Info before surgery, am I expecting too much?

[Confusedbeforesurgery]

I don't know if I'm being U, I don't think so but haven't been in this position before. Sorry for length, trying not to drip feed

Dd has had ongoing kidney/urinary issues for a few years. After a large number of infections she was referred for various scans and yearly ultrasounds to check growth of kidneys, as they were found to have scarring and reduced function.

2 years ago we were told she has a duplex kidney which might be giving her reflux, hence the infections. Her previous consultant was concerned about further scarring and said that any illness not clearly attributed to something else needed a dip test as her infections were sometimes very low symptom until full blown, and once we'd even gone for a check up with him and he asked for a sample just for records, and found she actually had an infection and the only "symptom" dd had was a back pain 2 days before which had gone.

So at the end of last year we had an a appointment with a specialist consultant (one of her team, at least) who said as she's not had an infection in the last year they're going to leave things as they are. I told him she had in fact had at least 3 instances where she'd felt horrendous, same side pain, temperature, feeling sick, had dip tests which showed infection and been treated! He said when cultured, they didn't show infection so it must have been something else. No idea what I'm meant to make of that. The symptoms were the same as any time we've been told she had an infection, so if not uti's then shouldn't we have been informed?

So he said he would talk to the consultant quickly. Came back and said "ok, we'll do a cystoscopy which will make the tube smaller so urine can't come back up. Will that make you happy?" I wasn't really happy with the way he said it but I said ok I guess so, if that's what the scans said the issue is and that would be helpful. He said it would be booked in due course, which I know means it would be some months.

So to today, I had a call to schedule her surgery for later this month. Aibu to have expected someone to tell us what exactly it would be (beyond making a tube smaller as above), risks/recovery, etc, before booking surgery? The lady doing the booking said we could ask on the day and cancel if we don't want to do it but that's such a waste of everyone's time and I definitely wouldn't want to do that. I'm sure we'll want to go ahead, but would really like to be more informed. dd is 12 and will be anxious anyway, it won't help that I don't have any answers. Consultants aren't the easiest people to get hold of, understandably, so I'm not sure how to go about finding out, beyond google of course, as there is more than one type of cystoscopy.

Also I realise I probably am a bit U because I didn't ask further at the time, but I stupidly assumed that as I had to ask him to repeat the name of the surgery, it would have been clear we had no idea what it was. I do admit to being a bit taken aback at the time and trying to calm dd when surgery was mentioned so wasn't quite on top of my game, as it were.

Don't google. Ring the consultants secretary or the waiting list people - ask for an appt to discuss things. Ideally it should have been discussed at the last appt, I.e. Risks vs benefits, expectations (day case, etc).

I occasionally see people before their op dates who are nervous or alternatively they've been booked by someone else and we want to meet to go over what their expectations are. I'm not urology though.

And, we were due a follow up for this week which has been cancelled by the consultant due to the surgery being booked, so I would have asked then.

This isn't your issue though - it's the surgeon. The "would that make you happy" would piss me off tbh and it's not something I'd say to a patient, and definitely not to a child's mom.

Moreisnnogedag oh I can request via their secretary? I didn't realise, thank you.

Ha, yes exactly, I kind of thought what so you're doing surgery to please me? It made no sense to say.

Your surgeon is flying pretty close to breaking guidelines on consenting, where it's not best practice to do that level of discussion on the day of the procedure. Honestly ring the secretary and ask for an appt

My littlest DS had surgery last year and I found I got far more info from other parents than from the hospital. They didn’t tell me certain things like how distressing it was to watch them have the anaesthetic as they thrash around. Fortunately a friend warned me. They also did the surgery pretty much purely on my description of DSs symptoms which was scary.

Just to say as well, I have a duplex kidney with scarring and had repeated problems with it until the second year of secondary so about 12, and then after that it’s been fine. I was warned that pregnancy might cause problems, but it hasn’t. Not sure if I was just very lucky or as I grew the problem just largely resolved itself.

Well our secretaries can't actually physically book the appt but instead email the appt people who then overbook our clinics. It's not an unusual request.

Sothisisspring gosh well you'd hope they knew something more about your ds than they let on! You wouldn't think there's money to throw around on a parent's say so, even if they may be correct, you know?

Yes I heard it can be something you grow out of - the uti's obviously not the duplex kidney, maybe that's why they've waited so long to see.

Moreisnnogedag overbooked clinics must be a nightmare. You sound understanding about it all though so thank you, whatever capacity your job is there I'm sure you do it with compassion.

I've called to ask for an appointment to discuss, and by the amount of questions and disbelief I got for not knowing surgery details I can clearly see something should have been explained further by now. It was almost like we it was our fault for agreeing to surgery without knowing anything about it - well I didn't know it would be so abruptly arranged and that the appointment that was booked months ago for last week would be cancelled last minute!

The lady I spoke to is going to arrange for someone to call me but I'm thinking now this will just be to literally explain over the phone rather than make an appointment. Not sure how I feel about that, I get nervous on the phone and was hoping for a proper conversation with dh at least but will have to wait till they call.

My son has reflux and kidney scarring as well as other bladder issues. This was discovered when i was pregnant.

He has had many infections. Sometimes with the same issue. Culture is negative but dip was positive. Usually in his case it just drags on and on until weeks later a uti with a positive culture is discovered.

Ive found sometimes its very hard to get info about procedures during the consultations and then even if i do try and google his specific issues dont seem to be that common.

I have found great support on private fb groups. If you search for vesciocoureteral reflux support group although this does have a lot of American posters so sometimes things are a bit different

Theres also the breakaway foundation, and kdars for kids which are a uk based charities with fb pages where you can gain a lot of support and find out other parents experiences of these types of symptoms and operations.

Its daunting but the best thing you can do for your daughter is what you have already done. Advocate for her to protect her kidney function and try to minimise any further renal scarring.

Hi OP maybe I can be of some help.
Quite often with a duplex kidney system, part of the issue is that the opening from the ureter (not urethra) into the bladder is wider than normal, allowing urine back up into the kidney (reflux). To check this, a cystoscopy is performed, and if the opening is seen to be too big, a minor procedure is performed, called a 'sting', or 'deflux injections' which is basically injecting a bulking agent around the opening to make it smaller. It's a fairly minor daycare procedure. My daughter had this successfully. It can be performed more that once if needed. If it doesn't work, actual surgery may be needed.
This might be the procedure that's been recommended and if it is, is not too worrying at all.
Good luck

Ducksarsehead thank you for those suggestions I'll have a look. I agree I also found it difficult to find information about specific kidney issues.

Oh they make you wait for a culture? That seems unfair given there are known issues and you're not dip testing for the sake of it.

InSpaceNooneCanHearYouScream that's interesting - I guess so a mag3 scan shows whether or not there's reflux and a cystoscopy would find out why and hopefully remedy it? I'm glad to hear it went well for your daughter. Can I ask, as it seems quite an unpleasant procedure, did your daughter have a general anaesthetic for it?

Has she not had a mag3 scan yet? Has she had a voiding cystourthrogram? As far as i was aware these needed to be carried out to grade the level of VUR.

The cystoscopy my son had was done to see if he had a structural problem causing the urine to flow back into his kidneys. He had this at age 3 after having had the other 2 tests at birth/3months and then repeated over the next few years.

He did not get the deflux during the cystoscopy as his problem was due to bladder pressure and massive urine retention. He had it under general anaesthetic. I would assume it would be the same for other children? I have had it done as an adult and it really wasnt painful. But a child would prob not stay still which would be the issue. My son had a suprapubic cath placed at that time and was only in overnight so I assume the recovery time would be hopefully pretty quick.

With the utis and his medical history his gp will not prescribe antibiotics. We always get sent to a&e, here its a bit of a lucky dip to see if you will get a general a&e dr who wont prescribe as it needs a culture and hes "too well" or a member of the renal team who know his background, pain threshold and personality and will usually admit for further tests. We have been to a&e 8x in a row before he was admitted for iv antiobotics. But he does have quite reduced kidney function and other bladder/bowel issues so things may not be quite the same for your daughter.

Mag3 and DMSA are both scans to show kidney function/scarring. If a voiding Mag3 can also be done, this CAN show reflux but not always. The definitive test for reflux is MCUG -micturating cystourethrogram ( also called voiding cystourethrogram as per poster above) . I believe reflux cannot be ruled out without MCUG.

Yes the cystoscopy was under GA. As far as I am aware they always are.

Hmm she's had the mag3, that was last year. Prior to that she's had a dmsa and many ultrasounds but I've just googled the mcug and she's definitely not had that one.

Ducksarsehead yes I've always found a&e or walk in centre to be pot luck in terms of treatment, I really try not to use them unless it's come on really strong and we literally can't find a regular gp. It's awful to have them unwell with it though when you know the implications of further infections. It shouldn't have to get to the point where iv antibiotics are needed, that's such a shame. Dd does have reduced function but it apparently has slightly improved.

InSpaceNooneCanHearYouScream I do wonder why they haven't tried an MCUG then really but all the jargon (scarring on poles??) sometimes goes right over my head.

Thank you both for the information you've given, it's been really helpful.

Well I suppose it will depend on various factors including age. My daughter's duplex kidney was found by ultrasound when I was pregnant with her, so she was closely monitored, had Mag3 and DMSA when she was a few months old, and then regular ones free that, was on prophylactic antibiotics from birth till age 5, had MCUG at about 6 months old, then had the cystoscopy and deflux when she was 5 as she started getting UTI's. No further problems since and she's ten now. Still monitored with ultrasounds every 2 years plus yearly consultation with paws urologist and paediatrician.
Maybe ask the specialist secretary to find out why she hasn't had an MCUG?

Regular ones AFTER that, that should read

Ugh! PAED urologist

A mag3 will identify the presence of reflux as well as providing information on the function of the kidneys, uptake of the isotope in the kidneys, and excretion into the bladder. The mcug doesn’t give renal function, it’s more about the bladder.

Hi all, I hope your all ok.

Hubby has PKD which I know is different but we've got experience with a total idiot of a renal consultant who countermands every choice his main consultant makes and has led to major issues and cancelled procedures.

You consultant has a duty of care to ensure parents/patients are fully aware of what is going on and if they fail to do so they are in breach of guidelines and their licence to practice safely. You defo need a face to face appointment as he sounds incompetent and would be great support for yourself to have someone there who will go for his jugular if needed.

Best wishes for all

Confused that's kind of you to say. I'm a surgeon in a (very) different speciality so things aren't always the same. If you're not happy with a phone call say so. It's not a great method to consent tbh. Could you write down that sentence on a notepad or something when they call so you don't get flustered - "I'm sorry but I'd appreciate a face to face to discuss this prior to my daughters surgery" and repeat ad nauseum. Also write a list of questions out before you go - that way you won't be kicking yourself as soon as you step out the clinic door!

Oh my gosh well they just called to say someone tried to phone me yesterday evening to talk about it (someone did but my phone froze and I couldn't answer, and the number didn't accept calls), I said I'd actually been hoping for an appointment. The lady said "well that won't happen" very matter of factly, and continued with "the lady who tried to call left a note to say she is on leave now and will try again on monday so try to answer your phone".

I just said thanks for letting me know. I think we'll just cancel now and and rebook once we've had chance to talk to someone properly, I think that's quite an uncaring attitude to be fair. She may be right that there's no appointment time between now and then but....ah I don't know, maybe she's having a bad morning.