Urology dynamic tests : Hello Please can someone give... - ERIC

ERIC

8,726 members2,906 posts

Urology dynamic tests

Jayjay-1 profile image
60 Replies

Hello

Please can someone give me a link or explain how this would be done - we are now on the waiting list for Bristol children’s hospital. Thanks in advance

Written by
Jayjay-1 profile image
Jayjay-1
To view profiles and participate in discussions please or .
60 Replies
fuzzalert profile image
fuzzalert

Before I answer how this test was carried out for my son, do you know if your child is going under anaesthetic or just using gas and air whisky they set it up?

fuzzalert profile image
fuzzalert

*whilst they set it up, not whiskey!!!!

Jayjay-1 profile image
Jayjay-1 in reply to fuzzalert

They haven’t said anything yet that’s why I was asking !!! I am worrying and I googled it but wasn’t sure if I was reading the right stuff!!! Whiskey would of been interesting 😉

Jayjay-1 profile image
Jayjay-1

Actually thinking about it I think the consultant said no anaesthetic but a overnight stay.

fuzzalert profile image
fuzzalert

I would suggest phoning the consultants secretary and asking them about the procedure. Most hospitals should provide you with an information sheet about the procedure.

We were told the waiting list to have urodynamics test with anaesthetic was longer. So opted for gas and air/Entinox

My son was given the gas and air and a very small tube is inserted , think he was more shocked than anything as I hadn’t explain the details of what was about to happen The urology nurses are lovely and explain things to kids

He was awake through the process, sat in a hospital gown on a toilet style chair

the tube down below sends liquid into their bladder, fills it up And I think when he peed the toilet below has sensors in that’s connected to a machine where their measure contractions There was also a radiologist in the room who took x rays of my sons bladder which would show any reflux I think The whole process took a few hours

Sorry that’s so vague but I did remember asking your same Q last year on this forum and I think someone replied saying they’re child was sedated and the tests were done that way so less stressful for the child so I’d definitely recommend contacting the hospital to find out which method they’re planning

I hope that helps somewhat?!

fuzzalert profile image
fuzzalert

I think we’ve chatted before. Is your child still on the same medication?

I’m still waiting for the NHS funding committee to authorise my sons funding to receive PTNS treatment. If they don’t then I have no idea what is left as the Vesicare just isn’t working!!

Jayjay-1 profile image
Jayjay-1 in reply to fuzzalert

Hi

Yes we have - thank you for replies again - great help and thank you . It was the consultant last appointment and was very rushed as he was already 2 hours over and he was abrupt but I think he was exhausted from his day. We asked questions but he didn’t really answer! I will phone hospital like you suggested.

That PTNS was actually mentioned at the end of our appointment as a possibility, depending on cause, of treatment.

So they have agree to fund this ? How long have you been waiting to find out? I hope they do for you !!! How frustrating!!!

fuzzalert profile image
fuzzalert

We’ve been waiting since last autumn. This committee meet quarterly I think. The GP has to produce a lengthy document along with supporting evidence say from consultants or urology nurses. Should’ve had an answer by January but they then requested an ‘impact statement’ on how it affects his daily life along with up to date urine charts. Shame we didn’t know this smirk start with! They’re meeting end of this month so we shall see!

I haven’t told my son as don’t want to dangle the carrot!

I asked consultant what’s the next option after he’s been in double dose Vesicare and she said self catheterising which sounds quite traumatic.

Fingers crossed you don’t have to wait too long for the urodynamics test. Even though it’s uncomfortable for them it’s actually a relief that others have actually witnessed the truth and what I’ve been trying to describe for years and years!! (No warning he need to wee, it’s just comes flying out!!)

Jayjay-1 profile image
Jayjay-1

I am keen to get the testing done - I am at my wits end with it all. I know I am not the only one but the lack of understanding and taboo nature of this problem really starting to effect the family- that’s on top of trying to manage it.

For goodness sake a impact statement- I bet you wanted to scream at that point!!!!!

fuzzalert profile image
fuzzalert

Just wondered if you managed to find out anymore details about the urodynamics test?

Good news this end, the funding for 3 month treatment plan of PTNS has been granted based on expetional circumstances regarding the urgency my son has on his daily life, so all of those chart AND the ‘impact statement’ have finally paid off!!!

Now all he needs of for the treatment to start and for it to make a difference

Fingers crossed!

Jayjay-1 profile image
Jayjay-1 in reply to fuzzalert

Oh my goodness well done!!!!!!!!!!!!!!! Fantastic news ! It paid off jumping through all those darn hoops ! I hope you get started soon. Please keep me posted - can I ask which area you are in?

We have got another letter which now details the actual tests - cysrourethroscopy insertion suprapubic line followed by video urodynamics . Hopefully spelling correct . Not got the actual appointment yet.. just a copy in letter from consultant to urology requesting test.

I wish things would speed up! I am sure you think the same.

Please keep me up dated as dearly love to know how you the ptns works out. I have everything crossed.

Jayjay-1 profile image
Jayjay-1 in reply to Jayjay-1

Ps I was wondering the area if it was the the south west that I would have the same battle should we need to go down the same road!

fuzzalert profile image
fuzzalert

We’re Oxfordshire area so I’m guessing things won’t be exactly the same set up regarding waiting times or what’s on offer to kids, no continuity throughout the country, that’s what I’ve discovered since joining this forum!

Either way I’m just grateful the funding has been signed off, just waiting for it to start, was hoping for it to run over the summer hols so it doesn’t impact too much on him missing school!

Have you had your appointment letter through? It can be quite a long day so Defo pack the biggest bag of snacks and any games/distractions you can!

Jayjay-1 profile image
Jayjay-1 in reply to fuzzalert

Hi

Yes you are right absolutely no continuity throughout the country!!

Please keep us updated how it goes - I am sincerely wish you all the best.

No appointment letter through yet....,so frustrating that we are not even started the process.

It’s helpful on this forum to not feel so isolated with this!!

fuzzalert profile image
fuzzalert

Did you get an appointment letter through yet?

Maybe worth chasing

So my son starts his PTNS treatment this week. Been told they use fine needle like an acupuncture one so am taking electronic gadgets to distract (me more than him!!!)

Will start a new post once things get going

Jayjay-1 profile image
Jayjay-1 in reply to fuzzalert

Hi

Just wondering how you and your son are finding the treatment- thinking of you

fuzzalert profile image
fuzzalert in reply to Jayjay-1

It’s been quite traumatic!! First session he cried and screamed so much and refused to have it done. Luckily they gave him an appointment for the next day and his dad took him and minus his little sister (who also found it traumatic because she hated seeing her brother upset!)

They use acupuncture needles and gave us some to take home for him to see how fine they were. I kept saying they’re like cats whiskers, I even got to major bribery stage but nothing worked, he just kept saying it really hurts! From an adult point of view it probably doesn’t hurt but think because he’s had blood tests and said they hurt he’s convinced himself this will hurt and worked himself up so much.

So the first and second goes my husband took him and pretty much stood so close to his face that he couldn’t look down at his ankle. Needle was put in an instant and he was instantly fine and playing on his iPad for the next 30mins!!! So if you ever get PTNS I’d recommend someone who doesn’t have a fear of needles taking them, as I believe he probably also picked up on my fear! Take an electronic device, fave sweets and be prepared to bribe as a last resort !!!!

So they’ve said have 12 sessions and even though we’ll be away for one week they will give him treatment twice the next week. Not sure what happens after that, think there’s an option for “top up” treatments We’ve completed the obligatory chart to start off and been told should see a difference around week 6 so fingers crossed!!!!!

Jayjay-1 profile image
Jayjay-1 in reply to fuzzalert

Oh my goodness that sounds like how my son would of reacted - I hate needles so that’s going to be interesting. Luckily my husband is much better than me too. If we do get it we have quite a drive to get to the hospital (3 hours) so thank you so much as this is really useful and interesting to know in advance if we ever get to that stage - still waiting for appointment letter for testing I am trying not to despairat the wait. Wishing you all the best x

Jayjay-1 profile image
Jayjay-1 in reply to fuzzalert

That’s good that your son couldn’t feel the needles - I wondered what sort of needles they used for this. I really hope at 6 weeks you can see a difference - best of luck with the next few weeks x

fuzzalert profile image
fuzzalert in reply to Jayjay-1

So they look like what I imagine acupuncture needles to look like. Ones we took home and got out the packet are actually bendy like cats whiskers and as thin as thread but they’re called “sterile needle electrode” as that needle then gets attached to the little machine whilst they lie there for 30mins. All very chilled out. Think I made the mistake of saying yes to talking about what was going to happen and the nurse showed the needle and that’s when he freaked! Think it’s using the word needle If I could go back I’d ask them to say little scratch!! But onwards and upwards right?!

Jayjay-1 profile image
Jayjay-1 in reply to fuzzalert

Hi - dare I ask how it’s going?? I really hope it’s good news for you all x

fuzzalert profile image
fuzzalert in reply to Jayjay-1

Hey there!

Well I think PTNS is now is week 9 but unfortunately he hasn’t had an appointment this week so they’ll carry it out twice next week and I reckon I’ve noticed a difference his week. It’s like he’s gone back a couple of years! So many instantly urgent accidents where it comes flying out! By week 6 my son said in the way home how he’d got the message to go but said he could hold it, which if you’re a parent on here with a child with overactive bladder that is all you’ve been waiting to hear. So I’m holding out hope that things carry on improving as I’m nervous as to what the next steps are (especially as he’s currently in strong dose of Vesicare)

Have you got your appointment through yet? I really hope so. Just remember to have all of your Qs written down and do not feel foolish for asking any of them!

Jayjay-1 profile image
Jayjay-1 in reply to fuzzalert

We have an appointment in this coming half term for the urodynamic testing - I am praying this doesn’t get cancelled.

Pleased to hear some improvement- wishing you all the best !

fuzzalert profile image
fuzzalert in reply to Jayjay-1

Good luck with the appointment and please keep me posted!

Now there’s talk of possibly using TENS machine as a treatment option but it’s not currently set up at our hospital as a treatment option for kids with OAB but I’m hoping it’s put into place as it’s something that can be done at home

Jayjay-1 profile image
Jayjay-1 in reply to fuzzalert

I bought a tens machine the other day - we used it for a couple of weeks but without proper guidance I wasn’t sure if I was doing it correctly . I am desperate to try anything within reason of course. I am worried that they will find that he just couldn’t be bothered after all this but surely at 11 it can’t be that !!! I do hope they actually find something & can help !!

fuzzalert profile image
fuzzalert in reply to Jayjay-1

Thank you for asking after us! This forum has been really helpful for me, just knowing that we are not the only family going through it!!

Jayjay-1 profile image
Jayjay-1

Hi

Thanks for asking.

I chased it and they are hoping for an appointment in October at the earliest and will confirm the date in September- it feels like forever!!!!! Obviously just keen to get started.

The best of luck with the PTNS next week - I would need some distraction too - I am not good with needles! I am not sure how my son would cope with that but we aren’t anywhere near that stage. I have my fingers, toes and everything else crossed for you. Look forward to hearing and I really really hope this goes well and that this helps. You have done so well to get all this in place.

mummynev profile image
mummynev

Hi Jayjay,

I don't know whether you've had your appointment through for urodynamics yet, if so my reply may be too late.

My son has these tests done in May without anaesthetic, he was 12 at the time and decided that he didn't need a 'run through' of the gas& air and would just "go for it!".

Alder Hey were very good though and we were given the opportunity to chat through the procedure with the therapist who accompanied him during the procedure and also the opportunity to visit beforehand to try the has and air etc.

On the day the urologist and urology nurse were lovely with my son and were as discreet as possible given his age and potential embarrassment. My son was brilliant and coped really well, he said the gas and air was good and the procedure was very manageable with it. I was present with him throughout and they explained what was happening as they went along.

Like another responder has said, it was a huge relief on a way to see that things were being taken seriously and we weren't just imagining things (I know, unlikely after so many years but there are times where you begin to wonder!).

I hope it all goes well for you.

Jayjay-1 profile image
Jayjay-1 in reply to mummynev

Thank you for your reply . No not yet.... we are pencil in for this coming half term. They said they won’t confirm until they have a theatre slot?

Jayjay-1 profile image
Jayjay-1

Well I am completely devastated- our appointments for urodynamic testing has been cancelled and we have been given jan 2019.

I am a year on and not even a inch further forward with it all.

Trying to explain to others that was just for the testing not the actual treatment ... gutted.

fuzzalert profile image
fuzzalert

Just wondered if you got the test/appointment in January?

Jayjay-1 profile image
Jayjay-1 in reply to fuzzalert

Hi ya yes we had the testing done and currently having bio feedback and ptns treatments weekly which is a massive journey each week - almost half way through and no change so far ....

how are things with you ? Have they decided the next step forward ?

fuzzalert profile image
fuzzalert

Got an appointment next month !

I decided to give my son a break from all bladder meds as they weren’t working and to give his body a break and see what happens naturally. That was last autumn and yes his frequency has defo decreased over the years but his urgency is still exactly the same, maybe marginally worse. From the hospitals point of view I’m not sure what’s left for him to try. Im very aware of his anxiety/mental health having lived with since he was little and even though he’s still having accidents we’ve all taken a backseat with it all and that’s eased his worries a little bit. (Im trying to contain mine as he’ll be going on a school residential soon!!!!)

What’s the biofeedback doing ?

Fingers crossed by the end of PTNS you’ll see a difference Keep me posted, if you don’t mind

Jayjay-1 profile image
Jayjay-1 in reply to fuzzalert

The bio feedback is to check the pelvic floor muscles are working- so he has to squeeze & relax while electrodes are stuck in certain places. He plays a game starting at beginners and work up the levels.

Jayjay-1 profile image
Jayjay-1 in reply to fuzzalert

Hi well I too had a break as nothing working and my son is now 13 - we had a paediatric app and offered a micro array gene test. I took the offer as a blood test and waited about six months for the results and put or the blue I get a letter saying he has a rare deleted micro gene - I looked this up and it could be connected due to COVID no follow up as of yet.

MrsSquirrel profile image
MrsSquirrel in reply to fuzzalert

Did you find any progress?

Jayjay-1 profile image
Jayjay-1

Of course keep you posted how we get on !

MrsSquirrel profile image
MrsSquirrel

How was the actual testing? That's our next step at Nottingham (possible OAB, dysfunctional voiding as not emptying too), just awaiting appointment x

Jayjay-1 profile image
Jayjay-1 in reply to MrsSquirrel

The urodynamic testing do you mean ?

Jayjay-1 profile image
Jayjay-1

Well a rather frustrated update - the biofeedback we have had no difference . They scanned him afterwards and the bladder still had fluid so not empty properly.

We have two left of PTNS but no change - I have no idea where or what we do after this.

MrsSquirrel profile image
MrsSquirrel

Yes urodynamic. Our consultant said they prefer to do under gas and air so they can monitor how the child is sensing when bladder feels full etc and is more accurate reflection if they are conscious during rather than out for the count with a general.

That's a bugger about the biofeedback : ( They said to us possibly botox for overactive but they want to try to see root cause. Was it you who I talked to about retained primitive reflexes? I'm guessing no joy with those exercises if so?

Jayjay-1 profile image
Jayjay-1 in reply to MrsSquirrel

My son had a general and had investigation work and tube fitted through his tummy to his bladder ready for testing next day .he then had a series of tests using the tube to fill the bladder etc and then removed and sent home .

While this sounds ok - my son had to have a sedative for the general- the investigation work made his winky a bit sore and he didn’t feel very well after general or the idea of the tube . He struggled with the testing but we got through it - mainly didn’t like the tube and the whole idea of it.

It was after this offered biofeedback and ptns .

MrsSquirrel profile image
MrsSquirrel

What did they conclude from the test?

nice.org.uk/guidance/ipg362...

PTNS results from studies, and options if this does not work. If useful. Not conclusive but the way I read it, it suggests that it may work over longer term (a year) with some top ups after initial 12 weeks. xxx God, if we go down that route its a 4 hour round trip to Notts every week for 3 months....that's gonna be fun.

Did they offer TENS at any point?

Jayjay-1 profile image
Jayjay-1 in reply to MrsSquirrel

No not offered tens

Jayjay-1 profile image
Jayjay-1 in reply to MrsSquirrel

It was a 8 hour round trip for us for 3 months

Jayjay-1 profile image
Jayjay-1 in reply to MrsSquirrel

I bought a tens machine off the internet I try it at home

Jayjay-1 profile image
Jayjay-1

It was a 8 hour round trip for us !! Cornwall to Bristol every week for 3 months ...

MrsSquirrel profile image
MrsSquirrel

Crikey - 8 hours, that is harsh.

MrsSquirrel profile image
MrsSquirrel

Cornwall is a land unto itself! Bristol though, that is a looong hike.

Jayjay-1 profile image
Jayjay-1 in reply to MrsSquirrel

Yeah incredible nothing available closer isn’t it! Still I would go to Scotland and back if I thought it would help lol

MrsSquirrel profile image
MrsSquirrel

Any progress?

MrsSquirrel profile image
MrsSquirrel

Update for us - tried urodynamics test - not classic OAB so no to Botox route. Tried Mirabegron (not liscened for kids so GP and us kept careful watch on things like BP and heart rate). GP took him off it as he was getting headaches. Waiting for TENs machine trial at Notts. Hopefully we can then have a machine at home? This is what consultant suggested. Oh we also tried bio feedback but he has dyspraxia so couldnt sit still or isolate his pelvic floor in order to activate the game. We tried for around 40 mins but no joy. Back on 10mg solifenicin but still 18 wees and accidents a day - slightly less urgency maybe and bit better on volumes - up from 50 to 60 to the heady heights of 80 to 90. Got a referral back to continence nurse team for pad assessment and they are sending us some trial things - night pads and pants with washable pad inside. We will see! Having some accidents/wet beds at night even though in pullups.

Jayjay-1 profile image
Jayjay-1

Update - tried urodynamics - offered biofeedback and ptns- no improvement. Tried solifencin but taken off as made him feel very ill. Consultant told maybe Botox but that was the only option left or self catheterisation.

Meanwhile my son has dyspraxia and low muscle tone and a paediatric doctor ( this app took a fight to get a review of his situation) and she suggested he could have a micro array genetic test - it takes 4/6 months to come back and only just got results. To my utter shock he has a rare chromosome micro deletion and although each person with this the outcome is different bladder and bowel issues (dyslexia , dyspraxia, low tone etc etc ) was prevalent among those with this deletion. Some said it just went some said it was lifelong - I haven’t met with the genetic consultants yet because of COVID - I am not sure how I feel about it all but it’s been a long bloody road !!! X

MrsSquirrel profile image
MrsSquirrel

Hello Jayjay - gosh that sounds like our son. He has dyspraxia and dyslexia. We asked the consultant and he said there was no proven link with bladder problems. We are due to pick up a TENS machine from hospital once we have had both jabs. Otherwise no progress at all. I think it's worth us talking to paediatrician about genetic testing. Did you have to battle them to get it (expensive for NHS to do?) Thanks.

Jayjay-1 profile image
Jayjay-1 in reply to MrsSquirrel

I definitely think the genetic testing is a good idea - it’s just a blood test just takes ages to get results and if I am honest I didn’t really have to fight for that as I thought that it wouldn’t be relevant in our situation- no idea why I convinced myself of that. So it was actually really easy for us luckily to get the micro array test done- it was basically done to rule that factor out so I really was surprised when something came back. I thinks it good just to like us be able to be certain what you are dealing with . Hope that helps xx

MrsSquirrel profile image
MrsSquirrel

Thanks for the reply. Did diagnosis give any indication for treatment?

Jayjay-1 profile image
Jayjay-1 in reply to MrsSquirrel

If only !!! It gave a possible cause but that’s it and very little info or support etc - but found other people with similar issues etc with the same genetic problem so some solace in that I suppose … I just keep on and on until I get there. You would think that it would open doors etc and help - not in our case ..

MrsSquirrel profile image
MrsSquirrel

Hmm. Just wondering whether to pursue this route with paediatrician when we see her again. She's not very pro active, feel like its me that does the running to try to find out things. The wheels of the NHS roll slowly! Wondering whether to save up for a private appt?

Jayjay-1 profile image
Jayjay-1 in reply to MrsSquirrel

You could even ask the GP to do a referral for the test ? We had a different paediatric doctor and it was her being proactive that we ended up getting it done - she just wanted to see the full picture incase there was something else that might be causing a problem- shame we didn’t see her again. She convinced me that it would be just good to rule anything else in/out etc and just to do the simple blood test blah blah .

MrsSquirrel profile image
MrsSquirrel

Thanks. I think I will mention it next time we see GP/Peadiatrician.