Orchidopexy for undescended testicle at 3.5 years old - any advice?

[WoolyMammoth55]

Hi all,

Our DS wasn't flagged for undescended testicles at any of his infant checks but I realised something was "weird" down there about a year ago. Covid delays kicked in just before first op was scheduled so we've been on hold for ages...

His new surgery date is 22nd Sept and I'm really worried about a few things:

• firstly about how to prepare him that it's going to hurt, without terrifying him so much that he won't want to go to the hospital? I feel like if I don't say it will hurt he might not trust me again afterwards :(
• secondly about the risks - urologist we saw in person was actually v reassuring about cancer and fertility risks but the more I read the more scared I feel.
• thirdly (linked) about recovery - my understanding is that straddling things, like riding a bike or going on the seesaw, are massive no-nos for 6-8 months afterwards to protect the testicle. That if they do occur they can lead to the testicle dying even a few months after a successful op!

Anyone had a DS go through this at a similar age and can offer any advice or reassurance? I'd be hugely grateful - Dr Google is definitely giving me more fear, not less!!

Thanks

Bump please :)

My son had this (bilateral) at 3.5, a good few years ago. We weren't given any advice regarding your third area of enquiry, so can't help there, but the recovery was quick, and he healed physically very quickly.
My DS had only just successfully potty trained in the day so I actually put him back in nappies for a week for the extra cushioning, and to protect his swollen testes. If your ds has been reliably trained for a while that won't be an option really, so maybe a squishy cushion for him to sit on? (The neck cushions for the car , the type filled with tiny polystyrene beads, could be ideal, just cheap one from Poundland type shop).
Second point- we were told pre-op that once he reached puberty he would have to regularly check himself for lumps to avoid testicular cancer, as the risks are slightly elevated by having had his testes inside his body (and thus warm) for so long. (Like you, DS had been fine at checks, but I didn't realise until he had an injury from a trike at about 2.10
Your first point is going to be hardest. I cannot lie, DS was in pain when he came round from the sedation. Looking back, I don't think he had realised at all that it would hurt
He has a unusually high pain threshold, but he howled like an injured animal when he woke I'm sorry, but you need to be prepared. The pain reduced fairly quickly though, and after the day of the op, he had ibuprofen next day, but said it didn't hurt any more. The swelling went down in a few days.
He still has his little scars (it was keyhole surgery, so they go in through navel, scrotum and groin, five holes) and he's now 11.5
What helped him heal emotionally was that he had another op four months later for grommets, which of course had no pain at all...and helped him understand that some procedures are more painful than others. Probably not what you want though, best to prepare him a little that it's going to hurt, but not too.much as you don't want him scared/panicking about the op.
To put him to.sleep, they put numbing cream on his hands, then I had to hold him still on my knee while they put in the cannula and pushed the anaesthetic in- make sure you don't drop him when he goes, it's very sudden!

He's absolutely fine about the whole thing now, barely remembers it tbh, but he knows he's going to have to check himself. I'm expecting some form of communication from the hospital about that in the next six to twelve months tbh.

Thanks @MagnusMama that's really useful info and much appreciated.

Just wondered if anyone else has any experience of this to share? TIA

Bumping - anyone??

We weren’t given the straddling advice either. DS had this done over 10 years ago at age 5/6. Was 2 separate ops. So I did worry that the first one would put him off the second one but the recovery, including pain, was very manageable for him after the first one. Had one incident post surgery when I had to take him to A&E in the middle of the night due to pain but if he hadn’t been post surgery I wouldn’t have taken him iyswim.
I was hyper vigilant - if it had happened at a random time I wouldn’t have been anywhere near A&E for the level of pain he had.

Posting to come back later... DS1 has had 3 ops....

Hi @VenetoResident, love to hear your advice when you have time

@WoolyMammoth55

Just reading your thread my son 26 months is having his op on 24th September. (just one side). I've been reading through the paperwork tonight waiting for pre op appt so not discussed fertility really.

At this stage I'm more worried about the covid test he has to have beforehand.

My son had this op last year aged 7. As others have said, it was painful immediately after the op, but not unbearable - they did say he could have morphine if needed but within an hour or so it was fine with just calpol.
The advice we were given was no bike riding for 4-6 wks I think (not months!!) but this was more to do with potential discomfort than damage.

Hi all just making notes to ask at pre op appt.

What would you want to know?

Hi ladies - sorry I somehow missed the last few posts - thanks @EleanorElena for the info, has the last year been ok for your son? Was the operation successful?

I'm bricking it now that it's a few days away :( He's been good about it so far - NOT looking forward to the Covid test though, swab needs to be on his tonsils for 15 seconds, whaaaaat? HE'S THREE FFS!!

But yes mostly I'm worried about his pain afterwards, and then his medium and lont-term recovery.

If anyone can offer any reassuring stories (or actually just any advice based on experience) then it would be gratefully received

Three days left to prepare him and me for this operation!! :(

Anyone any advice or experience to share? Thanks in advance x

Hi @WoolyMammoth55 sorry no advice really I just keep saying we're going to see doctor man and he's going to fix your winky
just so he knows it's coming, but I'm a couple of days behind you, have you had your covid test yet?

Did you do it or did a nurse do it?

Oh god I'm seriously scared for him now :( Wondering things like do I take a bag of frozen peas for him to sit on for the 1.5h drive home?? Would still be grateful for anyone's thoughts.

I've actually decided to call the urology bookings team tomorrow and try to get more info from them, bc I feel so underprepared!

@lancslass17 As to Covid swabs - BOTH, annoyingly! They initially told me they'd accept a postal test result as we're far from the hospital, so I got myself organised and swabbed him myself last Tuesday, 7 days before the op - he hated it, gagged and cried :( Then we got the negative result on Friday and I called to let them know, only to be told that the hospital in fact only accept swabs taken within 72 hours of the operation so it was too old...

3 hours round trip today to drive him down there, ugh. It was a rancid drive-through tent set up which was all dark and scared him, but they eventually called a lovely paediatric nurse to do it who had good technique and he did gag again but no tears. Good luck, it's not fun!!

Just panicking wildly really and praying it'll be ok

@WoolyMammoth55

for today, it will soon be over and you can focus on getting him better x

@WoolyMammoth55 how did it go?

Hi @lancslass17, sorry for slow reply - been a bit distracted!!!

It was actually fine. Hope yours will be too!

Blow-by-blow: so we were there at 7:30 for the consultant chats, weight and height, anaesthetist chat etc. Only 3 patients that day due to Covid distancing, instead of 6 normally. We were first as he was the youngest.

I made the decision not to tell him it was going to hurt a lot. Obviously so different for everyone! But he wasn't worried or phased by anything, was enjoying the toys etc until about 9:15 when they came and asked me to strip him for the surgical gown and take him down. He did get scared and clingy then, especially once we got to the day surgery room and there was a big team there, all masked up - they tried to put me in an apron and couldn't get him off me to get the arms on!! So I think for us it was the right call to just say it was an adventure to make his peepee better...

They couldn't get a cannula into any of his hand veins (chubby little hands!) so it had to be gas and air to knock him out, which was tough because he was 90% asleep but sort of physically fighting to get the mask off... I did blub a bit then but they had been so great, so I knew I could really trust them. That's when I gave him a kiss and left.

Then it got quite nerve-wracking because they had said in the morning that it would be 45mins to an hour, but it was actually a full hour and a half before they got me - apparently no complications in the surgery, just took them half an hour to get the needle into his hand! :( But then just as I was getting really worried the surgeon came out to debrief us and a nurse came to get me to go to him in recovery.

Recovery was the worst bit. He was, as @MagnusMama said, howling like a wounded animal. Really hysterical crying, mostly asleep but wild and writhing and heart-breaking. I managed to cuddle him and soothe him a bit but it wasn't til he was a bit more awake that he could calm himself... I'd say 15 full minutes of crazy, can't breathe crying and sobbing :( Finally got him to recognise that I had a bottle of milk for him (his ultimate best thing in life and a rare treat these days) but even then, they had moved us back up to the ward and the nurses there had turned the lights down before he really calmed down.

But the amazing thing was that after that, it only took him about 45 minutes to ask me to get him dressed so he could go and play! The brilliant thing about keyhole surgery is that there's just a plaster on his pelvis, no dressing on the testicle at all, and so I think in a weird way his "surgery" pain is quite minimal... I'd say the tube in the back of his hand was hurting almost as much as the stitches?? They couldn't take that out until he'd drunk, eaten something and done a wee, but from waking up hysterical, it only took him about 2 and a half hours to tick all that off the list. Then they took the cannula out and we were off home again at about 1:45pm.

He slept brilliantly last night and has been good as gold today, lots of wandering about with a funny wide-legged walk like a cowboy :) but very cheery, singing to himself like normal and lots of playing just like any normal day. His balls are bruised and swollen but he's peeing and pooping, eating and drinking just like normal and I think he's on the way to a good recovery already.

The surgeon was very optimistic about stuff, will review him in 6-8 months. I've obviously not got much clarity about the long-term issues but am hopeful. Really wish you all the best for tomorrow, will be thinking of you

Oh bless him. My DS had the same surgery, but at 11 months, which in hindsight was a lot easier, especially since he wasn't walking at that point and was very much still in nappies. His issue was picked up at his 3 day check, although initially drs thought it was a hernia, it turned out it was a retracted testicle.

When he woke up from the surgery he cried for a while, but because he was so little I just got on the bed with him, and wrapped him up for a big cuddle and he calmed down eventually. He's 2 yrs 9 months now, and you can barely see the scar he has, they made a small incision in the crease of his groin, and put a couple of stitches on his scrotum, which all healed incredibly quickly.

In terms of future care, the consultant advised us that he'd need a check up in six months from the surgery, which he passed with flying colours. He also advised that he'd need a follow up check when he gets to aboout 6 years old, to make sure everything is still good. He advised us that fertility was unlikely to be significantly affected, and that was that really. Incidentally my brother had the same surgery at about 3-4 years old, and now has two lovely kids, so anecdotally, no impact on fertility there!

@WoolyMammoth55

Just wanted to say thanks for taking the time for blow by blow it really helped me and stopped me panicking when he was gone for over an hour and not be shocked by the fight with gas and the screaming after. He's is doing well just hurts to pee now first pee was agony I almost took him to A&E now he just whimpers.

@lancslass17 you're welcome lovely!

How's your boy doing now? Did the peeing pain ease up quickly?

We are now 9 days post-op (Tuesday to following Thursday) and I'd say he's 99% back to normal. The incision on the lower tummy/upper groin has healed brilliantly - it was a bit longer than I expected, about an inch, but looks like there'll be hardly any scar. It was covered in a plaster which fell off in the bath last night and it's really tidy and I'm not covering it today.

The tiny cut on his testicle still has the loose threads of dissolvable stitches visible, but the bruising and swelling is really all gone now (I've been giving arnica in case it would help!) and he's not complaining when he pulls his trousers up and down any longer. We haven't given any Calpol or Nurofen for the past 2 days and he hasn't asked for any and has slept well.

All in all, looking back I think the aftermath was much, much better than I'd hoped! He really has seemed to take it in his stride (pun?) :) and although I've banned the bike, trike and see-saw until after Christmas that's me being cautious more than anything.

Hope you're finding the same Xx

Hi @WoolyMammoth55

The first few days he was in agony when weeing I ended up taking him back to A&E on Sunday but they said normal. But Monday we turned a massive corner like you say now he is 99% normal he is aware of when he needs a wee which has meant we have started using the potty ( nice bonus there). Took his bandage of yesterday and sounds exactly same nice and clean, still has dissolvable stictches in but swelling all gone now ( that was a shock), he has still been having Calpol but not had any so far today and seems fine.

@WoolyMammoth55 your step by step post was so helpful thank you❤️ My 13 month old might need this procedure in the next few months as 1 of his testies has not dropped. I'm so scared for him.

He came in to the world being resuscitated after an emergency c section & was in an incubator for a few days that was scary enough but this is terrifying me just as much & brings me to tears whenever I think about it. Especially his tiny little body going limp & lifeless from the anaesthetic.😢

The training consultant who referred us said they would put him under anaesthetic then feel around to see if they can feel it & if not they will put a camera in to look for it. I don't think she was very experienced as she was working under the consultant.🤔

I just wanted to ask did your little one have this or did they do an ultrasound because to me an ultrasound sounds like the better way to check if he actually has a second testicle in the first place before any procedure is done.

Also probably a silly question but as he's so young will they let me stay with him during the procedure in the operating theatre, I just can't bare to be without him for even a second.

Will they let myself & my husband stay with him over night if needed & through all the prep etc? Because of covid I'm hoping they haven't restricted it to 1 parent.😷

Do I need to take food or drinks for him?🍼

If anyone can answer any of my questions it would be greatly appreciated, I'm going out of my mind thinking about it all & making lists & reading up on it all. 😔

Hey lovely @Penguinmuma, so sorry for your tough start with bub and now this - it's a lot for you and your little one

From my POV obvs we did not have to have any invasive procedure to diagnose the problem. My DS just had a physical exam from the consultant which was the diagnosis - he was able to physically feel the wayward testicle in my son's groin with his fingers. But my boy was older, over 2.5 yo at that point - so maybe it's harder for them with your little one? They definitely don't want to do any surgeries that aren't necessary so my hunch is that this one probably is... You can obvs request an ultrasound but there is probably a reason they didn't suggest it. But you should make sure you understand their reasoning before you give consent, I think.

I don't think they'll let you stay with him in the theatre, I wasn't allowed. I think it's too distressing for mums, and potentially it's distracting for them to be worried about how you're doing when they need to focus on your son. But again, you could always ask.

We were one parent only due to Covid, and that was in Sept so between lockdowns... But all the hospitals have different rules so that one might be flexible.

I do think if they needed to keep him overnight you would be allowed to stay - they only asked me to leave him for the op, no other time. But it's very likely to be a day procedure like ours, especially with him being so little.

I did take snacks and milk for my son, but he wasn't super hungry with all the medication. But worth it to have things that will tempt him if they need him to eat before you can go home (which was the case for us).

To be honest I would try not to worry too much about the details just now, given that it's a few months away. You just never know with the vaccines and things what's going to have changed by then - maybe things will be loads better!

One thing I will say is that if I'd have the choice between my son's operation at 3.5 yo or 13 months, I'd have chosen for him to be your son's age. The younger the better in terms of them not having a lot of fear, not a lot of understanding about what's happening. I think my boy will remember what happened and yours won't, which I think is better. Also the long-term risks are less when they have it done littler too. So there are some real positives to your situation - try to focus on those if you can.

Best of luck!

@WoolyMammoth55

Hopefully your little one won't remember, he's still very young so hopefully it will fade away in time 🤞🏼

That's a brilliant idea to bring him snacks etc to encourage him to eat, thanks. He's got these 2 kiddy snacks that he absolutely loves & he loves raspberries he goes mad with excitement when he sees them 😊

We were referred in the beguinning of October & I haven't heard anything back since, I have been avoiding reading about it & chasing it up as I thought it would buy us some time for it to descend naturally, but I've started reading up on it & it said best to get it done when they are younger as risks are less in the future just like you said, & it also said its very unlikely to descend by itself now. So I'm going to have to suck it up & deal with it now 😔☹️

& also as you mentioned their pain threshold & what they remember becomes worse as they grow older. His first immunisations easy peasy he cried for a second then went back to sleep. Second he cried a few more seconds, 3rd he cried when he saw the nurse all the way until after his immunisations.

I don't understand why they can't allow both parents in. I know it's because of the virus but we all live in the same house. One parent will need the other for support, & my little one likes to have both of us to cuddle when he is poorly 🥰😕
Hopefully the situation will change by then as you said & I will try to concentrate on the positives rather then the negatives.

It's so nice to have support from other mums on here, I always come on here to read up on info but last night I joined up after reading your entry.

Did they put a catheter in when your little one had it done?