What advice have you received from your doctors?

[johnstone]

Chris,

It appears the only way you many know for sure what the cause is will be to have some tests done. I would recommend you start off with a EMG nerve study. This will tell you if the cause is related to one, or more of the nerves in your spine.

Keep us posted.

[chrisS]

I took your advise and just did some research on Cauda Equina. Found a good site at http://www.caudaequina.org. Your right, the L5 is part of the cauda Equina bundle(L4 TO S4) which gives rise to the sciatic nerve.

Looks like I have one of the possible causes "Stretching: e.g. by spondylolisthesis (slippage of one vertebra on another), and some of the consequences which include Incontinence, Impotence, Sciatica (affecting only my right leg so it's asymetric, back pain.

Another interesting thing I found is they say:
"An overactive bladder muscle(detrusor) may cause high bladder pressures and a reflux of urine up towards the kidneys, so regular checks may be needed to exclude any kidney damage." Now, my hemituria is microscopic (not Gross which means visible to the eye), and this type of Hematuria originates higher up in the urinary system, meaning the Kidneys, unlike Gross Hemituria which originates lower down (the bladder area). So Cauda Equina could be a possible cause of my hematuria as well. So, lot's more research to do here. Thanks for the tip.

[johnstone]

There are several possibilities of what could be causing the issues your having. Some of these issues maybe related, and some may not. It took the doc's a LONG TIME to finally conclude I had Cauda Equina Sydrome (SEC). One of the doc's I had kept dancing around it without saying for sure. I guess if it walks like a duck, sounds like a duck, and looks like a duck, it might be something else, so the doc's want to be really certain before that say for sure someone has CES. There is one thing I can tell you for certain....it can be very painful. I take 3 different kinds of nerve meds to help control the nerves.

The only way your going to know what is causing all your issues is to have some tests done and even then.......the doc's may not say for certain you have CES. The EMG will probably be one of the first test because this test will provided a LOT info regarding any nerve issues you might have in your legs and spine. Talk to your doc about it.

John

[fred1959]

Gimwet, I realize I'm responding to a two-year-old post, but I'm new here. You mentioned the "fill your bladder" test. That sounds like the Urodynamics thing I'm scheduled for next month. Would you mind telling me a bit about it?

I drip and dribble all day and night, and my urologist doesn't know why. I'd love to hear about your experience.

[wheels5894]

This might help, Fred http://www.netdoctor.co.uk/womenshealth/sui/urodynamics_005142.htm

[Gimwet]

Hi Fred1959---

Just spotted your post. I was, in fact, referring to the Urodynamics testing, which I had some time ago.

A very small catheter is placed into the bladder, and sensors are placed around the pelvic area to sense muscle contraction/movement/spasm as the bladder is filled. If I remember correctly, a small sort of "pod" sensor was also inserted in the rectum (very small, not painful). As the controlled filling of the bladder takes place, all is monitored; amount prior to voiding, muscle movement, sudden-ness of voiding....you name it. This was the test where my Urologist exclaimed "Your bladder is weird!", due to the inconsistency during the test of the spontaneous voiding.

If you are really modest, this test could be uncomfortable from that point of view, but overall it's not physically demanding. Just follow the instructions the doctor gives, and hopefully you will get some information you don't already have, leading to more treatment options.

Good luck!

[CharlieP]

I kid you not this is what my urologist said to me at my last visit.

"this is the way your body is now, accept it and deal with it"

!!!?

[adhb]

I kid you not this is what my urologist said to me at my last visit.

"this is the way your body is now, accept it and deal with it"

!!!?

If your condition is a chronic one, "accept it and deal with it" is excellent advice. You need to manage your incontinence and get on with living your life.

[CharlieP]

I agree and believe me I have, but I guess you had to be there really, it was more the way he said it rather than what he said...

Yes my condition is 99% certain for the rest of my life, I have nerve damage due to an accident with my spine in the military.

[K.T.]

At my last urologist visit, I was told the only other thing that they could do to help me live a better quality of life was a surgery where they would remove my bladder and use part of my bowel to create a small holding area and it would be made to drain out of my belly into a bag. This is similar to a colostomy. He feels that my quality of life would be better because I could just drain the bag and not wear diapers. But he said do to some other medical problems I have with my abdomen he won’t do anything because my recover would take too long and I would be in so much pain that it’s not worth it. This is when I told him that I am not letting the diapers stop me from living and working. I just have to make sure I use/wear good quality diapers.

I can honestly say that this doctor has been the best I have ever worked with and he is understanding and is there for me if I need anything else.
His office is even trying to work with me to convince my insurance that the diapers are a medical necessity. Doing this to fight the insurance for diaper coverage.