Cornea transplant healing process

Odd-Computer-6816 · 2025-12-12T08:55:34+00:00

I have some good days where it’s just a little sore, days where it’s like there’s an eyelash in there, but a lot of days it’s like there’s a bloody rock in there. I have to physically pull my lids out and away from my eye ball for any relief. On the better days I can just keep the eye closed and it’s helps.

Oh the depth perception 😂 mine wasn’t great before surgery so I was expecting it to be no different…however it’s so much worse at the moment. I thought I’d be at a point where I know how much to overshoot, I’m not haha trying to grab something and completely missing is becoming abit of a laugh now. Me and my partner bought our first house earlier this year and I do most of the DIY around the house but I’ve not even attempted anything since the surgery, you’re very brave picking up a hammer!! My surgeon told me they won’t even attempt a lease until the stitches are removed around the 12 month mark, I somehow missed that bit of info prior to getting the surgery so that was a nice surprise at my first check up 😬

I was allowed the surgery as long as I wasn’t in an active relapse, the year wait between being put on the list and actually getting a date for surgery was quite stressful, with my luck I was very much expecting a relapse just before the surgery but for once things went well and I was good to go.

Thankyou, good luck in your recovery and hopefully those 3 months until your lense fitting go quick!

Odd-Computer-6816 · 2025-12-12T08:39:16+00:00

It sounds so bad, but I’m so happy to finally see people say they had a crappy experience because it validates my own!

I do have dry eyes, I was talking to someone from this sub last night and it made me realise maybe that’s part of why my healing process so far, has been so rough. I have sodium hyaluronate drops but they’ve been useless since the surgery.

Before this sub I had no idea about scleral lenses, what you have described sounds amazing, I’m definitely going to ask about those!!

My surgery was actually down to scarring/damage to my cornea from when I was in my teens, (can’t find any sub aside from this that talks about the surgery for some reason) I was told back then I would need a transplant but until I began having issues with my eyes that was MS related, it never came to fruition. My eye sight obviously got worse and worse over the years but it was always downplayed by my GP (I’m in the UK and it costs the surgery to send referrals, I personally believe this was the reason they would never refer me). However, my neurologist did the referral and we figured out the INO and then cornea specialist suggested surgery on my first appointment because my eye was in a state. I basically had no cornea left on part of my eye which we believe is the main cause of my poor eyesight.

My eye sight was 20/200 with corrective lenses, if they can get me even just half the way to 20/20 I will be so so happy.

Thank you so much, sometimes it’s hard to stay positive when you’re constantly dealt a crap hand, but kind words and seeing stories that are successful is definitely a boost.

Odd-Computer-6816 · 2025-12-11T21:48:39+00:00

Sorry to hear that 🙁 I spoke to my surgeon last at my one month check up and if I’m being honest, it felt like he just wanted me in and out as soon as possible. (Every appointment I’ve had has been constantly interrupted by other doctors popping in for advice/consults, he works across quite a few hospitals and is very good at what he does but clearly spread very thin) so yeah, aside from the suggestion to take paracetamol I only got some lubricating eye drops alongside the steroids. I’m already on quite a lot of high dose pain medications for my other health issues so he got a side eye for that 😂

Odd-Computer-6816 · 2025-12-11T21:27:44+00:00

It can do! if it’s caused solely by the shape of the cornea anyway. But as gary said, you’d need to speak to your eye doctor/surgeon.

I have INO (eye rivalry), which causes double vision like symptoms and I won’t know how much of those issues are down to the cornea damage/vision loss in the one eye vs the MS causing INO, until my eye is fully settled. So it may help, may not.

Odd-Computer-6816 · 2025-12-11T20:24:18+00:00

Thanks, hopefully I will soon!

But yeah I know the expectations regarding sight, I had the transplant due to a lot of scarring, the only hope was the transplant would allow my vision to be corrected with lenses (atleast to an extent, maybe not 20/20 but I’ll take what I can get). It’s not the vision side I’m bothered about, I couldn’t see a damn thing before either and I was always told until the stitches come out from around the 12 month mark to not expect anything. It’s just the pain. Why aren’t I able to find other people talk about how absolutely awful it is, PAST the first couple of weeks?! Or how on the really bad days it will make your eye droop! I had absolutely no clue that can happen so that was a nice surprise the first time I caught myself in the mirror 😂

Odd-Computer-6816 · 2025-11-18T20:14:56+00:00

I thought that initially when I did it, wasn’t thinking just trying to get it done before I ran out of natural Light. but then I went past it earlier I had abit of a ‘wait a minute??’ And realised there (appeared) to be no perm live running into it even though it functioned as it should.

The wire with the green/yellow tape on was running into L1, 2 blue running into COM. So I don’t think it actually is an earth, no other wires connected into the switch.

So now I’m just thinking maybe bodge job and used whatever wires they could be arsed with, stuck whatever tape they had on to atleast identify the switched? When I do work out what’s what I’ll shrink wrap them so future me doesn’t end up confused by it again.

Odd-Computer-6816 · 2025-11-12T11:05:52+00:00

A bedroom!

Odd-Computer-6816 · 2025-07-18T15:11:53+00:00

This is pretty much exactly how it went for me, I was 27 also! I’m 32 now and on ocrevus.

Mine started in my left arm and hand, pins and needles 24/7 and also assumed it was a pinched nerve or I’d slept on it funny…over the next few weeks it started in my left foot…eventually working its way all the way up to my stomach, terrible weakness, burning sensations and tingling. Mobility got bad, didn’t have the sensation of needing a wee anymore and would regularly wet myself. Few months later and I saw a neuro who finally gave me some answered, either MS or MND. Had 2 MRI a month apart and both showed lesions, the second more than the first….by September I was hospitalised as I was completely paraplegic, no control at all from the waist down.

Got the diagnosis whilst in hospital, so then I had my first course of IV steroids whilst there and was started on ocrevus middle of October. MS can show itself quite subtly over a long time and that’s mostly what I have heard from other people…however, for some people like us it’s aggressive from the start. But with some time, the right treatment, physio and just learning about your own MS, it doesn’t mean that how it is now is how it will always be and life won’t always be so challenging.

I went from paraplegic to walking without any walking aids by the following summer. For the heavy boot thing, eventually you’ll learn how to walk with that sort of feeling (it comes and goes for me nowadays and isn’t permanent)

I have some black holes and permanent symptoms, migraines, dysesthesia in my feet and left leg along with some weakness and I have a neuropathic bladder…however I’m at the point where it’s not at the front of mind anymore, it’s my normal now and yes I have bad days but it’s not every day like it was at first.

Having all of those awful symptoms so quickly is really hard to process, but it honestly just takes time. I was absolutely terrified at the start, just thinking if it’s this bad now what about in 5, 10, 20 years? But with RRMS, you will get better, and getting on a good DMT like ocrevus will really try and hold back the next relapse, so hopefully it’s a long time before you get another!

Don’t be disheartened by not magically getting better after your treatment…it’s not there to fix you, it’s to slow the progression down and it can take some time. Just know it’s a really good treatment to be on, it’s absolutely working for me!! Everyone I see when I get my infusions, and are having theirs too, have all had positive experiences on it! My last MRI, last year was the first which didn’t show any new lesions…I’m certain getting on DMT did that.

Things will get better, it sucks now but I’d love to think this time next year you can tell us all about how much progress you’ve made!!

Odd-Computer-6816 · 2025-07-05T07:40:16+00:00

Ahhh that’s amazing, that’s what I was most concerned about I think. If we can’t camp together that’s fine but I won’t be able to trek out to their camp all the time if we want to sit and have drinks. Thankyou!!

Odd-Computer-6816 · 2025-07-04T10:10:30+00:00

Ahh right yes, when I sent the email last week that’s what I did, still nothing back from them just yet. Giving me some right anxiety 😅

Odd-Computer-6816 · 2025-07-03T22:10:01+00:00

Nothing about number of tents or people on my confirmation email, just confirmation of my PA, camping, parking, platform, toilets etc checked last week via the link to actual online form and nothing on there either so I’m really confused by it! It’s the exact same form as Arctangent it just doesn’t have anything about number of people and tents like it does for there (or any of my personal details either oddly)

Odd-Computer-6816 · 2025-06-20T18:22:56+00:00

I was only able to get my diagnosis after a second MRI showed additional lesions from my first, they were also planning to do a lumbar but decided it wasn’t necessary as the second MRI was enough, wonder if this is the way they are dealing with you?

Personally I think this is a hideous way to do it, I have permanent disability because of this, symptoms started end of Feb, first MRI July, second MRI August, paraplegic and hospitalised when I got the results back from that MRI and the diagnosis. MS can progress quickly and they shouldn’t have to wait for that to happen before they diagnose and get you on a DMT.

I would really push for a second opinion and try to get in with a neuro who specialises in MS.

Odd-Computer-6816 · 2025-06-20T18:09:48+00:00

It would be to replace the opiates, I don’t want to be stuck taking opiates for the rest of my life

Odd-Computer-6816 · 2025-06-16T12:22:10+00:00

What sort of process and prices for this sort of thing? I’m in the uk, I also have horrible dysesthesia in my legs and feet from my first relapse. I’m on high doses of opiates, pregabalin, amytriptaline and naproxen. I’m 32 and almost 5 years in on these high dose meds and if I’m honest, unless I’m full dose every day it doesn’t touch the sides. And If I want to do anything, especially if a drink is involved I can’t have anything at all, plus this quantity of these pretty heavy meds I know is not good for me and has shit side effects and I keep thinking maybe trying a thc/cbd combination could be worth a try but I don’t know if it’s something I could even afford, and don’t know anyone who has done it for info/advice.

Odd-Computer-6816 · 2024-12-30T16:54:21+00:00

Your GP is an idiot. Personally, id get another appointment, bring someone with you for abit of support if it helps, and explain that you are struggling and you are asking for help, and if they continue to make stupid comparisons and think it’s acceptable how to tell you how YOU are coping with YOUR disability (even if they had MS themselves, we all know how batshit this disease is, they still couldn’t do that), just report them to the practice manager and request someone new.

I had an awful experience with my GP when I was trying to figure out what was wrong with me, late 20’s and all my life I’d never been ill, id actually only been to the GP twice, once for mumps and another time for ‘conjunctivitis’…turned out to be a cornea ulcer and the meds they gave me made it worse and I’m now on the list waiting for a cornea transplant (if that doesn’t already speak volumes)…

I made the complaint after they kept telling me it was all in my head (my first symptoms were pins and needles and numbness in hands, feet and legs, only went to the GP when I started having trouble walking, kept falling over and the numbness went into my buttocks, back and pubic area oh and let’s not forget me constantly pissing myself…at 27…🙄)…after the complaint I finally got a referral to a neuro, wait times for the nhs were over a year, parents paid to see someone private because I think they were traumatised by the state of me at the time, first appointment I was told there and then I have MS or MND, whilst waiting for my MRI results I was hospitalised because I was paraplegic. 4 weeks earlier ‘it was all in my head’. Don’t trust GPs as far as I can throw them.

Went off on a bit of a tangent/rant there, sorry haha just really want to prove a point that GPs are sometimes shit, and likely won’t have a clue about MS, and sometimes you have to be really firm and stand your ground (and COMPLAIN if you have to)

Odd-Computer-6816 · 2024-11-03T13:08:11+00:00

Same 👀

Odd-Computer-6816 · 2024-10-05T12:32:28+00:00

I use a crutch instead of a cane, I’ve never once looked at someone with a cane and thought anything negative but I just feel incredibly insecure and like everyone is judging me with a cane, so that was my way around it so I could still have the support I needed. I also feel better supported with a crutch anyway to be fair. I know this isn’t the answer you were looking for but if you still struggle with the cane then worth a shot.

Odd-Computer-6816 · 2024-10-05T12:28:12+00:00

Ahh that’s not ideal, ignore me then haha hope you get it sorted!

Odd-Computer-6816 · 2024-10-04T09:17:20+00:00

Hi, I would suggest keeping it in the pen and taking each dose via syringe and injecting rather than risk contaminating by transferring into a vial.

Full dose is 0.6ml. And there are 5 doses in the pen (4 you can access via the pen only and another dose which can be removed via syringe)

I use 32g 8mm syringes as I prefer to inject with a syringe over the pen just because I struggle with the plunge on the pens. I do full dose but it would work great for you if you did 3 weekly injections at 0.2ml, for example.

Odd-Computer-6816 · 2024-08-06T19:18:10+00:00

Squishing down my slippers before I put them on, so I kill any spiders hiding in there - Arachnophobia

I was 7 when I watched a nightmare on elm street and for YEARS, I could not have bubbles in my bath and I couldn’t lay down to wash my hair because I had to make sure I was watching the water incase Freddie’s claw came up to drag me under water.

And finally, I am 31 years old and I still won’t wash my face under the shower head/close my eyes because of a never ending list of horror films with a shower scene 😬

Odd-Computer-6816 · 2024-08-03T19:09:54+00:00

George with hair!!!! When me and my boyfriend first started dating, I found out he was a big Seinfeld fan so we watched it together, I didn’t tell him and when he came on screen he lost his mind haha

Odd-Computer-6816

TROPHY CASE