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Re: Neurogenic Bladder Questions

Posted By CCF Neuro MD msf on November 11, 1998 at 13:06:03:

In Reply to: Neurogenic Bladder Questions posted by Diane on November 10, 1998 at 22:48:16:

Hi...You've given me great answers and suggestions on this forum before, so I'm hoping you can help me again.
I've been at the Mayo Clinic in Scottsdale for the past 8 days, and go back in a few days to finish my tests, and get reports from my doctors.
I wont bore you with all the details, but I'm being tested for MS and other neurological problems because of my neurogenic bladder, and a few other symptoms.  My Urologist has done all the tests like Urodynamics study, cystoscopy, etc. and said that so far I show that I have a completely non-functioning bladder/bladder muscle doesnt want to contract at all. I asked him what caused this and he is sure that it is neurologically based, and is leaving that diagnosis to the Neurologists.
I have only had this problem for about 4-5 months, and quickly went from self-cath 3 x's a day to currently about 8 times per day.  I dont have any sensation of having a full bladder now until Im retaining about 1100-1400 cc's.  Even at this point, Im usually unable to void on my own.  I give it about 10 minutes, and then use the cath to avoid further frustration.  I know I should be talking to my docs at Mayo about my questions, but was told I'd have to wait until the end.  I'm worried about a few things though, and hope you can help in the mean time.  Neuro and Urologist both said that 50% of patients with my symptoms go home without a Neurological diagnosis.  Said many of them come back at a later date with more/more severe symptoms and then are able to get diagnosed.  Whether I have MS or anything else that is diagnosed, I'm wondering what my future holds as far as my bladder is concerned. I'm a 32 yr old white female and except for the past 6 months have been quite healthy.My questions are:
1.  Since it has rapidly worsened, will it come to a point where I will stop self-cathing and have to have a permanent cath? is there any other treatment or surgery or anything that can repair my bladder?
2.  Do you see non-functioning bladders such as mine regualarly, and if so, what is the general outcome?  Ex. MS or something else, or do most people not get a neurological diagnosis?
3.  My  doctor told me at the end of my cystoscopy that my bladder looks fine but my kidneys are dialated, most likely because Im still not emptying bladder.  What exactly does this mean, and is this serious to have kidneys dialted?  One reason I'm asking is that I have terrible abdominal and back pain and wonder if this is the cause.
Thanks alot for your help, I really appreciate all you do.

Dear Diane,
Thank you for using the Forum again.
If the muscle which allows your bladder to empty itself (the detrusor) is already non-functioning, then your bladder function can't get worse. This doesn't mean that you will have to use a permanent catheter. In fact, we try to avoid the use of permanent catheters, because they increase the risk of urinary infections. It is better to continue intermittent self-catheterization if you can perform it without difficulty and if it is efficient. There are surgical procedures available, but they are usually performed later, or if a serious problem occurs, and none of them really restores the contractions of the bladder.
I would say that a majority of people with neurogenic bladder eventually get a diagnosis, but it can take time. If nothing definite shows up on the tests, we re-examine the patient at regular intervals, sometimes repeat tests, and of course we treat their symptoms.
You already know that it is very important to empty your bladder correctly. If a significant volume of urine stays in the bladder, you can develop infections, and the urine can reflux in the tubes which connect your bladder to your kidneys (the ureters). In the short term, this leads to a dilation of these tubes. In the long term this can produce infections in your kidneys, and eventually cause damage to your kidneys. If your kidneys are dilated, you have to find a way to empty your bladder optimally. This may require that you increase the frequency of catheterizations, although 8 catheterizations per day are usually enough. You could monitor your daily intake of fluids; it is necessary to drink a fair amount of fluids (usually 2 quarts per day) in order to prevent infections, but if you drink too much, then too much urine accumulates in your bladder between 2 catheterizations. You probably already monitor the amount of urine that you get with each catheterization. It is sometimes difficult to understand what can be wrong, so I suggest that bring to your doctor a diary of your fluid intake and volume of urines; with this information, he should be able to tell you if you have to change anything in your current bladder management. Do not try to push to empty your bladder before you catheterize, this can only make the reflux worse. If the reflux persists even with adequate emptying of the bladder, a surgical procedure is sometimes required to prevent damage to the kidneys.
I hope my questions helped. The management of "neurogenic bladders" can be difficult. If you continue to experience problems, it is better to get the opinion of a urologist specialized in this area.

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