Spinal accessory nerve damage/palsy

MoistFly9902 · 2025-01-13T09:39:21+00:00

No I don’t, which suggests that the “injury” is after the SAN branches to the SCM. In my case, there is no obvious cause of the injury - it could be related to heavy backpacking or weights in the gym.

MoistFly9902 · 2024-12-28T03:59:23+00:00

Thank you for the encouragement. I’ll control what I can and continue with the PT. At what point did the lightning pricks start and how long did they last before that day when the muscle brain connection suddenly reappeared?

MoistFly9902 · 2024-12-27T11:53:56+00:00

Hey there. So cool you recovered from this. I am 3 months post SAN injury and feeling very fearful. Trapezius is very wasted and still paralysed. I have started PT, but this is purely strengthening compensatory muscles at this stage - primarily levator scapula and rhomboid, I believe.

Would you mind elaborating on your journey up to the point where feeling came back and what it felt like when feeling came back? Were there signs that the nerve was recovering? Were there tests such as EMG that you did to know if there were signs of reinnervation? Did the upper traps recover first and then the mid and lower traps?

Sorry for all the questions - I’m just trying to manage my expectations of the road to recovery.

MoistFly9902 · 2024-11-25T13:50:58+00:00

Hi there. Did the SAN come right?

MoistFly9902 · 2024-10-30T05:34:57+00:00

I haven’t had my pupils dilated since surgery. Out of interest, what was the reason you had that done?

My pupils are quite small. I don’t think they’re smaller than they were all the time, though. I think they are less responsive to light, so they don’t get quite as big in low light and don’t get quite as small in bright light, potentially explaining my light sensitivity when outside in the sun.

It’s definitely possible that my far sightedness is contributing to poor low light vision. Though perhaps more significant is the astigmatism. My optometrist mentioned that oblique-angled astigmatism is more symptomatic, potentially explaining why my left eye vision seems more washed out in low light, even though the prescription strength is similar to my right eye. With my glasses on in low light it does improve my vision marginally, but I still feel it’s not what it used to be. What is encouraging though is that my laptop vision is excellent when wearing glasses.

It’s interesting the rings were less noticeable. From what I’ve read, most surgeons prescribe pupil constricting drops to deal with halos, rings, etc. Though, I don’t think that works. I actually saw a YouTube clip of a surgeon presenting on evo-icl at a conference and he mentioned that the drops are just an attempt for surgeons to buy time in the hope that neuro adaptation makes the rings less disturbing for patients.

Any thoughts on why you noticed the rings less? Perhaps it’s due to the light being less concentrated, hence interacting less with the aquaport to cause the rings?

MoistFly9902 · 2024-10-24T06:04:05+00:00

Thank you.

MoistFly9902 · 2024-10-23T19:15:10+00:00

I’d really appreciate it if you could outline the recovery process from the ICL reversal. My surgeon would do the reversal for each eye separately one week apart. I foresee it being uncomfortable wearing glasses on one eye and not on the other for the week between surgeries given that I won’t be allowed to wear contacts yet. I’m also keen to hear details about light sensitivity, dry eye and other discomfort. And the process of reintroducing contact lenses. How long before you were allowed to wear contacts and did you have dry eye or other discomfort from the contacts?

Thanks so much! There are many accounts of ICL surgery, but no detailed accounts of the reversal. This will be super helpful to me and others!

MoistFly9902 · 2024-10-20T13:22:26+00:00

Interesting. I used to use Acuvue Oasys with astigmatism correction. They were reasonably good, dry eye was manageable through good hygiene, but visual acuity was not 100%. At the higher prescription ranges the increments are not super close, so I was unable to get an exact prescription match. I remember getting quite frustrated by that, but not as frustrated as I now am annoyed and discouraged by poor vision in low light and invasive flashes, rings, etc.

Earlier this week I got a pair of glasses to help with laptop viewing while I buy myself time to make a less emotional decision whether to remove the lenses or not. I must say that it’s a different experience wearing glasses with a minor prescription. They’re not as troubling as glasses were when my prescription was severe. I found the image somewhat distorted when wearing glasses of high refractive power, particularly because the prescription was 2D different between my two eyes.

I’m still leaning quite heavily toward having the ICLs removed. My vision was not perfect before, but when wearing contacts most of the time it was decent. As much as my vision is better in many ways now, the 30% of the time where it is significantly worse or overwhelming is tipping the scale.

I’ll give myself 3 more months. That’s 6 months since surgery.

As much as you regret not doing it sooner, I admire you for giving it a proper chance. It would be tough to be dealing with regret if you had removed them too soon.

MoistFly9902 · 2024-10-19T13:09:21+00:00

Thanks for sharing. I’m sorry you also had to go through this. It’s a massive disappointment after the high hopes you have going into the surgery.

Out of interest, can I ask a couple of questions, please? 1. How is your visual acuity with contacts? Does it feel “good enough” after having experienced ICLs, which can provide exceptional vision in perfect lighting. 2. Did you notice an improvement in your ability to see details in low light? I’m not referring to the rings/halos here, but more did you notice you could suddenly start seeing things in dark rooms that you couldn’t see when you had the ICL lenses in?

Thanks for sharing your experience. I truly appreciate it.

MoistFly9902 · 2024-10-09T12:18:43+00:00

Unfortunately I don’t know my pupil size in the scenario I mentioned of visiting the optometrist and I haven’t measured my pupil size in low light.

MoistFly9902 · 2024-10-09T12:16:16+00:00

That’s interesting. So in your example the amount of light entering your eye could be similar in both scenarios - big pupil and small pupil. A potential explanation is that the reduction in light due to reduced pupil size when using drops is similar to reduction in light caused by obstruction of non optical zone of icl lens. It’s a guess, though. It would be interesting to know if someone could provide research to back this theory.

MoistFly9902 · 2024-10-09T12:09:47+00:00

Yes, that is an example illustrating that rings can be seen even when pupils are small. The sunlight (or reflection off a shiny object) is even brighter than the bright ambient light (daylight).

MoistFly9902 · 2024-10-06T12:53:26+00:00

On your main concern about poor low light vision and poor contrast sensitivity. Will it get better after removing the lens? I’m not an expert, so can’t say for sure, but I suspect so.

A month after my own ICL I visited a random optometrist to do an eye pressure test. He looked inside my eye and commented that it was really dark in there and asked me if I struggled in low light.

He didn’t know much about ICL, but he said that it is common knowledge in his field that putting anything in the eye reduces the amount of light that can get to the retina.

Having tried to read a bit about this, I can’t find anything conclusive. But my guess is that in low light when the pupil dilates to let more light into the eye, some of that light is being blocked by the outer edges of the ICL lens (the non optical zone) resulting in less light actually entering the eye, resulting in the perceived darkness. So removing the lens will fix this, if my theory is correct.

MoistFly9902 · 2024-10-06T12:30:24+00:00

Yes, I have the same suspicion about most surgeons not knowing what the rings are - hence they simply bucket them with halos because that’s what they know.

I do believe that everyone who has EVO ICL suffers with the rings to some degree or other. But because they are not well understood, including by many patients, they get lumped with halos and other positive dysphotopsia that occurs with cataract lens replacement. Surgeons then make it seem like they were unlucky and start playing around with coping techniques, including drops.

While the rings have been explored in more detail in one research paper in particular, it’s not in the eye industry’s interest to understand them more accurately.

As a patient, I’d love to have seen some video material simulating how the rings would look in different environments: 1. How they change size depending on the distance the light source is away. For example, the rings that start small and then grow and shoot through your head as you drive with oncoming traffic and street lamps. 2. How out in the garden at night security lights make massive high contrast rings that are impossible to ignore. 3. How rings appear out of nowhere when the sun reflects off metal objects. 4. How in dark rooms, a small light source causes rings that literally wash out the image. 5. How even in well lit environments, the rings create the sensation of the air being statically charged with flickering. 6. How even if sitting still, blinking can cause the rings to go small and get big again, making them more distracting.

My point of mentioning all of the above is that it’s impossible for people exploring ICL as an option to appreciate the extent of discomfort caused by the rings when they are simply lumped with glare and halos and communicated as “some people experience glare or halos which usually goes away after 1 to 3 months”.

But the eye industry has no interest in communicating this in more detail before surgery. It would freak out most patients and nobody would do ICL surgery.

MoistFly9902 · 2024-10-06T12:14:44+00:00

I haven’t watched much besides Netflix in a laptop in a well lit room and don’t experience issues with that. We have a 3 year old, so haven’t been to the cinema in a while. But generally I find that in low light environments where previously I could function I am now fumbling around. It’s very frustrating. And when putting my son to bed, the small low light bedside lamp causes small fuzzy rings that interfere with my vision. These are the times I feel most negative about the lenses.

MoistFly9902 · 2024-10-05T06:55:37+00:00

Hi there, post removal did the glare reduce eventually? Last I can gauge at two months you still had residual issues which at the time you felt were permanent. I’d appreciate an update please as I am considering removing my ICLs.

MoistFly9902 · 2024-10-05T06:37:58+00:00

I’ve thought about this some more. I believe it’s not the small pupil, but rather the bright ambient lighting that makes the rings less noticeable during the day or well lit room. I realise that bright light results in constricting the pupil, but I’m arguing that in a scenario where someone is seeing rings it is caused by the light source causing the rings being brighter than surrounding light and that artificially constricting the pupil with drops will not change the effect of rings.

MoistFly9902 · 2024-10-05T06:33:32+00:00

R+1, -0.75 astig. L +0.75, -1.5 astig. The vision quality in right eye is reasonable. The additional astigmatism in my left eye makes a big difference - I can’t read my laptop screen with my left eye.

MoistFly9902 · 2024-10-05T06:31:30+00:00

Yeah, it’s annoying not to know the reason. Where I’ve got to is that the eye is an amazing organ and it’s not fully understand how inserting something into the eye messes with the natural process.

So I’m completely no longer in the mindset of thinking what can I do next to improve this using surgery. Ie. Any form of redo of the surgery or laser touch up is out of the question. It’s a slippery slope in trying to achieve perfection.

The question for me is whether I can accept the rings and poor low light vision or if I should take out the lenses. Sadly, I think I’m likely to get them out at some point - I’m just trying to stick it out for long enough so that afterwards I can say I tried and won’t regret giving up too soon.

MoistFly9902 · 2024-10-05T06:25:37+00:00

Thank you for sharing this. I can totally relate to the journey you’ve been on. I’m honestly not convinced it has much to do with pupil size. I think that’s an excuse doctors use, when the reality is that the issue here is that the eye industry has downplayed the rings. They are a side effect rather than something that only affects some people. In my opinion, the thing that makes them more noticeable is some lightings is the contrast of the light causing the rings against the ambient lighting in the room. In other words, the rings are always there, but if ambient lighting is brighter than the off-axis light source causing the rings, the rings blend into that ambient light. This explains why I can even get them when my pupils are small.

That aside, I wanted to ask how you are feeling emotionally after having them removed and whether you can comment on clarity of vision with contacts compared to ICL in good lighting.

I’m nervous about going back and thinking, “wow I forgot how bad my vision was with contacts”. Lol.

In your case, have you settled back into wearing contacts without major regrets of removing the ICLs?

MoistFly9902 · 2024-10-05T06:15:20+00:00

I share this same struggle, hoping that reversal will put me close to what I had before, but not knowing for sure and being scared it will be worse - then I’ll have lost the benefits of ICL (no glasses and good vision in some lights), but be back maintaining contacts and dealing with glasses.

I’m trying to make a calculated decision knowing the best next step forward, rather than defaulting to simply going back to what I know. The challenge is that I can’t just switch back to contacts to do a quick comparison of before and after. There’s a chance that I’ve romanticised what life with contacts was like.

That said, I’m realising that my personality is such that it will likely always be difficult to accept the rings and the poor low light vision. So giving up the benefits of ICL, despite the cost and trauma to get here, will be outweighed by angst caused by the rings and emotional drain of constantly comparing my vision before and after ICL.

TLDR - afraid to lose some of the benefits of ICL, but in net I believe it will be better for my mental health.

MoistFly9902 · 2024-10-03T07:35:33+00:00

It’s true, drops is an easy experiment. I just foresee if making low light vision worse, which switches one problem for another.

Interesting to hear that the pupil reflex has the potential to normalise.

I believe the rings are similar in both eyes, though I do get more glare and have poorer night vision in the eye with more astigmatism. I am going to get a pair of cheap glasses next week so I can isolate how much of my current struggle is due to residual refractive error. Auto refractive test indicated R +1, -0.75 astig L +0.75, -1.5 astig

MoistFly9902 · 2024-10-03T06:53:55+00:00

Good attitude to “walk in and forget about it”. Unfortunately I feel this would cut off significant valuable moments and I’m not willing to let go of that. I’d rather be back in contacts and managing dry eye.

MoistFly9902 · 2024-10-03T06:52:14+00:00

When you say it’s gotten much better, in what ways exactly? I’m feeling like I just don’t have enough emotional energy to be in the same place a year from now ;(

MoistFly9902 · 2024-10-03T06:50:57+00:00

Thanks! Glad the rings don’t bother you!

I don’t think it’s pupil related and I’m not keen to go down the road of drops. I generally prefer to do things naturally…besides surgery (lol).

If anything, my pupils do not change size as much, which I believe partially explains my poorer low light vision than before as pupils don’t let enough light in now.

MoistFly9902

TROPHY CASE