect with other "good" photorecepter cells.
  
  Darran

• Re: Re: Re: CNTF update
• Posted: 2008-03-26 23:20:40 By Marisa P
• Darran,
  
  I was recently told by one of the researchers involved that this is phase II of the CNTF and depending on the results they will consider a phase III. I guess what we have to hope is that there is improvement in most or all the participants.
  
  Marisa

• Re: Re: Re: Re: CNTF update
• Posted: 2008-03-27 09:21:14 By Darran Z
• Marisa,
  
  One thing for sure is that each site is inconsistant in telling their patients what they can or cannot share, etc. But they are in a combined Phase II and III. I suspect that site is confused on this issue. If you need further clarification, look up the protocol in clinicaltrials.gov or contact the FDA directly.
  
  Darran

• Re: Re: Re: Re: Re: CNTF update
• Posted: 2008-03-27 11:24:56 By Marisa P
• You are right, Darran. There are a lot of inconsistencies. When I stated that I thought it was phase II/III combined, I was told that phase III would be very expensive because it would involve more people and this phase was designed to test the safety. I was also told that the improvement that three of the ten participants who participated in phase I wasn't measurable in visual acuity tests.
  
  Only time will tell what this is really about. In the meantime, let's do waht we can to preserve what we have. :)
  
  Take care,
  Marisa

• Re: Re: Re: Re: Re: Re: CNTF update
• Posted: 2008-03-27 11:44:12 By Darran Z
• Beleive what you want. I just checked the protocol and it is a Phase II/III. The FDA only requires 3 phases. If there is another study, it would be Neurotechs endevor and not required by the FDA.
  
  Two of the reasons why the two phases are combined are:
  
  1. There is no treatment for RP.
  2. The sample size is smaller than normal because of the small population of RP.
  
  Therefore, the two phases combined as it is now.
  
  Darran