[crazy8]

I am totally distraught after seeing my urologist. I have had an indwelling catheter for 22 years, but now I am having problems with the catheter coming out. I think it is from UTI's. My former urologist retired so I went to a new urologist. He told me that I am too complex of a case for him. He said I should get a bladder augmentation, but that it is not a common procedure and quite dangerous. My general DR said I am not healthy enough to undergo such a big surgery. Here is my main problem. This urologist said that he does not know of any DR's that routinely do these type of procedures.

I was hoping that I could try a Super Pubic Catheter to see if that would help my situation. Does anyone know of any urologists that are experienced with SCI patients with bladder complications? I am located in NY, but I am willing to travel to find someone that deals with bladder issues and Spinal Cord Injuries. Does anyone have a great urologist or know of any?

I thought that trying a SPC would be an option rather than going straight to the "big" procedure, but this DR shot me down. I am seeing another urologist on Tues., but the DR. I just saw told me the DR I am seeing on Tues. had no experience with these types of cases.

I feel totally hopeless after seeing this urologist, and I don't know where to turn next. If anyone has any advice it would be greatly appreciated.

[ruth]

I'm really sorry you are going through this, it sounds like hell.

If they are planning on bladder reconstruction anyway, would there be any harm trying a spc first? If it doesnt help, you've not really lost anything. I'm not a medical expert or anything, but it might be an argument to put to the urologist on Tuesday.

Another option might be pads and no catheter? Thats what I did (and still do, only use small pads now) but I only had an indwelling for a couple of months. Again if it doesnt work, you;ve not really lost anything... the major surgery will still the there waiting for you...

Are you really that complicated a case? Sounds pretty normal to me to be honest (I'm guessing you're female?). I remember when I was in rehab that the nurses said it was harder for women to manage bladder if you leak a lot - I did when first had the idc removed - as the men can stick a condom on, but we are missing the vital piece of anatomy!)

Eventually the bladder got a bit better, as I couldnt use the drugs about - the dry mouth made me feel sick. Now I just have to watch what I drink and manage as best I can (no coffee unless there is a toilet very close at hand, have a spare change of clothes in my handbag etc).

[Avocado Baby]

I'm really sorry I don't know much about this subject. Just wanted to say I'm sorry you're going through such a tough time!

[crash]

Since you're in the states I know that two of the top hospitals for sci's are Craig in colorado, and Rancho Los Amigos in California. You might look into them.

[crazy8]

Dear Ruth, Pink Ali, and Crash, (and also the nice person who sent me the PM)

First let me thank you all for your kind responses. It really means so much to hear from people who actually understand what you are going through. I so appreciate you taking the time to respond to my post. I have had my SCI since 1984, and this was probably the first time I felt completely overwhelmed, scared and hopeless. I am truly an optimist in life, but this DR just caught me so off guard and it was not at all what I expected since he had taken over the practice of my DR that retired.

Anyway, now that I have had a day or two to digest everything I am in a much better frame of mind. I realize that the DR was just a jerk and I need to ignore him and keep on researching until I find the right DR for my situation. I agree that I really have nothing to lose by having the Super Pubic procedure done first and see how that works out. Ruth I had the same problem as you with the medication making my mouth so dry I could not tolerate it.

I went to Craig Rehab in 1984, but when I got there they told me they had a "sister" rehab center in Atlanta, GA, where I had family living at the time so I transferred to Shepard. I am thinking that either Craig or Shepard would be a good place for me to see another urologist, as they are experienced with SCI.

Thank you all again for making me feel much better about my situation. You are right Ruth, I am female and I really don't think that I am such a complex case either. I will just look at this as a learning experience and not return to that DR. After a good night's sleep I am back to normal and ready to conquer the world again. Thanks for listening. Respectfully, Crazy8 (Sheri)

[babs]

Hi, Crazy8

I am 8yrs post injury; complete C5/6....while in rehab hospital, I requested & recieved suprapubic catheter...have had since january 1999. I don't recall the urologists name, but he is associated with Edwards Hosp. in Naperville, IL. I have had very few UTIs thru the yrs...I have been very lucky in that I have never actually been back to urologist since 2mos after surgery, my husband[caregiver] changes the hose at home once a month & I have a family doctor with whom I do regular check-ups.

I hope some of this helps