Dad\'s Continual Burning Issues

Take a look at this paper on Dysuria...click all the headings for each page..it sure looks like the symptoms doesn't it. I'm still wondering if there wasn't a traumatic cath that happened which they would never admit.
www.emedicinehealth.com/dysuria/article_em.htm
As for the B12...glad he's getting it caught up but he should have maintenance shots every month. I know i have to have them and i'm a long way from his age. You just can't metabolize it anymore after cystectomy.
Pat

Hi Pat,

No, he never had chemo or radiation before or after surgery, the doc said it was not needed.

He does get B12 injections. He just finished up this week on his last batch....I believe it was weekly for 1 month or 2 months (can't remember).

Yes, the Cleveland Hospital was in Florida and other than that Uro.......the place is fantastic. I kinda wish I would not have gone to that doctor but he was the one with the neo specialty so we thought he was the better choice. Perhaps he is great at that but has terrible bedside manners and doesn't seem to really CARE too much about his patient's pain.

I'll keep you posted on the reply from Dr. Schoenberg. Thanks again for the info!

it kind of seems like he's actually getting repeated urinary tract infections as he seems to respond to the antibiotics..now to find the right one and to keep him on it for some period of time. You said he had chemo prior to the surgery? That further compromises the immune system.
www.ehow.com/about_5549669_infection-after-bladder-removal.html
I hope Dr. Schoenberg can refer you. I just realized you went to the Fla branch of Cleveland Clinic not the one in Cleveland.
Maybe an infectious disease specialist could help?
But do get the Bl2 tested...anyone can do that one. Its just a draw of blood and takes about 2 days to get results.
Pat

Pat,

I didn't want to say this but...the 2nd Uro at Cleveland Clinic (Dr. Muruve from Canada) saw him about 3 times and looked at his previous charts, CT Scans, test, etc and suggested that he irrigates 1-2x per week to see if the mucous buildup was causing a nerve to trigger the pain. That didn't do a thing. He had a bad flare of the burning which he could not tolerate at home with anything so I took him to the ER of Cleveland. They called Dr. Muruve from the ER and his response was "there is nothing we can do for him....send him home and have him make an appointment to see me at my office as outpatient". The ER physician confided in me and said, "he's a great doctor but has no compassion....I would not take my dad to him". My dad was admitted by the ER physician due to his severe burning and was treated with IVs for 3 days. Dr. Muruve did not even bother to stop by and see him nor call to find out his condition! Needless to say.......HE WILL NEVER SEE MY DAD AGAIN IF HE IS THE LAST URO ON EARTH! I was so crushed by his attitude and uncaring ways......very, very sad to see this.

He has had tests but they are always urine tests or CT or sonogram. What is a gram stain? I recently asked for a FISH test but since he is on antibiotic right now (Cipro) they suggested to wait until he finishes that to have it done. What tests do you suggest/recommend? I will speak to his primary.

I will certainly try to e-mail Dr. Schoenberg. Thank you so much for the information. I will keep you posted on any response I receive.

Thanks Pat.......for your help.

Jackie

The #2 Urological Hospital in the country brushed him off? Huh? They've NEVER seen that or could refer him to someone on staff that had? Wow........changing my mind about Cleveland.
He has had tests right to identify the culprit right..gram stains, etc?
I'm wondering if you emailed Dr. Schoenberg at Hopkins if he might refer you or offer a second opinion on this. Geez its worth a try. One of his best guys at complications just went to Jewish Hospital Long Island Dr. Chan
www.northshorelij.com/NSLIJ/David+Chan,+MD+New+Vice+Chairman+of+Urology
Dr. Schoenberg
urology.jhu.edu/markschoenberg/index.php

I'd sure write him..wouldn't hurt. He's very compassionate and helpful.
pat

Yes...this is a complex case because the Uro that did the surgery has not had 1 case like my dad's. The 2nd Uro at Cleveland Clinic Hospital also said he has no patients with his symptoms and the 3rd Uro that is currently seeing him does not do Neobladders. He tried antibiotic injections for 5 days which did help him for about 2 weeks but then we were back to square 1.

The last scope was in Nov 09 when they biopsied some tissue in the urethra and all checked out. The 2nd doctor did not want to scope him since it had not been 1 year....he said it was not good to keep going in. ????

I want to see Soloway but my dad is frustrated and said he has been seen by 3 Uro's in 1 year that have come up with nothing and meanwhile he has to continue to endure this quality of life......which he does not wish to continue. He is very, very, very depressed.

NO traumatic catherization.....he doesn't cath to drain the bladder....he only irrigates/flushes every now and then when he sees the mucous buildup.

I really need help.........where do I turn?? There must be something wrong that is causing the burning.