Re: Has anyone tried alpha lipoic acid or vitamins B3 or 12?
Hi Gary,
Based on your consumption, does those supplements help in stop your current naion from worsening? Thank you.
Yes, I’ve taken ALA, citicoline, B12 and B3.? I’m not sure whether they helped protect against future events or not.? After the NAION diagnosis I was willing to try anything and ran up quite a bill on supplements. I still take B12 but I’m not?sure why. ?
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Re: Has anyone tried alpha lipoic acid or vitamins B3 or 12?
Yes, I’ve taken ALA, citicoline, B12 and B3. ?I’m not sure whether they helped protect against future events or not. ?After the NAION diagnosis I was willing to try anything and ran up quite a bill on supplements. I still take B12 but I’m not?sure why. ?
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Re: Has anyone tried alpha lipoic acid or vitamins B3 or 12?
Marc,
?
My doctor prescribed me with vitamin B12 .? Just an effort? protect the remaining good nerve
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Re: NAION CLINICAL REPORT BY GOOGLE GROK
Stanford is doing a study on TES electrical stimulation, but it is for glaucoma patients for vision loss.
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On Apr 14, 2025, at 4:03?PM, Russ Poter via groups.io <russpoter@...> wrote:
?
There are a few ongoing and completed clinical trials exploring various treatments for NAION (non-arteritic anterior ischemic optic neuropathy). These trials investigate different approaches, including intravitreal injections of stem cells, anti-VEGF agents, and surgical interventions, with the goal of improving visual function and safety. [, , ] Ongoing and Completed Trials: [, , ] - Intravitreal Injections: Some trials are focused on intravitreal injections of different substances, such as allogeneic bone marrow-derived mesenchymal stem cells (BM-MSCs), or anti-VEGF agents like ranibizumab or bevacizumab. These injections aim to target the optic nerve and retina, potentially improving vision or reducing the risk of further damage. [, , ]
- Surgical Interventions: While the Ischemic Optic Neuropathy Decompression Trial (IONDT) found no benefit from surgical intervention, some researchers are still exploring surgical options like optic nerve decompression, transvitreal optic neurotomy, and pars plana vitrectomy. [, ]
- Other Therapies: Some trials are investigating the use of oral steroids, and others are exploring the potential benefits of platelet-rich plasma (PRP) injections. [, ]
Example Trials: [] - A Phase 2/3, Randomized, Double-Masked, Sham-Controlled Trial of QPI-1007 in Subjects With Acute Nonarteritic Anterior Ischemic Optic Neuropathy (NAION): This trial, conducted at Stanford Medicine, investigates the effect of QPI-1007 on visual function and safety in patients with NAION. []
- A Non-Randomized Phase II Clinical Trial for Acute Non-Arteritic Optic Neuropathy: This trial explored the use of allogeneic BM-MSCs through intravitreal injection in patients with NAION. []
- A Randomized Controlled Phase 2a Study of RPh201 in Previous Nonarteritic Anterior Ischemic Optic Neuropathy: This study investigated the safety and efficacy of RPh201 in patients with previous NAION. []
Generative AI is experimental. [1]? [2]? [3]? [4]? [5]? [6]? [-]? [-]?
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NAION CLINICAL REPORT BY GOOGLE GROK
There are a few ongoing and completed clinical trials exploring various treatments for NAION (non-arteritic anterior ischemic optic neuropathy). These trials investigate different approaches, including intravitreal injections of stem cells, anti-VEGF agents, and surgical interventions, with the goal of improving visual function and safety. [, , ] Ongoing and Completed Trials: [, , ] - Intravitreal Injections: Some trials are focused on intravitreal injections of different substances, such as allogeneic bone marrow-derived mesenchymal stem cells (BM-MSCs), or anti-VEGF agents like ranibizumab or bevacizumab. These injections aim to target the optic nerve and retina, potentially improving vision or reducing the risk of further damage. [, , ]
- Surgical Interventions: While the Ischemic Optic Neuropathy Decompression Trial (IONDT) found no benefit from surgical intervention, some researchers are still exploring surgical options like optic nerve decompression, transvitreal optic neurotomy, and pars plana vitrectomy. [, ]
- Other Therapies: Some trials are investigating the use of oral steroids, and others are exploring the potential benefits of platelet-rich plasma (PRP) injections. [, ]
Example Trials: [] - A Phase 2/3, Randomized, Double-Masked, Sham-Controlled Trial of QPI-1007 in Subjects With Acute Nonarteritic Anterior Ischemic Optic Neuropathy (NAION): This trial, conducted at Stanford Medicine, investigates the effect of QPI-1007 on visual function and safety in patients with NAION. []
- A Non-Randomized Phase II Clinical Trial for Acute Non-Arteritic Optic Neuropathy: This trial explored the use of allogeneic BM-MSCs through intravitreal injection in patients with NAION. []
- A Randomized Controlled Phase 2a Study of RPh201 in Previous Nonarteritic Anterior Ischemic Optic Neuropathy: This study investigated the safety and efficacy of RPh201 in patients with previous NAION. []
Generative AI is experimental. [1]? [2]? [3]? [4]? [5]? [6]? [-]? [-]?
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Re: Acuvision Acupuncture
Hello,?
My husband Larry has dual NAION.? He lost 70% of his center vision in the left eye, 6 years ago, and last Oct he had an event in his right eye taking about 90% of his vision.? It has been devastating, for both of us.? We just turned 65 and planned to retire in May. The biggest loss was he is unable to drive, so he lost his freedom to just hook up his boat and go fishing, etc.? I am now his sole source for getting around, or he can uber.?
We reached out to Acuvision about their procedures, and they scheduled a call with us.? We felt like it was going to be a good treatment.? I requested they send me some "results" from other NAION patients treated, or other success stories.? Unfortunately they never sent the info.? But they did start sending my info on their supplements, and the actual device that they use for the electrical stimulation treatment.?
Since then, our son found a study being conducted at NYU Langone Eye clinic, in Manhattan.? Larry applied for the study and was excepted.? We traveled there in Dec. and when through all the testing, visual acuity, field of vision etc.? Then they set him up with a alternating current electrical stimulation device, and we took it with us back to Omaha.? He continued the 45 minute sessions every other day until he completed 30 total sessions.? We went back in Feb. and he was tested again.? He was one of the patients that responded the most favorably.? They said he gain 10% in his left eye, and about 9% in the right.? He did not know if he could tell the change but he was commenting that he saw certain things that he some time missed before.? The Dr. told us that it may improve up to 8 weeks after the completion of the treatment.? We are going back again, for a 3 month check, in May.?
It will be interesting to see if there is more improvement.??
I will keep you posted on his results next month.? Julie Labens
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Re: Acuvision Acupuncture
Hi Phil,
I read about the machine and supplement as well. But may I know if helps slowing down the progress?? I'm myself undergoing acupuncture treatment now. As what you said I am doing all I can to stop the naion from worsening because it hasnt stabilized yet after the first incident early February this year.?
On Mon, 14 Apr 2025, 09:58 Phil Moskowitz via , <Pjmoskowitz= [email protected]> wrote: Hi Cathy,
I live in New Jersey and also have had conversations with Dr. Rosenfarb. I even purchased the ACS he sells as an early hail mary attempt at vision restoration at home, but didnt?try any of his in-office treatments as they were very expensive in my opinion.... Quite honestly, I cant?claim that the ACS worked, but I also cant?say it made things worse. At the very least maybe it slowed the progression.... From everything that we all have been told, there is nothing to help us. However, there are stories of people trying low percentage ideas that "could" have helped in some small way.... You have to do what you feel is right. If you feel it is a price you are comfortable with (even if there are no results) then you should try it and then you will always know at least you "tried"... I dont?regret being out the $2k for vitamins and the unit cause now I dont have the lingering?"what if I tried it" in the back of my head.?
Personally, I think his treatments may be better/more effective for slowing progression of vision loss rather than restoring vision. He does admit that and focuses the NAION discussion on preventing?further?cell death.... Anyway, happy to chat more if you want. Please feel free to email me.?
37 y/o... unilateral... first and only NAION event July 2023
On Sat, Apr 12, 2025 at 1:24?PM cathysalder via <cathysalder= [email protected]> wrote: Hello! I am new to the group and so happy to have found this. I checked on Facebook first and did not find any support groups. I live in Utah and was diagnosed with NAION in November 2024. It’s honestly been a really rough transition. Our disabled adult daughter lives with us and I am her primary caretaker so that has its very own and separate challenges. I have really isolated myself as I have found that being in large groups is really unsettling for me. I feel so discombobulated. I have been driving and drove on the freeway yesterday and felt really good about it. In my online research, I came across a site called Acuvision acupuncture in New Jersey with an Dr. rosenfarb in New Jersey that claims to be able to restore some vision loss. Have any of you heard of this or tried it? I am supposed to have a phone call with them next week to discuss options. I’d love to know if any of you have found anything that has helped you like this company claims it can. Thank you in advance!
--
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Re: Acuvision Acupuncture
Hi all,
I do recall a journal article discussing acupuncture for NAION, but the study was done in China under hospitalization. ?The study subjects had needles placed at precise points in and around the eyeball after a special contact lens was inserted to ensure proper placement of the needles; afterwards the needles were connected to wires and an electrical current was passed through them. ?Subjects did report an improvement in vision--not sure how soon after their event that they received treatment.
Paul
The two hardest tests on the spiritual road are the patience to wait for the right moment and the courage not to be disappointed with what we encounter----Paulo Coelho?
I would be true, for there are those who trust me: I would be pure, for there are those who care; I would be strong, for there is much to suffer; I would be brave, for there is much to dare-Howard Walter
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On 04/13/2025 9:58 PM EDT Phil Moskowitz via groups.io <pjmoskowitz@...> wrote:
?
?
Hi Cathy,
?
I live in New Jersey and also have had conversations with Dr. Rosenfarb. I even purchased the ACS he sells as an early hail mary attempt at vision restoration at home, but didnt?try any of his in-office treatments as they were very expensive in my opinion.... Quite honestly, I cant?claim that the ACS worked, but I also cant?say it made things worse. At the very least maybe it slowed the progression.... From everything that we all have been told, there is nothing to help us. However, there are stories of people trying low percentage ideas that "could" have helped in some small way.... You have to do what you feel is right. If you feel it is a price you are comfortable with (even if there are no results) then you should try it and then you will always know at least you "tried"... I dont?regret being out the $2k for vitamins and the unit cause now I dont have the lingering?"what if I tried it" in the back of my head.?
?
Personally, I think his treatments may be better/more effective for slowing progression of vision loss rather than restoring vision. He does admit that and focuses the NAION discussion on preventing?further?cell death.... Anyway, happy to chat more if you want. Please feel free to email me.?
?
37 y/o... unilateral... first and only NAION event July 2023
?
On Sat, Apr 12, 2025 at 1:24?PM cathysalder via <cathysalder= [email protected]> wrote:
Hello! I am new to the group and so happy to have found this. I checked on Facebook first and did not find any support groups. I live in Utah and was diagnosed with NAION in November 2024. It’s honestly been a really rough transition. Our disabled adult daughter lives with us and I am her primary caretaker so that has its very own and separate challenges. I have really isolated myself as I have found that being in large groups is really unsettling for me. I feel so discombobulated. I have been driving and drove on the freeway yesterday and felt really good about it. In my online research, I came across a site called Acuvision acupuncture in New Jersey with an Dr. rosenfarb in New Jersey that claims to be able to restore some vision loss. Have any of you heard of this or tried it? I am supposed to have a phone call with them next week to discuss options. I’d love to know if any of you have found anything that has helped you like this company claims it can. Thank you in advance!
?
?
?
?
--
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Re: Acuvision Acupuncture
Oh my goodness! Thank you! I’d love to chat sometime.?
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Re: Acuvision Acupuncture
Thank you for the article. I did get some good information from it.?
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Re: Acuvision Acupuncture
Hi Cathy,
I live in New Jersey and also have had conversations with Dr. Rosenfarb. I even purchased the ACS he sells as an early hail mary attempt at vision restoration at home, but didnt?try any of his in-office treatments as they were very expensive in my opinion.... Quite honestly, I cant?claim that the ACS worked, but I also cant?say it made things worse. At the very least maybe it slowed the progression.... From everything that we all have been told, there is nothing to help us. However, there are stories of people trying low percentage ideas that "could" have helped in some small way.... You have to do what you feel is right. If you feel it is a price you are comfortable with (even if there are no results) then you should try it and then you will always know at least you "tried"... I dont?regret being out the $2k for vitamins and the unit cause now I dont have the lingering?"what if I tried it" in the back of my head.?
Personally, I think his treatments may be better/more effective for slowing progression of vision loss rather than restoring vision. He does admit that and focuses the NAION discussion on preventing?further?cell death.... Anyway, happy to chat more if you want. Please feel free to email me.?
37 y/o... unilateral... first and only NAION event July 2023
On Sat, Apr 12, 2025 at 1:24?PM cathysalder via <cathysalder= [email protected]> wrote: Hello! I am new to the group and so happy to have found this. I checked on Facebook first and did not find any support groups. I live in Utah and was diagnosed with NAION in November 2024. It’s honestly been a really rough transition. Our disabled adult daughter lives with us and I am her primary caretaker so that has its very own and separate challenges. I have really isolated myself as I have found that being in large groups is really unsettling for me. I feel so discombobulated. I have been driving and drove on the freeway yesterday and felt really good about it. In my online research, I came across a site called Acuvision acupuncture in New Jersey with an Dr. rosenfarb in New Jersey that claims to be able to restore some vision loss. Have any of you heard of this or tried it? I am supposed to have a phone call with them next week to discuss options. I’d love to know if any of you have found anything that has helped you like this company claims it can. Thank you in advance!
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Re: Acuvision Acupuncture
Thank you! It’s nice to know someone else who understands.?
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Re: Our new NAION Zoom Group starts Wednesday April 23,2025
Hello,
I would love to be a part of this too! Thanks!
Debra McC
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On Apr 13, 2025, at 7:42 AM, ReeRee via groups.io <Kycouch@...> wrote:
? This is awesome. Can’t wait to hear others experiences.?
Cheryl C Hello NAION Friends,
So glad there was a strong response indicating interest in supporting each other on Zoom. Our first NAION Zoom meeting will be held on Wednesday, April 23, 2025@ 3:00 PM in California (PDT) corresponding times are
? Mountain Time (MDT): 4 PM
? Central Time (CDT): 5 PM
? Eastern Time (EDT): 6 PM
? London, UK (BST): 11 PM
? Melbourne, Australia (AEST): 8 AM on April 24.
The Zoom link and other details will follow. All participants with great ideas, experience with groups, and those with suggestions are welcome to email them.? Family members are welcome if over 18 years of age. This is a free peer support group and with your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability.?
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Re: Our new NAION Zoom Group starts Wednesday April 23,2025
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Hello NAION Friends,
So glad there was a strong response indicating interest in supporting each other on Zoom. Our first NAION Zoom meeting will be held on Wednesday, April 23, 2025@ 3:00 PM in California (PDT) corresponding times are
? Mountain Time (MDT): 4 PM
? Central Time (CDT): 5 PM
? Eastern Time (EDT): 6 PM
? London, UK (BST): 11 PM
? Melbourne, Australia (AEST): 8 AM on April 24.
The Zoom link and other details will follow. All participants with great ideas, experience with groups, and those with suggestions are welcome to email them.? Family members are welcome if over 18 years of age. This is a free peer support group and with your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability.?
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Re: Any interest in a Naion Zoom Support Group?
CDT ... Monday or Friday might?be best - prefer morning before noon after 8am
Hello NAION Friends,
Do you have any interest in participating in a NAION zoom group type self help group that meets once a week (or once a month) to share our experiences, concerns and knowledge?
I am on Pacific Coast Time but am flexible as to anytime and any day of the week.? I feel like this condition is isolating and it would be wonderful to chat and support each other.
Please reply to this email or send me a private email message so I can ascertain if there is any interest. Include your time zone and which day of the week might work for you.?
This would not be a professional therapy zoom but a friendly group self support type meeting.?
Thank you, Debra?
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I lost central vision in December 2021 in my left eye. ?This was within a week of a fluid change out in the same eye 90 days post retina repair surgery. ?The day after the flush and refill (the fluid being flushed included silicon oil to prevent scar tissue), my vision was 20/25 but I had floaters and the remaining silicon oil created its own set of floaters so my clarity wasn’t perfect but that was expected. ?A week later at a post op follow up that eye was 20/200. ?After 3 years my recorded vision is 20/60 although in order to get that number I have to turn and tilt my head in order to see the letters in my peripheral vision. I hope your situation resolves. I’m sure you’re worried.?
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Re: Any interest in a Naion Zoom Support Group?
I’d like to be added as well! Thank you! Danette
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On Apr 12, 2025, at 1:36?PM, cathysalder via groups.io <cathysalder@...> wrote:
? I would love to be included in a zoom support group. Please add me to your list. Thank you!
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Re: Our new NAION Zoom Group starts Wednesday April 23,2025
Good day, I would also like to join the group. Thank you so much for the opportunity. John Roper
This is awesome. Can’t wait to hear others experiences.?
Cheryl C Hello NAION Friends,
So glad there was a strong response indicating interest in supporting each other on Zoom. Our first NAION Zoom meeting will be held on Wednesday, April 23, 2025@ 3:00 PM in California (PDT) corresponding times are
? Mountain Time (MDT): 4 PM
? Central Time (CDT): 5 PM
? Eastern Time (EDT): 6 PM
? London, UK (BST): 11 PM
? Melbourne, Australia (AEST): 8 AM on April 24.
The Zoom link and other details will follow. All participants with great ideas, experience with groups, and those with suggestions are welcome to email them.? Family members are welcome if over 18 years of age. This is a free peer support group and with your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability.?
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Re: Our new NAION Zoom Group starts Wednesday April 23,2025
This is awesome. Can’t wait to hear others experiences.?
Cheryl C
Hello NAION Friends,
So glad there was a strong response indicating interest in supporting each other on Zoom. Our first NAION Zoom meeting will be held on Wednesday, April 23, 2025@ 3:00 PM in California (PDT) corresponding times are
? Mountain Time (MDT): 4 PM
? Central Time (CDT): 5 PM
? Eastern Time (EDT): 6 PM
? London, UK (BST): 11 PM
? Melbourne, Australia (AEST): 8 AM on April 24.
The Zoom link and other details will follow. All participants with great ideas, experience with groups, and those with suggestions are welcome to email them.? Family members are welcome if over 18 years of age. This is a free peer support group and with your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability.?
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Re: Our new NAION Zoom Group starts Wednesday April 23,2025
Thank you so much for organizing this!
My husband and I would like to join as well. Please let me know what information you need from us.?
Thank you!
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On Apr 12, 2025, at 3:38?PM, Andrew Watson via groups.io <aowats3@...> wrote:
? Ok, I’m in after all, please. Maybe a good idea to have some kind of outline/organization. So many people on the call without that could be chaotic. Just an idea….
Andy On Apr 12, 2025, at 13:53, Debra B via groups.io <debrownstein@...> wrote:
? Hello NAION Friends,
So glad there was a strong response indicating interest in supporting each other on Zoom. Our first NAION Zoom meeting will be held on Wednesday, April 23, 2025@ 3:00 PM in California (PDT) corresponding times are
? Mountain Time (MDT): 4 PM
? Central Time (CDT): 5 PM
? Eastern Time (EDT): 6 PM
? London, UK (BST): 11 PM
? Melbourne, Australia (AEST): 8 AM on April 24.
The Zoom link and other details will follow. All participants with great ideas, experience with groups, and those with suggestions are welcome to email them.? Family members are welcome if over 18 years of age. This is a free peer support group and with your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability.?
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GaryGBrown
Danette Janickovic
ReeRee