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Date of last update: 8/13/2017.

Forum Name: Urology Topics

Question: Neurogenic Bladder Treatments

 melliann - Wed Aug 04, 2010 9:08 pm

My son is 11, has an underdeveloped brain stem a smaller than normal brain and a lipoma along L3-L7. A year ago he had no bladder infections at all, went in to the urologist at first to figure out just why I couldn't potty train him, the NP ran some tests didn't tell me what the results were and told me I had to see a urologist. I saw the pediatric urologist and he suggested to do the Mitrofanoff, he said that we need to empty his bladder on a regular basis (at this point I knew that his bladder was stretched up to his belly button so I already knew there was some kind of problem) anyways we did the surgery last July, went smooth, in the hospital for a few days got the catheters taken out 3 weeks later and was taught how to do the cathing. Come October I notice a slight problem, all of his shirts are wet in the front, so when I see that they are wet I go and do a cath on him and nothing in there call the urology office and tell them whats going on, the doctor wants to do a revision something must not be connected correctly (the first time it was done robotically), procedure took a little longer than the urologist planned. Started having problems again in March with it closing up on me at the skin level, went into the urologists office and they tried to open it up and they were unable to so procedure number 3 was scheduled. Just 4 weeks ago we went in because I was unable to get it open, at first the nurse couldn't do it so she put on some kind of cream for 20 minutes and let the urologist on call try to open it up, they were able to get a size 10 foley in. Woo hoo!! That was on a Monday, that Friday night somehow the balloon deflated or my son pulled it out (he has very complex special needs). Called up the urology nurses and told them what happened and that I couldn't get it in at all so they told me to come in and the original surgeon was in clinic that day. He took one look at it and said we need to do another revision, I was like are you kidding me? He said that the scar tissue around it just closed it up. So he told me we could either completely redo it or do a special kind of suprapubic catheter (all I remember is that it has like a little hatch on it that you open up and stick in a special kind of catheter in there to drain him) downfall to it is it needs to be replaced every 3 months and with the design of the suprapubic and with how much I know my son that would mean he would need to be put under every 3 months. Oh and in the past year Ryan has been on so many different medications for UTI's he never had them before the surgery and when we would get off of one we would have to go on another. I'm going down to the University of Minnesota Amplatz Children's clinic tomorrow for a 2nd opinion, and possibly down to the Mayo for a 3rd. I just want to know what kind of options that I have to treat this. I know something needs to be done soon because it is effecting his energy levels, he doesn't want to eat all that much. He already had kidney damage to the left kidney from the fluid built up (that was the test result they didn't tell me until after the surgery). I just need to know what kind of options there are out there?
 Dr.M.Aroon kamath - Wed Aug 11, 2010 5:02 am

User avatar Hi,
Thank you for your detailed post and i empathize with you and certainly understand your predicament.I wish you had given a bit more detail about the nature of the previous surgeries and the results of the current urodynamic studies.

As you must be aware, the further decisions regarding the type of management will largely depend upon,
- the status of the bladder neck,
- the present anatomic status of the urinary bladder(original or augmented),
- present functional status of the reservoir(urodynamic findings),
- status of the pelvic floor,
- status of the external anal sphincter,
- associated fecal incontinence(yes/no) and
- the options that have been exhausted already.

The central objective in all these treatments is to prevent build up of high pressures within the urinary bladder.Apart from that, the other goals are,
- to ensure an adequate reservoir capacity,
- to ensure some form of convenient intermittent emptying, and
- preventing incontinence of urine.

In patients who have undergone multiple failed procedures, the available surgical options may get exhausted and other types of management may need to be considered.

Recent innovations in this direction include
- Neuromodulation (“conditional modulation”) technique. Based on electrical stimulation of the sacral or peripheral nerve afferents. A good option for those with an overactive bladder (detrusor hyperreflexia). This has not yet been widely adopted clinically due to lack of a practical trigger signal.
- intraurethral inserts, such as the "In-Flow system". In-Flow insert is suitable for women with areflexic bladders. Good dexterity, and ability to sit on a toilet are prerequisites. Complications include local discomfort and migration of the device into the bladder.
- Button cystostomy: affords safe and effective bladder drainage and gives children a less restricted quality of life.This may be inserted by 'open' surgery or by a laparoscopic technique.

I hope that for your child, the surgeons are able to come up with the most suitable, individualized option soon.
Best wishes!

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