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• CNTF update
• Posted: 2007-12-23 19:20:23 By Carol C
• So sorry again! My brother had to reschedule his 3 month checkup until Jan.8(transportation and child care problems). His wife will not be working by then, so unless the weather is a problem, it should happen ( it's been extra cold and snowy here in Michigan for December- so much for global warming!)Carol

• Re: CNTF update
• Posted: 2007-12-23 21:22:36 By carolina s
• Well I hope you and your brother keep warm !
  Here in Florida today was in the seventies !!!
  On the 3 month check up your brother will not be having any visual field tests but accuity tests and some people from the study are reporting some accuity improvement ( Like me ). I do not feel that my peripherial vision has improved but on the other hand I am in the early stage study and may need more time.
  Anyhow I hope your brother still feels that his side vision is getting better and please let us know.
  carolina
  

• Re: CNTF update
• Posted: 2007-12-25 21:39:34 By Amy Z
• Hi Carol
  Merry Christmas!
  Where are you from in Michigan? I too live in Michigan :)
  arzs69@yahoo.com

• Re: Re: CNTF update
• Posted: 2008-01-02 09:16:10 By Carol C
• Hi, Amy! Merry Christmas to you and yours! I live in Lansing, but my brother lives in Wayland, between Grand Rapids and Kalamazoo. He had his implant surgery done in Ann Arbor. He is finding the Michigan Commission for the Blind to be very helpful and supportive. Carol

• Re: CNTF update
• Posted: 2008-01-01 21:26:43 By Gina A
• I am wondering where you all had your surgery. I had mine done in Dallas in April of 2007. I had my 6 month check up in October and really didn't see any difference. I talked to the surgeon that did the operation and he had told me that I will probably see some change on my one year check up. I am hopeful. He also started me on the vitamin A and Fish Oil that I take daily. I am 37 years old and really only started noticing changes in my vision in the last two and half years. It seemed to hit me all at once. Has anyone heard of anyone that has "seen" a big change with this implant? I have a lot of flashes of light all the time. I can't remember if I had it before the surgery or not. Also, what type of study are you on? I am on the CTNF4 study. Apparently there are different types with people that had varying stages of the disease. Obviously you can see that I haven't been on this site in awhile. I sometimes get too depressed reading about it.

• Re: Re: CNTF update
• Posted: 2008-01-02 09:32:26 By Carol C
• Gina, my brother has had the implant for 3 months, and has seen a lot of changes. He is late-stage, and had lost 75% of his vision by diagnosis at age 34 ( X-linked cone-rod dystrophy). His symptoms are different from typical RP, with central vision going fisrt, but he also developed loss of peripheral vision, and night vision problems. He noticed very quickly that light didn't seem as painfully bright. He has been noticing a wider field of vision ( when looking at pastor's face in church, he can see his feet at the same time). Also, that narrow band around the edge of his vision where he could still make out objects in the dark, is getting wider. He lost his peripheral vision from the center outwards. He is working on remodeling his house, and his wife has noticed that he doesn't need her to check something, or look at something for him. He can catch a ball thrown to him. I could go on and on! I hope they can learn so much from this research.If they can determine why it is helping him a lot, but others not so much, then they may figure out a way to make something like this work for all! We know our exact mutation, and I think everyone should stay in touch with a genetic clinic for current information. Knowing just what gene is involved may be very helpful in learning just what is going wrong, and therefore, what may be done about it. This is all springing from the theory that these cells are not dead, only dormant, and their messages are not getting through, the same end result even though many mutations are involved. The cells may die at some point, but who knows? Carol

• Re: Re: Re: CNTF update
• Posted: 2008-01-07 18:25:57 By carolina s
• Gina
  Are you in the late stage or eely stage ? I am in the early stage and yes the flashing has increased dramatically and I have not seen any periperal benefit yet .
  If any of you with the CNTF implant are interested in joining the support group pls email me privatelly
  carolsalas@verizon.net

• Re: Re: CNTF update
• Posted: 2008-01-02 21:15:25 By Rick H
• Gina,
  
  I had my CNTF implant at the University of Michigan in Ann Arbor. I am at the 3 month point...really no measurable difference in my vision. I also get more light flashes in one eye.

• Re: Re: CNTF update
• Posted: 2008-01-13 21:24:07 By shequita j
• Wow, i have just read your message and i found it to be inspirational. I am 28 years old and desperately searching for some answers on diet, surgery, vitamin regimine, and other resource support.