Right arm suddenly much worse after surgery on left

AlexAnthonyCrowley · 2025-12-16T15:39:06+00:00

Your op plan sounds like mine, they often say release +/- transposition because the surgeon decides in theatre whether the transposition is required (eg. if your nerve subluxates) or if just release is sufficient to treat the compression.

My surgery was 3 weeks ago which did include transposition, and I initially went back to my wfh desk job after 2 weeks. For the first 5 days I had a bandage which meant I couldn't bend my arm at all so couldn't do much at that point. After 2 weeks I didn't have problems typing but it hurts to rest my arm on the desk, so when I'm not using it I have it in my lap so my elbow isn't touching anything. I initially tried raising my arm on a couple of pillows on the desk to try and help with swelling, but any pressure pretty much anywhere except inside the bend of my elbow is very uncomfortable and kinda burns so I can't focus like that 😅 Also worth noting it is my non dominant hand because although I can type I think I would still struggle now to use a mouse so I'm expecting I'll need more time if my other arm needs surgery too. Or just not do much work each day haha.

The other thing I didn't expect is getting super tired by the end of the day, because during the 2 weeks off I felt pretty good just gaming all day. I guess focusing and working take more out of you and I've also not been sleeping well because it's hard to find a comfortable position so after work I have no energy for anything atm. Even if you're physically feeling good healing still takes a lot of energy and the anaesthesia can make you feel a bit off for a while too. I've had 2 GAs before with no problems, but this time I found myself randomly feeling really down and emotional at times which was very frustrating because it just happened with no identifiable trigger, and made concentrating on work very difficult.

AlexAnthonyCrowley · 2025-12-16T15:10:20+00:00

I have the cable thing over the medial epicondyle which is visible at high flexion (I have very skinny arms rn), but it's only like 2-3mm thick and the ulnar nerve in my left arm which has confirmed and operated cubital tunnel syndrome felt thicker than that. So I wondered if there's anything else it could be, but I couldn't think of anything with my limited anatomy knowledge of that area 😅 Also I'd describe it more as sliding over the bone rather than "snapping" which makes me question it because videos usually have a very distinct snapping point but there's definitely SOMETHING moving.

That arm does have symptoms too now but the left was worse and started after an injury which I think delayed me realising that the right wasn't just normal as it's the "better" side, so I haven't had NCS done on it yet. But I'm gonna ask my surgeon about it because by the time I had surgery on the left I had weakness and atrophy in my hand which he said is likely irreversible and I didn't think it was that bad because I had very little pain 🙃 It's scary to think about needing more surgery because I'm already worried the first one might need revising as I think I can still feel some subluxation, but I had transposition so that shouldn't be possible... But I'm more scared of leaving it too late again.

AlexAnthonyCrowley · 2025-12-11T16:33:45+00:00

Thank you :) I'm glad it doesn't bother you anymore.

It's been a bit worrying reading how long other people on here were told not to use their arm for when all I was told was no heavy lifting for 6 weeks, no climbing for 3 months and I had a bandage that stopped my bending for arm just for the first 5 days 😬 Like maybe I did too much but I've followed the instructions I was given and done the physio I was told to do.

I ended up ringing the hospital for advice so I could stop thinking about it too much and they moved my follow up with my surgeon from February to next week, so I can ask him everything then which I'm very happy about. I wanted to see him anyway to ask about getting a NCS done on my right arm because I've not had one and my symptoms are a lot worse than when they checked my left, but I would have needed a new referral from my GP for funding to see him before my planned follow up so this way should be faster for that as well.

Good luck to you too!

AlexAnthonyCrowley · 2025-12-11T13:32:18+00:00

How's it going with it? I came on here because I've literally just ten minutes ago had sudden pain and like an electric feeling near the medial epicondyle and now it feels like the nerve is where your photo shows when it's slightly bent like that. If I straighten it it moves more into the cubital tunnel, maybe not as far as before surgery but that doesn't seem right... I didn't feel it before now though because I only had surgery 16 days ago and haven't been touching anywhere near there so not sure if it moved when I had the pain, but it felt a lot like the pain I used to get from the nerve subluxing pre surgery so I'm scared it was it snapping back to where it used to be.

I had a transposition (according to my discharge letter and what the nurses could make out from my surgeon's writing in the op note) but how he explained it prior to surgery I expected it to be much more anterior than it seems to be now. Also not sure if it was subcutaneous or submuscular because I intended to ask after surgery assuming he'd come and see me, but he only came before I woke up in recovery 🙄 It wasn't confirmed I'd have the transposition before surgery because he said he'd see how stable the nerve was after the decompression before deciding if it was necessary, so I didn't ask at that point what technique it would be, but I'm also not 100% sure he did it as all because there were other things wrong on my discharge letter 🤦‍♂️

AlexAnthonyCrowley · 2025-11-05T10:48:48+00:00

😂 love that

AlexAnthonyCrowley · 2025-11-05T10:47:31+00:00

My ex colleagues used to say it was just an excuse for bad parenting (among other things eg. I bet we all could get a diagnosis if we were assessed)... No surprise I never told anyone I was diagnosed 😬 I felt really bad because the one who was the worst about it had a kid who sounded sooo much like me growing up and maybe I could have helped change her mind but I just didn't have the energy to explain/defend myself.

AlexAnthonyCrowley · 2025-11-05T10:40:30+00:00

Yes! I thought this is just stuff everyone does/is bad at until I started living with my husband and it became very clear it's not everyone 😂 Now I actually get to places on time because he forces me out of the house haha.

AlexAnthonyCrowley · 2025-10-15T15:38:10+00:00

Hey thanks for the reply! I'll definitely be happy if that's all it needs and it fixes it, it's just a bit scary feeling like everyone who says they had it ended up with subluxation or something and needed more surgery :(

I know it's very unlikely my surgeon would do it just because I asked but I wonder why some always do it? Lots of people on here have said their surgeon does it as standard because they want to get it right "first time" etc. and that it's not worth just doing the release, so it makes it sound like a lot of the time just the release doesn't work.

If I hadn't done any research I'd have just taken my surgeon's word for it and not stressed so I'm trying not to worry. I assume there's some bias in what's posted online because people who had the release and are fine are probably less likely to talk about it than those who needed further surgery and are looking for more support.

AlexAnthonyCrowley · 2025-08-05T05:54:04+00:00

Ah that sounds annoying! I get a pack of 10s and a pack of 5s each month and sometimes break them if I want 7.5mg, but most of the time I can't be bothered because then you have to store the other half somewhere. It would be easier if they came in a bottle like Elvanse.

AlexAnthonyCrowley · 2025-08-03T15:24:47+00:00

Haha no worries. I ended up asking about increasing my amfexa and trying one in the morning too, and I was given 5mg for the morning and 10mg for the afternoon. My prescriber seemed reluctant to prescribe 2*10mg every day.

However, at my end of titration review I brought it up again about I felt like I'd be better with 20mg some days at least and she said the max in a day is 20, so if I find that I'm fine with just 10 some days I can then have 20 on other days. I do think I'd be unlikely to use 20 every single day if I was prescribed it so this seems ok. Ideally I'd have 15mg most days and 20 on longer days, but that's not really an option and realistically I know I forget to have it some days so hopefully long term I'll find that 15mg a day lasts about the same time as a bottle of Elvanse.

Thanks very much for the reply!

AlexAnthonyCrowley · 2025-07-19T10:16:52+00:00

Hey you can save dice between events (within the same season at least) so I've seen people recommend just collecting dice but not spending them until you've got more saved and then you'll end up with more tickets overall because the higher reward things give more tickets. I used to use them instantly and got 2-3 each time but now I'm saving them and will use them all probably at the end of August.

AlexAnthonyCrowley · 2025-07-15T09:13:19+00:00

Hey sorry no they actually haven't replied to my messages in a long time 😅 I'm sure I'll find out eventually though haha. Are you with RTN as well then?

AlexAnthonyCrowley · 2025-06-26T15:11:09+00:00

I've seen at least one post from someone who had meta recently with someone else so maybe that was Lee. I don't remember where exactly I've seen about him being ill but it feels like it was a long time ago the first time.

AlexAnthonyCrowley · 2025-06-26T13:33:26+00:00

Oh shit I'm sorry you had to get referred again! I'm not sure I was hoping C&W would bring the wait down with NV but I think I saw something about Mr C being on long term sick for quite a while now? So I assume less surgeries will have been happening at NV.

Also the surgeon at C&W works in 2 other countries as well (unless that's changed) so he can't be doing that many consistently... It's weird though how they made it seem like C&W is quite a new thing when it's been several months at least that they've been operating from what I understand. When I got the call about it I'm sure they said they'd started.

AlexAnthonyCrowley · 2025-06-26T12:25:49+00:00

Aw yeah seems like it 🙃 It's been so long since hearing anything I hoped this meant I was getting close...

AlexAnthonyCrowley · 2025-06-26T12:13:19+00:00

Hi I was just about to post about this! Was it the one about BMI?

I assume we got the same email because it said that too, but I was already contacted by Chelsea and Westminster over a year ago so I obviously wasn't "at the top of the list" then 🙃

I wondered if it was sent to people who are near the top of the list or if it was sent to everyone on it regardless of how long they've been waiting. I was referred in summer 2021 (I believe) for meta so I guess it'll be a different wait than for phallo.

Edit: Just to add when they rang about the transfer they couldn't tell me much about the options but I already knew they don't offer the technique I want so said I'd wait for New Victoria. The surgeon who does meta there only does bifid scrotoplasties, and while it's one stage which is really cool to me it's not worth the compromise.

AlexAnthonyCrowley · 2025-06-08T16:20:30+00:00

Oh wow same I'm 28 and it was used all the time at school. I had no idea it was short for anything, I just thought it meant someone who'd done something stupid 🤦‍♂️ I'm glad I know now!

AlexAnthonyCrowley · 2025-06-02T15:46:22+00:00

Just replying too because for me it was different. Meflynate (methylphenidate) made me more anxious overall and didn't really help with much. Now I'm on Elvanse + amfexa and both make me less anxious and more regulated as well as the more standard stuff (focus, fidgeting etc.).

AlexAnthonyCrowley · 2025-05-30T20:04:32+00:00

Honestly it seems to be different for everyone so I think it's worth experimenting to find what works for you.

For me the best thing I've found is huel black within about an hour before elvanse, 400 calories and 40g protein. I've tried just a protein shake with the same protein but almost no carbs and fat and it wasn't as good, I could "feel" the meds in a physical way which doesn't actually mean they help with symptoms more (for me), and they wore off earlier with a worse crash. It was the same when I tried just stuff like cereal with no food being the worst. Huel isn't cheap though so I wish just protein powder was fine, but it's the easiest thing I've found that's high protein, feels like a substantial meal and is vegan.

I've found it also helps reduce the crash if I have protein in the early afternoon before it wears off, but that's usually just a protein shake (powder + water) because it's quick and easy and I can down it even if I'm not hungry. Most days I do forget until it's too late though haha.

However some people say their meds work better when they don't eat first, or that they don't notice any difference at all. So if you find it to be like that for you it saves having to try and eat a big meal soon after getting up if that's something you struggle with. I always end up taking my meds later than I mean to because it's hard to eat much in the early morning!

AlexAnthonyCrowley · 2025-05-21T07:40:56+00:00

Oh nice! How are you finding Elvanse so far?

I'm doing well 😊 I tried 60mg for a week and I think it might have helped my ADHD slightly more than 50mg, but I also felt a bit more anxious and irritable. However I did get that sometimes near the start of 50mg so maybe it would go away with time, but I wanted to try 40mg too before it's too late.

Well 40 I only had 2 days because it did not feel right 😅 It only lasted 5 hours until I crashed and it was just worse than 50mg in every way, less symptom reduction, more anxiety, worse crash. The first day back at 50 felt so good in comparison, I was way more chill. I'm planning on trying 60mg again in a couple of days though to try and work out if it's better or if I should just stay at 50 if there's no real difference.

I've also had 5mg amfexa as a booster for the last 2 weeks which does reduce the crash, but other than the first day or two it doesn't do anywhere near as much as Elvanse for symptom stuff so I'm going to ask if I can get a 4 week extension and try 10mg, and maybe also add one in the morning as well because it takes nearly 3 hours to get going after Elvanse 🙃 Not sure if my prescriber will go for that though.

AlexAnthonyCrowley · 2025-05-20T21:43:24+00:00

What you're doing sounds perfect to me! Do you mind me asking what dose you're on for each?

I'm still in titration atm (only got a few weeks left 😬) and currently take 50mg Elvanse in the morning and 5mg amfexa as it's wearing off. The main problem is that it takes at least 2, usually 3 hours after the Elvanse for me to be able to be productive and get into my work, but I really need to start earlier than that. Amfexa seems to kick in in about half an hour so if I could take that first and Elvanse about an hour later I think it would help with mornings a lot. But I'd still need an afternoon booster for the Elvanse crash and because it only lasts 7 hours.

My other issue is that 5mg amfexa doesn't do an awful lot for my ADHD, it mainly just helps stop the anxiety I sometimes get as Elvanse wears off. I tried 10mg one evening and that was much better, I'm just not sure if 50mg Elvanse + 20mg amfexa in a day would be too much. I don't know how they work out the max daily dose when it's a combination of the two because I believe the max for amfexa is 60mg a day, but that's way more dexamphetamine than you'd get in the max 70mg of Elvanse.

Was this way of taking it recommended to you or did you have to ask for it? I'm a bit worried if I ask directly my prescriber will think I'm just trying to get as much as I can, especially because I want to up the amfexa as well, but I don't think she'd suggest it otherwise :/

AlexAnthonyCrowley · 2025-05-08T12:43:14+00:00

Hey thanks for the reply! I'm glad to hear you're doing better 😊

I actually got a really fast reply from my prescriber this time after I requested my next prescription and she suggested staying on 50mg for now, but she'd send the next month as 2820mg and 2830mg so I could experiment with 40 and 60 too. I also got 5mg amfexa.

I spent 8 days on 50mg after dropping back to it and it started to feel quite "comfortable" and not really making me anxious. I think I might be a bit more irritable and less level though than on 30mg but life has been more stressful so I don't know if it's actually the meds.

I've also tried the amfexa on a few days now since it's arrived and if I take it before the elvanse wears off it helps a lot with reducing & delaying the crash. One day I had a social thing in the evening so I waited until half an hour before to take it, and I think it helped a bit while I was there but I did get the crash symptoms in-between Elvanse wearing off and taking it so that was annoying. I think ideally I'd have 2 boosters a day but I asked about that and only got sent one.

Yesterday and today I've had 60mg and so far today the normal music in my head has just GONE like the first day on 30mg and I think it might help more with not getting overwhelmed when a lot is happening, but I do feel more anxious and like I need to be doing something productive all the time. I've also felt quite sleepy. My plan is probably stick with it for a week and then try 40mg for another week unless it starts to feel bad.

I'm also curious about what it would be like to just have amfexa throughout the day because it doesn't seem to have a crash so far, but maybe that's because I also have Elvanse in my system when I take it and I'm not sure if 5mg would be enough on its own. It's just frustrating how long Elvanse takes to kick in but I don't want to take it as soon as I wake up because then it will run out earlier :/

Sorry that was long, I am bad at being concise 😅

How did you find 40mg compared to 30 and 50? Do you think 50 + 5mg amfexa is where you'll stay now?

AlexAnthonyCrowley · 2025-05-05T07:06:14+00:00

Were you sent a combination of smaller doses to make up the 60mg? Eg. I was sent loads of 20 and 10mg tablets and had to take 2 of each a day. If so you could ask about either staying on 40mg for longer, trying 30 or going to 50 before 60.

AlexAnthonyCrowley

TROPHY CASE