ERIC
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Urology dynamic tests

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

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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?

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

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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 😉

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

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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?!

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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!!

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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!!!

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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!!)

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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!!!!!

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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!

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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.

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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!

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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!

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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!!

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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

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Hi

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

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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!!!!!

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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

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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

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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?!

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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!!

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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.

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