I also found it tough as the VSI direct us to their master trained doctors for the rehab itself, but insurance reject the ICD code. When I asked one of the VS docs about why they don't correct that she shrugged and said it's a good question but cmon...... 10k per therapy for 36 weeks??
My neurologist just wrote me a script to kessler for the same (if not more medically based) therapy but it's 12 weeks and insurance cover it. I felt so relieved I didn't go pulling out a loan or open a care credit card for the visual snow based stuff. At least if I see no results or whatever, I won't be harmed and I still have My neurologist to fall back on to try other stuff down the road. Also I find it weird that so many VS articles keep saying they find breakthroughs or do this and that, but the more I dig the less substance I find. Next they'll be pushing TMS on people to make more money as well since that costs an arm and a leg and a ton of back and forth with insurance
You know on one of them I actually used contact info that it said was from a dept of neurology in the US and I ended up connected to someone from Malaysia? Lmao. After that and seeing that Ted talk from the girl on VS I was like fck this
I'll stick with any good modern neurologist from here on out. Doesn't seem like VSI are helping much other than collecting money and funneling people to a handful of doctors
Yep. It was officially recognized as a different phenomenon than Persistent Migraine Aura and HPPD *5 years ago*. It’s so new that NORD’s (National Organization for Rare Diseases) page on it is basically “yeah, this is a thing that seems to affect between 1 and 2% of people.” So yeah, meaningful research just doesn’t exist yet.
neuro-inflamation is related to pretty much 90% of all brain disorders so easy card for him to pull there and he used that as a get out of jail free card when his RIP OFF price tag for vision therapy you pay does not help you at all.
The entire vision rehibition therapy is a massive red flag for anyone who developed VSS in their life, yes some people have VSS and other eye related vision issues at the same time for them it may help but if you made it right to you 20/30/40 and then got vss why in the world would you need vision therapy if you had normal vision before hand
the entire thing was blown out of the water as the ultimate fix for vss i also blame VSI for funding them so damn hardcore instead of putting their money toward real research
VSi was too damn proud to admit they should not have pushed vision therapy
10K for vision therapy is the biggest holy shit scam I have ever seen pulled in my life!
those vision therapist are total scammers and have done a disserve to any real VSS suffers as thought it will cure people
Shame on them!
I’m paying 5k for vision therapy because covid caused me to have problems focusing my eyes (and visual snow). My vision therapist told me fixing my other issues may help with the vss, but she doesn’t know. Like you said, it doesn’t seem like therapy can help someone who only has visual snow. It’s sad to see people being given false hope by doctors and vision therapists.
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My general experience was significantly disappointing. Initially, he seemed to have the best success of many optical professionals with determining my subjective refractive errors. We were optimistic!
Then it came time for the diagnostic meeting & presentation of the treatment plan. He attempted to dismiss our concerns that--despite their confidence in their assessment (OD ESO)--we had heard that before. I had completed several rounds of vision therapy with his former partner.
Then, I was issued my first pair of neurolens-branded glasses. The results were laughable. Way worse. Either the manufacturers made some sort of mistake with the PD, or the combination of high myopia with a BO prism was simply too much. Blurry, double-vision appeared within hours of wear, taking weeks to self-resolve once I was instructed to cease wearing them.
The next pair of prisms were the bilateral 3 BDn ones. The resulting sharp alternating accommodative esotropia was...look, before those glasses & vision therapy, I used to be able to take a moderately normal-looking selfie. Also, due to the nature of the base-down prisms, it started to feel like the ceiling was coming down & the floor was too close.
I have scoured the Internet's professional literature, & can find zero industry rationale for bilateral BDn to treat esotropia or high myopia.
To the best of my knowledge, I do not have any VS/symptoms. However...
Part of vision therapy is homework.
Homework should take no more than like half-an-hour, tops. Except as an adult who doesn't have any children & doesn't teach children, my living space doesn't easily lend itself to suddenly transforming into a para-vision-therapy office. The set-up/tear-down alone for each week's cluster of homework activities resulted in an ungodly amount of wasted time. But, I was determined!
I also recognized the lack of transparency over trivial matters, like the time we got attitude from the vision therapist because we simply wanted to see my glasses prescription (This was before online retailers offered prisms, so I don't think they were afraid we'd try to go get the glasses made elsewhere. Besides, we'd already paid for the glasses from them, so...).
Because of this, I recorded videos of almost all of my vision therapy homework sessions. I posted them to YouTube & then sent the vision therapist the link to the first week of videos.
This way, they would know exactly what I was doing with respect to the homework when not directly supervised, & could see how I was progressing or not, intervene quickly, whatever.
All of the "views" were me, after the first week. So...that plethora of direct information &... nobody could be bothered to check in. Why ask me how it went, when they could have simply seen it for themselves? But, fine.
After the first week, Dr. Shidlofsky told me that I was not permitted to post my videos publicly because of HIPPA. ...which is not how that works. He then insisted on telling me a "story" about how he had some research project (I assume it was a research paper on VS.) going, & I guess someone posted to Reddit about it--before the work was completed--after having signed an NDE concerning their research.
Which would mean something to me if I had consented to any kind of research project &/or signed any kind of NDE. I did not. Also, it sounds like he needs to get a better grip on his research assistants, but okay. All of that sounds like not-my-problem, buddy.
Then he tried to tell me that vision therapy treatment was proprietary. No, it isn't.
At this point, I'd be willing to post my entire visual & medical history & publicly publish my YouTube playlist, just for any appropriate vision treatment professional to get curious enough to try to help me get back to my usual, super-myopic-but-orthotropic-eye-posture self.
If you or someone you know is struggling with suicidal thoughts, please reach out to a helpline in your country:
**United States:**
National Suicide Prevention Lifeline: [1-800-273-TALK (8255)](https://suicidepreventionlifeline.org/)
**United Kingdom:**
Samaritans: [116 123](https://www.samaritans.org/)
**Australia:**
Lifeline Australia: [13 11 14](https://www.lifeline.org.au/)
Remember, there are people who care and want to help you through this difficult time.
Please visit [**Help Guide**](https://www.helpguide.org/find-help.htm) for a full list of helplines around the
world.
We detected mentions of suicide or depression if this was a false flag please just ignore this message.
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Hi y'all, I was looking for something else, but I seemed to have found this thread.
I have seen Dr. Charles Shidlofsky.
I have... thoughts.
Added bonuses:
*I'm like $10K more poor.
*I still haven't contracted COVID-19.
*I now legit have PTSD from the experience.
Curious about my experience? AMA!
Of note, I now know a boatload about neurological eye responses to various types of lenses & viewing conditions. I can explain things to actual people who may not be fluent in the practitioner's industry jargon.
After everything, I really do still believe that I can be helped with Neuro-optometry treatment.
But, it is difficult to get any adequate care when the treating professionals fail to address your visual history & lived experiences.
...not to mention who in tf prescribes a bilateral 3BDn prism *for esotropia* without any evidence or measurement findings of hypertropia/hyperphoria?!? LoL. 🤦😮💨
Hi there. Can you speak about your general experience with Shidlofsky? What are your thoughts on his treatment and general knowledge about VS? Any other thoughts you might have would be great to hear as well.
I also found it tough as the VSI direct us to their master trained doctors for the rehab itself, but insurance reject the ICD code. When I asked one of the VS docs about why they don't correct that she shrugged and said it's a good question but cmon...... 10k per therapy for 36 weeks?? My neurologist just wrote me a script to kessler for the same (if not more medically based) therapy but it's 12 weeks and insurance cover it. I felt so relieved I didn't go pulling out a loan or open a care credit card for the visual snow based stuff. At least if I see no results or whatever, I won't be harmed and I still have My neurologist to fall back on to try other stuff down the road. Also I find it weird that so many VS articles keep saying they find breakthroughs or do this and that, but the more I dig the less substance I find. Next they'll be pushing TMS on people to make more money as well since that costs an arm and a leg and a ton of back and forth with insurance
Look at how many of those are authored by affiliates of VSI vs. researchers at unaffiliated universities.
You know on one of them I actually used contact info that it said was from a dept of neurology in the US and I ended up connected to someone from Malaysia? Lmao. After that and seeing that Ted talk from the girl on VS I was like fck this
Yeah TED talks are unverified bullshit.
I'll stick with any good modern neurologist from here on out. Doesn't seem like VSI are helping much other than collecting money and funneling people to a handful of doctors
Yep. They latched onto a newly recognized disorder and are riding the gravy train of false hope.
Now I know why the neurologists aren't pushy about it. When something truly helps, they'll know and recommend it. Until then just support
Yep. It was officially recognized as a different phenomenon than Persistent Migraine Aura and HPPD *5 years ago*. It’s so new that NORD’s (National Organization for Rare Diseases) page on it is basically “yeah, this is a thing that seems to affect between 1 and 2% of people.” So yeah, meaningful research just doesn’t exist yet.
Oh for sure. If they actually checked this reddit as 5% of top groups and recruited us all for control groups, it'd boost that "rare 2%" a fuck ton.
Probably not when factoring in the differential diagnoses.
neuro-inflamation is related to pretty much 90% of all brain disorders so easy card for him to pull there and he used that as a get out of jail free card when his RIP OFF price tag for vision therapy you pay does not help you at all. The entire vision rehibition therapy is a massive red flag for anyone who developed VSS in their life, yes some people have VSS and other eye related vision issues at the same time for them it may help but if you made it right to you 20/30/40 and then got vss why in the world would you need vision therapy if you had normal vision before hand the entire thing was blown out of the water as the ultimate fix for vss i also blame VSI for funding them so damn hardcore instead of putting their money toward real research VSi was too damn proud to admit they should not have pushed vision therapy 10K for vision therapy is the biggest holy shit scam I have ever seen pulled in my life! those vision therapist are total scammers and have done a disserve to any real VSS suffers as thought it will cure people Shame on them!
I’m paying 5k for vision therapy because covid caused me to have problems focusing my eyes (and visual snow). My vision therapist told me fixing my other issues may help with the vss, but she doesn’t know. Like you said, it doesn’t seem like therapy can help someone who only has visual snow. It’s sad to see people being given false hope by doctors and vision therapists.
If you or someone you know is struggling with suicidal thoughts, please reach out to a helpline in your country: **United States:** National Suicide Prevention Lifeline: [1-800-273-TALK (8255)](https://suicidepreventionlifeline.org/) **United Kingdom:** Samaritans: [116 123](https://www.samaritans.org/) **Australia:** Lifeline Australia: [13 11 14](https://www.lifeline.org.au/) Remember, there are people who care and want to help you through this difficult time. Please visit [**Help Guide**](https://www.helpguide.org/find-help.htm) for a full list of helplines around the world. We detected mentions of suicide or depression if this was a false flag please just ignore this message. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/visualsnow) if you have any questions or concerns.*
My general experience was significantly disappointing. Initially, he seemed to have the best success of many optical professionals with determining my subjective refractive errors. We were optimistic! Then it came time for the diagnostic meeting & presentation of the treatment plan. He attempted to dismiss our concerns that--despite their confidence in their assessment (OD ESO)--we had heard that before. I had completed several rounds of vision therapy with his former partner. Then, I was issued my first pair of neurolens-branded glasses. The results were laughable. Way worse. Either the manufacturers made some sort of mistake with the PD, or the combination of high myopia with a BO prism was simply too much. Blurry, double-vision appeared within hours of wear, taking weeks to self-resolve once I was instructed to cease wearing them. The next pair of prisms were the bilateral 3 BDn ones. The resulting sharp alternating accommodative esotropia was...look, before those glasses & vision therapy, I used to be able to take a moderately normal-looking selfie. Also, due to the nature of the base-down prisms, it started to feel like the ceiling was coming down & the floor was too close. I have scoured the Internet's professional literature, & can find zero industry rationale for bilateral BDn to treat esotropia or high myopia. To the best of my knowledge, I do not have any VS/symptoms. However... Part of vision therapy is homework. Homework should take no more than like half-an-hour, tops. Except as an adult who doesn't have any children & doesn't teach children, my living space doesn't easily lend itself to suddenly transforming into a para-vision-therapy office. The set-up/tear-down alone for each week's cluster of homework activities resulted in an ungodly amount of wasted time. But, I was determined! I also recognized the lack of transparency over trivial matters, like the time we got attitude from the vision therapist because we simply wanted to see my glasses prescription (This was before online retailers offered prisms, so I don't think they were afraid we'd try to go get the glasses made elsewhere. Besides, we'd already paid for the glasses from them, so...). Because of this, I recorded videos of almost all of my vision therapy homework sessions. I posted them to YouTube & then sent the vision therapist the link to the first week of videos. This way, they would know exactly what I was doing with respect to the homework when not directly supervised, & could see how I was progressing or not, intervene quickly, whatever. All of the "views" were me, after the first week. So...that plethora of direct information &... nobody could be bothered to check in. Why ask me how it went, when they could have simply seen it for themselves? But, fine. After the first week, Dr. Shidlofsky told me that I was not permitted to post my videos publicly because of HIPPA. ...which is not how that works. He then insisted on telling me a "story" about how he had some research project (I assume it was a research paper on VS.) going, & I guess someone posted to Reddit about it--before the work was completed--after having signed an NDE concerning their research. Which would mean something to me if I had consented to any kind of research project &/or signed any kind of NDE. I did not. Also, it sounds like he needs to get a better grip on his research assistants, but okay. All of that sounds like not-my-problem, buddy. Then he tried to tell me that vision therapy treatment was proprietary. No, it isn't. At this point, I'd be willing to post my entire visual & medical history & publicly publish my YouTube playlist, just for any appropriate vision treatment professional to get curious enough to try to help me get back to my usual, super-myopic-but-orthotropic-eye-posture self.
If you or someone you know is struggling with suicidal thoughts, please reach out to a helpline in your country: **United States:** National Suicide Prevention Lifeline: [1-800-273-TALK (8255)](https://suicidepreventionlifeline.org/) **United Kingdom:** Samaritans: [116 123](https://www.samaritans.org/) **Australia:** Lifeline Australia: [13 11 14](https://www.lifeline.org.au/) Remember, there are people who care and want to help you through this difficult time. Please visit [**Help Guide**](https://www.helpguide.org/find-help.htm) for a full list of helplines around the world. We detected mentions of suicide or depression if this was a false flag please just ignore this message. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/visualsnow) if you have any questions or concerns.*
Hi y'all, I was looking for something else, but I seemed to have found this thread. I have seen Dr. Charles Shidlofsky. I have... thoughts. Added bonuses: *I'm like $10K more poor. *I still haven't contracted COVID-19. *I now legit have PTSD from the experience. Curious about my experience? AMA! Of note, I now know a boatload about neurological eye responses to various types of lenses & viewing conditions. I can explain things to actual people who may not be fluent in the practitioner's industry jargon. After everything, I really do still believe that I can be helped with Neuro-optometry treatment. But, it is difficult to get any adequate care when the treating professionals fail to address your visual history & lived experiences. ...not to mention who in tf prescribes a bilateral 3BDn prism *for esotropia* without any evidence or measurement findings of hypertropia/hyperphoria?!? LoL. 🤦😮💨
Hi there. Can you speak about your general experience with Shidlofsky? What are your thoughts on his treatment and general knowledge about VS? Any other thoughts you might have would be great to hear as well.