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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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