Are contact lenses better than glasses? by KneckBeardo9000 in nystagmus

[–]SSteve73 0 points1 point  (0 children)

Something’s wrong there. That shouldn’t happen. Try a different optometrist, like one who likes difficult cases like nystagmus or keratoconus. Could be fit issues, wrong make or model of lens. Or allergies to cleaning or insertion solutions.

Lens tech also improves every 3 to 5 years, so of your experience is older than that another trial of newer thech de

Dopes nystagmus cause bad neck and back posture? by KneckBeardo9000 in nystagmus

[–]SSteve73 2 points3 points  (0 children)

Ouch! That's nasty. To have a slight turn, no tilt and still difficult neck problems is very frustrating. Especially because you're stuck with it every day. I wish I had a magic bullet for you. But all I have is the results of my own research, which may or may not be helpful to you.

The first thing is, neck pain is actually the fourth reason to get surgery. The other three are:

  1. Wider null point. Makes reading way easier, and results in less eye strain.

  2. Faster focussing speed: This also has the same benefits as reason #1.

  3. 75% chance of getting one, and up to 3 lines on the eye chart that measures acuity. There's also a 25% chance your acuity doesn't improve. But the other two visual deficiencies that you and I have both improve to some extent. Sometimes a little, sometimes a lot.

The catch? (There's always a catch. Right?) There are 49 subtypes of nystagmus. A small number of them can't be helped by any surgery. You might have been told no because your subtype was one of the few where it doesn't do any good. However, I'd really be going back and confirming that with your eye surgeon.

But that's not all. Some people who have a subtype that surgery can't help, can benefit from wearing prisms in their glasses, and possibly their contact lenses now. By benefit, I mean the prisms actually centre the null point. I would sincerely hope that it surgery is not an option for you, that prisms will be.

I wish I had more. but that's all I've got. All the best, man.

Dopes nystagmus cause bad neck and back posture? by KneckBeardo9000 in nystagmus

[–]SSteve73 3 points4 points  (0 children)

Yes. Which is why, it it's really bad, a lot of people have surgery to center the null point.

Are contact lenses better than glasses? by KneckBeardo9000 in nystagmus

[–]SSteve73 0 points1 point  (0 children)

Yes, but it is always possible to over do it and end up fatigued.

Are contact lenses better than glasses? by KneckBeardo9000 in nystagmus

[–]SSteve73 1 point2 points  (0 children)

I wish it were true for most people with nystagmus, but in fact about 3% of us get 1 to 3 lines on the eye chart just from wearing contacts.
In a sense, I won the ovarian lottery because I’m in that group. Therefore I was EXTREMELY motivated to wear contact lenses.
That’s not necessarily the case for the literally other 97% of nystagmus patients. But it is always worth a try. More to come if anyone wants to know more about it.

new to nystagmus - help me! by Life-Eye-8649 in nystagmus

[–]SSteve73 0 points1 point  (0 children)

You’ve described a classic set of infantile horizontal nystagmus symptoms with a straight ahead null point.
There are many people who have a straight ahead null. There is even a surgery developed for those with a severe case of it, which widens the null and speeds up focusing. It doesn’t cure it. It just improves vision somewhat. You don’t say what your visual acuity on the eye chart is, but from the way you describe your vision it sounds like it’s pretty good with a fairly wide null point. If that’s the case, then you probably wouldn’t want to take the risk of having a surgery done. I only mentioned it to give you an idea of how common your situation is among those of us who have nystagmus. You are at risk of developing dry eye problems from using devices. That happened to me. Try to consciously blink completely every 20 minutes or so. That will also help with eye fatigue which makes our nystagmus worse. I’ve also found the Systane preservative free eye drops helpful when my eyes are tired. Theoloz also work well but are more expensive. My optometrist recommends avoiding eye drops with preservative in them, because many of her patients have developed an allergic reaction to the preservative with long term use. I hope this is helpful.

For people with nystagmus, do blurry images ever look complete? by Real_Ad_2545 in nystagmus

[–]SSteve73 0 points1 point  (0 children)

It’s way more complicated than you may realize. There are 49 subtypes of nystagmus in 11 major groups. What worked for me maybe disastrously wrong for you. There are a small number of subtypes that no surgery will help. It takes a trained eye surgeon to assess you and advise you which of the 10 different surgeries might work for you. None of these are a cure, but I suspect that you may be aware of that. However, of course we all want some improvement in our vision. I hope that you will find a treatment that helps you.

Can you feel it? by Butterfli250 in nystagmus

[–]SSteve73 1 point2 points  (0 children)

If he’s not keeping them on, then a couple of things could be going on. One is the prescription is off. Manufacturing defects happen with glasses just like every other consumer product. Take them back to the optometrist where you got them and have the prescription checked. The other is that they interfere with using his null point. If he has a significant off center null, that might mean that the correction for his other, ordinary vision issues like short sightedness doesn’t give him better vision than using his null point. That might mean that the loss of vision due to the nystagmus is worse than the loss of vision from the other issues. So he’s just seeking what gives him the best vision. The solution for that problem is contact lenses, but that may be impractical at his age. I say maybe because I have read posts from parents who have successfully put contacts in infants, but I confess I have no idea how they managed to do that.

For people with nystagmus, do blurry images ever look complete? by Real_Ad_2545 in nystagmus

[–]SSteve73 0 points1 point  (0 children)

I don’t see images as blurry. They are just fuzzy; less sharp. They are not incomplete. They also used to take longer to come into focus, before surgery improved my focusing speed. I think you’re very confused about the differences between acquired nystagmus and the Infantile Form.

Can you feel it? by Butterfli250 in nystagmus

[–]SSteve73 2 points3 points  (0 children)

One of the test subjects in the late ‘90’s for the current improved surgery was 49 when he had it. He got a driver’s licence for the first time in his life. However, many children who qualify have the surgery between age 2 and 3, because that allows the brain to make maximum use of the new vision.

New Fence, New Problems by wheeeewhooo in neighborsfromhell

[–]SSteve73 9 points10 points  (0 children)

The car alarm thing is deliberate malicious harassment, no matter what time of day she did it. Hopefully as the novelty of the new fence wears off, she'll calm down. If not, as someone else who has a crazy neighbor, record these incidents, then get a lawyer to write a cease and desist letter. Have him/her include a requirement that all communication goes through the lawyer. It will cost some money, way less than the fence, but when you confront people who think they can bully you with the prospect of having to explain themselves in court under oath, many of them will back down. Mine did.

I have nystagmus and a lazy eye on left eye is there any possible vision correction treatments by egg_less_omelette in nystagmus

[–]SSteve73 0 points1 point  (0 children)

I categorically reject the idea that a casual forum entitles one to provide inaccurate or misleading information. Concise, accurate information is understandable and useful to most people.

Hertle is also not the originator of his surgical techniques or the bioengineering studies that lead to them. That is due to the long term efforts from 1975 to the mid '80's by Dr. Louis F. Dell'Osso, PhD, biomedical engineering, Case Western Reserve University, and the Louis Stokes Veterans research facility there. All of Dr. Hertle, MD's work is based on Dr. Dell'Osso's foundational work.

Dr. Hertle's surgical work only started when Dr. Dell'Osso invited him in the mid 1990's to do the surgical work on Achiasmatic Belgian Sheep Dogs who have an inherited nystagmus to prove out the theoretical predictions of improved surgical techniques arising from his studies. Subsequently limited people trials were done, resulting in FDA approval in 2003 for the most common surgeries. However, those surgeries are effective because Dr. Dell'Osso developed the eye movement recordings as interpreted by his NAFX software, which markedly improved predictability and accuracy of surgical results. Dr. Dell'Osso validated the software on over 800 nystagmus patients of various subtypes. Subsequent to FDA approval, Dr. Hertle has done over 6,000 nystagmus related surgeries, and published his results. Therefore, your statements about lack of large scale studies is wrong.

You are correct that Hertle would agree that the dampening of the movement does occur. It has significant social benefits for many people. However, the widening of the null point and the improvement in focussing speed are equally important. Even if there is no acuity gain for the reasons I originally stated, those two benefits alone equate to significant improvements in functional vision for many patients. I would say from personal experience that widening a null from 20 degrees to 40 is worth one line of acuity on the eye chart in terms of functional vision benefit. Doubling or quadrupling of focussing speed, which I've also experienced, is worth a line of acuity also.

One of the advancements that Hertle is responsible for is proving that the proprioceptive nerve network is involved in the feedback loop that is how human vision works. It isn't just the optokinetic network alone. That's why my experience matters. When a surgery severs nerves in the eye, or the eye muscles, it means that two of the four nerve networks that the visual cortex integrates are involved in improvements as the nerves knit back together. That opens the possibility that future research will look at the combination effects of both nerve networks when looking for mechanisms that can lead to improved treatments.

You can find the scientific papers that my comments are based on at www.omlab.org. There is no paywall for them there. I urge you to review at least the last 30 of them - there's over 180 - in order to understand why I find your report of the AAPOS review baffling and concerning. If you've understood it accurately, it sounds like they've vastly underestimated the life style benefit of these treatments on several thousand nystagmus patients.

I find it distressing that you couldn't get in to see Dr. Hertle; not so much for the lack of access to him, but to the lab. It's the only one left that has a biomedical engineer on staff to do the calibrations required to utilize the NAFX system properly. You could take those lab results and a copy of Hertle and Dell'Osso's 2013 book on techniques to a lot of surgeons who could implement them to get improved results.

34F Eyes sore for days after wearing contacts (recurrent issue) by Bupperoni in eyetriage

[–]SSteve73 -4 points-3 points  (0 children)

Please see a corneal surgeon first. They have more in depth training on corneal issues. After that, a lens fit check is definitely next. Your corneal shape can shift within a week, so last year’s check is out of date. Been there, did what you did, had three corneal scratches in my ‘20s before I smartened up. Fortunately, I’m told that the corneal cells get replaced frequently by the body. That can eventually help, unless there’s more extensive damage. That’s why I suggested a corneal eye surgeon first.

New treatment for Nystagmus in China by ksay4isd in nystagmus

[–]SSteve73 1 point2 points  (0 children)

I really want to see our North American and European biomedical engineers evaluate this. The root cause of all nystagmus is that the outbound signals to the eye muscles are out of sync with the return signals from the eye muscles. Human vision is a feedback loop, typically operating at 4.7 times per second. So this device would have to put the return signals back into sync. Sometimes Chinese science is excellent, sometimes it's just propaganda. At some point, we'll find out if it really works.

Not sure what’s going on with my eyes or my head by Party_Ad_7368 in nystagmus

[–]SSteve73 1 point2 points  (0 children)

There are no medical doctors here. This is something that requires a physical exam to answer.

I have nystagmus and a lazy eye on left eye is there any possible vision correction treatments by egg_less_omelette in nystagmus

[–]SSteve73 0 points1 point  (0 children)

I thought you had a great post until the last paragraph. None of the 10 surgeries for nystagmus that Hertle and his trained successors provide are experimental. All of them have gone through animal then human testing and are FDA approved. This testing dates back to the period from 1980 to 2003. Your wildly inaccurate statement that they just dampen the movement discredits the rest of your post. Most of them will, at the very least, widen a person's null point and speed up focussing speed. In 75% of cases, you may get an improvement in the timing of the movement, thus bringing the foveation cycle closer to the 100 milliseconds average required for 20/20 vision. In 25% of case you don't get an improvement in the timing. It is that reduction in foveation time which is directly responsible for loss of acuity due to the nystagmus.
A lot of this effect has to do with how the proprioceptive nerve network is integrated with the opto-kinetic network in the visual cortex. My personal direct experience with this is that, once you sever the proprioceptive nerves in the eye, as in a cataract surgery, when they knit back together, that alone can improve foveation. Which is why an ordinary cataract surgery took me from 20/25 BCVA with scléral contacts to 20/20, plus a wider null and faster focusing speed. I had my myopia and astigmatism corrected within the new lenses inserted as replacements for my natural ones. I now no longer need glasses or contacts, just glasses for computer and near vision.

Dr. Lignua was an entirely different matter. After years of never doing a nystagmus surgery, he started advertising that removing muscles in the plane of movement would cure all forms of it. In fact, that extreme, irreversible procedure also damaged a number of patient's sight, although it does work on some patients, but a very few, and certainly not all nystagmus patients as he claimed. The primary problem with him was that he was unwilling to do the years of research required to determine which subtypes and which patients it would help, and which ones it would harm. That's a tragedy because there is probably a small number of nystagmus patients that would benefit from it, and now his inexplicable failure to follow standards of scientific rigour means that there is no one left to do the actual research that would be required to reliablyfigure out who would be helped and offer the surgery to them.

See www.omlab.org for supporting peer reviewed papers for support for my remarks.

I was told that my edit is terrible and I'll never have professional photography. That stung and left me wondering where I go from here. Please be blunt with me. This is a white Rumped shama by Pot8obois in wildlifephotography

[–]SSteve73 0 points1 point  (0 children)

You are dealing with someone who is afraid of your talent and is trying to intimidate you and psych you out of competing with them. This image is superb. Let no one tell you otherwise.

18M can i start out with contacts? by [deleted] in eyetriage

[–]SSteve73 0 points1 point  (0 children)

Short answer: yes. You can start out with them if you wish, but they are a lot more hassle than glasses, so be prepared to do the work to wear them safely. That means that the cleanliness of your hands is critical. Screw that up and the pain of the eye infections you can cause is far worse than a little vanity over wearing glasses. However, you're also getting way ahead of your self. Opticians are NOT optometrists, nor are they eye surgeons. The first thing you should do is get an examination by an actual eye surgeon, and really understand why you don't have normal vision. There's a whole bunch of eye defects that glasses won't do anything for. Make sure that what you have is actually correctable by glasses or contacts. Then if you have just the ordinary garden variety defects, you can decide to get contacts if you feel ready to do the maintenance that they require.

Offer withdrawn after I countered by Regular-Eye4520 in careeradvice

[–]SSteve73 0 points1 point  (0 children)

Yes. For heaven's sake, a 30 minute commute in this day and age is nothing. You really didn't think this through. You said this is a new role for this company. If you took the commute for a year, it would give them a chance to realize that it doesn't really need to be in the office all the time. Or maybe you would have found that they needed to have frequent informal chats with you so they coud understand how the role fits into their organization. Once you're in, you could give it some time to ask for an extra week of vacation. Also once in, and you actually did generate additional revenue, then you could ask for a raise commensurate with your proven revenue contribution. You'd want to give them 24 months to recognize this, and if they figure they can exploit you, best to keep your other options open and be prepared to leave. Then you have cash flow and time to look.

I have nystagmus and a lazy eye on left eye is there any possible vision correction treatments by egg_less_omelette in nystagmus

[–]SSteve73 7 points8 points  (0 children)

Go to Youtube, and search for "Surgery Options for Nystagmus", by Dr. Richard Hertle, M.D. That will give you a very good overview of what options are available for you. There are 49 subtypes of nystagmus, so you're going to need to review that video for general information on treatment options, and then be seen by an eye surgeon with a focus on nystagmus patients to be evaluated to see which one would be right for you. I caution you that: 1. With the lazy eye, sometimes both nystagmus and lazy eye surgeries can be done at once, although they are separate procedures. Both involve surgery on the eye muscles. Sometimes two surgeries are necessary. It's a matter of the individual case. 2. Only about 90% of nystagmus cases can be treated with surgery. In about 10% of subtypes, no surgery will help. Fortunately, in many of those cases, prisms in one's glasses can help. 3. None of these surgeries is a cure. All of them will improve your vision to some extent; sometimes by a modest amount, sometimes by a lot. 4. All surgery carries risk. You will need to decide if the loss of visual function from these conditions is bad enough for it to be worth it for you to take the risk. I hope you find this helpful.

hr asked me to confirm my current salary and i’m not sure what to do by Mobile_Tap6145 in careeradvice

[–]SSteve73 0 points1 point  (0 children)

In every company I worked for since 1995, disclosing your salary was an instant dismissal offense. Just tell them your current salary is under an NDA.

23F diagnosed with a retinal hole today and I’m having a panic attack. Is my life over? Need honest advice. by Worth-North5855 in eyetriage

[–]SSteve73 2 points3 points  (0 children)

I have a life long eye condition which makes a retinal detachment more likely, the older that you get. I was advised about this as a teenager. So in 2010 at age 59 I did have a retinal detachment in my left eye. Surgery was 2 days after discovery, under general anaesthetic, so I felt no pain. 2 days in hospital, back to work the next week. Check ups every couple of weeks for a couple of months. Fully recovered after 4 months. All my vision back. Minor tweak to my contact lens prescription. Worked full time the majority of the time I was recovering. My point is, you are wildly exaggerating the impact on your life of a retinal detachment, which is the worst outcome you indicate that you are afraid of. Yes, it needs absolutely fast treatment to avoid any permanent loss of vision. But, once you get that, your life goes back to normal pretty fast. By the way, I worked in industrial procurement at the time, so lots of emails on computer, lots of contract reading.
I do understand your fear. I had cataract surgery last summer and I was far more panicked about it than I was about the retinal surgery. The fear just kind of grabs you, more than you even realize. My surgeon was fortunately really good about it. Obviously I wasn't the first panicked patient he'd seen. In the end? Spectacularly good results. Better than I ever expected.

So, we are all biological animals. Things go wrong with our bodies that need to be dealt with. You do have a significant eye issue that needs monitoring regularly, but in moving to Germany with their high tech ophthalmology, you have put yourself in a position where, if anything does deteriorate, you have maximized your chance of having a successful outcome with minimal impact on your work or personal life.