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CNTF Non Update
Posted: 2007-12-13 16:24:59 By Larry G
To All,

I feel like I should report that I had my 6 month follow up about 1 1/2 weeks ago. I had an acuity check, blood work and over two days 4 visual fields in each eye. No results were past on to me. The most information I got was that all the visual fields were consistant with each other. I alos have no personal findings to report. I haven't notice any change in my vision or visual field. However, in the past, when my visual field has gotten worst I have really noticed that either. Wish I had something to really report. I go back in 6 months.

Larry

Re: CNTF Non Update
Posted: 2007-12-13 17:01:27 By carolina s
Larry
Thank you for sharing but my own experience with the trial is that you need to ask !!! They will NOT voluntarily share any info. with you UNLESS you push them to ! I know the results of my accuity tests and field tests due to my perseverance.....Anyhow it is good to know you feel you are not worse than before the implant. By the way....have you heard any news about Neurotech deciding not to take the implant out ?
Cheers
carolina

Re: Re: CNTF Non Update
Posted: 2007-12-14 17:03:06 By Marisa P
You are right, Carolina. Most doctors don't tell you anything unless you ask so you really have to prepare and know what to ask.

I wonder why they plan on leaving it in?

Good luck to the both of you.

Re: Re: Re: CNTF Non Update
Posted: 2007-12-14 18:39:54 By Larry G
My visual field defect tests are being conducted by the Retina Foundation of the Southwest and they abide by the "letter of the law" nd would not share the results of those test, even though I did ask. If you all know the results of your test can you advise if there is improvement? They did give me the results of my acuity which actually was worse in my left eye. I didn't share that because I have more issues going on than just the study. I am taking drops for CME and have developed an allergic reaction which may have affected my acuity on this test. It is also my understanding than Neurotech my leave the implant in after the study because it will still have a lot of medication left to be dispense after the two years.

Larry

Re: Re: Re: Re: Re: CNTF Non Update
Posted: 2007-12-15 09:56:46 By carolina s
Paul
I do not know about the study for the advanced rp but in my study for the early stage they will be leaving the implant in indefinetly. The original study was for 2 years and not 1 anyhow.
Cheers
carolina

Re: Re: Re: Re: Re: Re: CNTF Non Update
Posted: 2007-12-15 11:52:15 By Paul S
For the advance RP study, it was a 2 yr study, 1 yr with the implant and 1 yr after implant removal.

My 3 month follow-up is in Jan. so I guess I will find out then if it has changed.

Paul

CNTF Non Update
Posted: 2007-12-15 19:45:57 By Deborah D
I go in the second week of January for my six-month visit (four visual fields - ouch). I'll be asking a lot of questions for all of us. I, too, am in the early stage and was planning on the implant staying in for two years. I'm very happy that they're leaving the implant in (if it's true), since Neurotech and its governmental overseers would only be doing so if they felt the implant was helpful (just surmising here).

~Debbie

Re: CNTF Non Update
Posted: 2007-12-16 17:36:46 By Patti H
To all;
I know its great to have been chosen as part of the CNTF clinical trials, but don't forget you have patient rights. Its your right to know what it going on with your own vision and how long they plan to leave it in, etc.

Re: CNTF Non Update
Posted: 2007-12-16 21:18:24 By Deborah D
You're right that we should still use our brains and protect our patient rights. If there is a decision to keep the implant in, believe me, I'll be getting another consent form. They've had me sign new consent forms for every little change, so I'm sure I'll soon being seeing a new one (usually with my eyes dilated) if this is true.

Deb

Re: Re: CNTF Non Update
Posted: 2007-12-17 21:26:34 By Joshua D
My doctor also told me that Neurotech is considering leaving the implants in indefinately. I guess it's just a rumor right now.

Re: Re: Re: CNTF Non Update
Posted: 2007-12-18 15:31:17 By andrew b
In a double blind study (which most are) the doctor's don't know. The idea is so that the results are tampered with or guided due to know what's happening. They also don't tell you because they don't want you to drop out if you start getting worse.

Re: Re: CNTF Non Update
Posted: 2008-01-09 14:14:20 By Carol C
Yes, my brother was told yesterday that the FDA has approved leaving the implant in, if that is the patient's choice. They did not have an answer yet though for "what if I want it taken out later? Will I have to pay for this?" They expect these cells to go on making CNTF,no end in sight,I guess learning this per animal research. I wonder how these cells are nourished??? I guess, if willing to risk it for 1-2 years, why not forever? Especially if improvement happens. Maybe some forms of RP will show improvement much later than others. That would be great to learn about. Since it seems there are so many different mutations, it makes sense that different experiences would happen, even with treatment. I just learned that in December, 10 blind/nearly blind RP'ers were implanted, must be they are expecting/hoping to bring vision back. Hope so-I have 4 relatives in this state. Carol

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