Urologist for Mitrofanoff Procedure in Jacksonville, FL

[Stephaboo]

Hello Everyone,

My name is Stephanie and I'm new to your site. I am a C3 - C7 quadriplegic since 1986 when I contracted Transverse Myelitis. I live near Jacksonville and am trying to find an urologist who has experience with SCI and has done the Mitrofanoff procedure. I've had an indwelling cathetar for 18 years and in the last two have had chronic & severe infections (proteus mirabillus, e coli, enterococcus) and am looking into urinary alternatives that will help me prevent future ones. I've not had great experiences with urologists of this area and am hoping someone here can lead to me a caring and understanding one.

Thank you very much.

Stephanie

[SCI-Nurse]

It is probable that with such a long term use of an indwelling catheter that you would need both an augmentation (a big surgery) and a Mitrofanoff. What is your actual hand function (you can't be C3-7....it doesn't work that way)?

I would suggest calling your closest SCI Center (Miami, Jackson Memorial? The VA SCI Center in Miami or Tampa?) and see if they could refer you to a urologist. For this surgery, you can also call around to pediatric urologists (check with a large children's hospital for names) as they will usually be most experienced in this procedure.

(KLD)

[Stephaboo]

Thanks for the advice. I am a C3, 4, 5, 6, 7 at least that's what the doctors said! http://sci.rutgers.edu/forum/images/smilies/smile.gif I was feeling lazy and typed C3 - 7 meaning C3 thru 7, sorry for the confusion. Question: Why would I also need the augmentation as well?

Stephanie

[Stephaboo]

Oops, forgot to answer your other question. I have no hand function just slight non-functional movement of my left arm even less in my right and can wiggle my toes I'm just an odd duck.

Stephanie

[november]

Originally posted by Stephaboo:

Thanks for the advice. I am a C3, 4, 5, 6, 7 at least that's what the doctors said! http://sci.rutgers.edu/forum/images/smilies/smile.gif I was feeling lazy and typed C3 - 7 meaning C3 thru 7, sorry for the confusion. Question: Why would I also need the augmentation as well?

StephanieAfter so many years using an indwelling catheter your bladder has probably shrunk considerably and won't be able to hold very much. You would be having to cath ALL the time. I've known others that have had indwellings for as short as 5 years that resulted in a bladder the size of a walnut. http://sci.rutgers.edu/forum/images/smilies/frown.gif

Oh with no hand function you would need to have someone with you a lot of the time to cath if you had the mitro. Just something to think about.

Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash

[SCI-Nurse]

Just to clarify...where is the last location where your sensation is normal? What muscles do you have? Again, you can't have a C3-7 injury. The injury is named after the lowest level (on each side of the body) that has normal sensation and a muscle strength of 3 or better. You can be C3/4 or C4/5 or C5/6, but not C3-7.

With no arm muscles (wrist extension, biceps) it would not be possible for your to manage the Mitrofanoff by yourself. Do you have someone with you 24/7 who would be doing your caths?

(KLD)