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• late stage rp and cntf
• Posted: 2008-02-16 18:40:26 By Nikki s
• anyone with late stage rp in the cntf trial showing any improvements at all? thanx

• Re: late stage rp and cntf
• Posted: 2008-02-17 17:58:44 By Carol C
• Yeah! My brother is late stage, noticing remarkable improvement, which the researchers acknowlege, but don't give actual results during the course of the study ( I have alot of messages on here about it- although I think there is another "Carol C.", so I may have to come up with another moniker- maybe Carol Y. C.)

• Re: Re: late stage rp and cntf
• Posted: 2008-02-17 18:07:13 By Nikki s
• thank you carol yes i have read your posts very encouraging..i wonder if anyone else is noticing improvements have not heard from alot of them...is he being offered the chance to leave it in or are they going to take it out and if so when is his 12 months up? thanx!!!

• Re: Re: late stage rp and cntf
• Posted: 2008-02-17 18:08:59 By Michael Z
• Hearing your brother has seen remarkable improvement brings chills to my body. That gives me great hope. Having no vision in my left eye and a limited amount in my right eye, I'm curious to what improvements he sees and how long ago has he had the surgery. Thanks!

• Re: Re: Re: late stage rp and cntf
• Posted: 2008-02-17 18:18:20 By Carol C
• Michael and Nikki,
  
  

• Re: Re: Re: late stage rp and cntf
• Posted: 2008-02-17 18:31:52 By Carol C
• Michael and Nikki, sorry for that last one! I don't know what happened. But... my brother has had the implant for about 5 months, and yes, he has been offered the option of keeping it at the end of the trial ( 12 months). Which sounds good, except they can't tell him if he needs it to be removed at some future date, will this be paid for? His insurance is sure to refuse to touch anything experimental. If he gets a good answer on this, I'm sure he'll want to keep it ( and to offer it, they must have good info from animal research that it's reasonably safe). He had a good point: "I'm going to lose my vision anyway- the worst that can happen is that it will go sooner than I thought", when he went into this study. But racking up a huge medical bill for his sweet little family is not something he wants to risk.And his progress sends chills down my spine, too. I have 4 sisters and 9 nephews facing this risk now. Hope for a treatment seems a miracle! Carol

• Re: Re: Re: Re: late stage rp and cntf
• Posted: 2008-02-17 19:01:23 By Nikki s
• ok so they are saying there is a chance he might have to take it out in the future? i wonder why... hmmmm hopefully he will retain the vision he has if and when they take it out. are the dr.s saying anything about how long after the trial it will be before a decision is made on the treatment for the public? again thx for your posts!!

• Re: Re: Re: Re: Re: late stage rp and cntf
• Posted: 2008-02-17 19:04:40 By Carol C
• No, THEY are not saying it may have to come out. My brother is considering all future possibilities in making this decision. Carol

• Re: Re: Re: Re: Re: Re: late stage rp and cntf
• Posted: 2008-02-17 21:34:43 By Nikki s
• ah i see ok thanx carol!

• Re: Re: Re: Re: late stage rp and cntf
• Posted: 2008-02-17 19:21:39 By Michael Z
• With his late stage RP, did he have no vision or light perception? What type of progress has he made?

• Re: Re: Re: Re: Re: late stage rp and cntf
• Posted: 2008-02-18 11:47:01 By Carol C
• Paul had lost 75% of his vision at diagnosis at age 34. We were shocked, he functioned so well. He had about 10 degrees of central vision, and had very poor night vision.Blind spots were a problem, whacking his head on things he didn't even know were there. Bright light has been a big problem, puts a whitish film on everything, like that white glare on winter windshields in the sun.The acuity issues seemed like Vaseline had been smeared across everything. He had given up reading, it was just too hard. He had lots of trouble distinguishing colors. He could also see you better from the edges of his vision, so would look away from you to see you better. My mother's sister, an effected carrier, had all these same issues and behaviors.Since the implant: he reports feeling like " my eyes are working together again"( instead of similar to looking through binoculars without adjusting them to your head- there is always "something" in the middle). He can read the newspaper again, without his glasses. In church, he must sit close to see the words on the screen, and at that position, has only been able to see the pastor's face. Now, he can see his face and feet at the same time. He can now see his own leg crossed across his lap as he looks at TV. He looks at me directly now, I notice. His wife has noticed that he doesn't need her to double-check his work ( slowly doing some remodeling). Lights don't seem as bright, headlight glare was actually painful before, no longer. Now, he may be one of those with a higher dose ( the study called for participants to get a higher or lower dose), or it could be that cone-rod dystrophy is better targeted by this treatment than rod-cone dystrophy (typical RP). Carol