Dad\'s Continual Burning Issues

hmmmmmmmmm......tis a mystery. D-Mannose is a naturally occuring sugar and is actually found in cranberries. I guess it wouldn't hurt but not sure it will solve the problem
tinyurl.com/29uotyn
By the way...have his B12 checked as low levels of that vitamin can also make him disoriented and dizzy and with the neobladder he can't metabolize it because they've cut away that part of the intestine that metabolizes it. He would need shots. Make them humor you and do the test. At his age he would be low on it anyway.
Now to the Urethra......have they scoped that and sure that the cancer has not recurred there? Has he had a traumatic catherization?
Florida a tough place to find a great uro...Soloway in Miami the best if you can get him to go there?
pat

Hi Pat! It's been a long time since I get a chance to get back on here to post and research. My dad's condition has not improved and he is at his wit's end. His psychological condition is worsening by the day/minute because there has been no prognosis and resolution to his continual problems. We had to stop the Neurontin because it was causing him to be disoriented and his mental sharpness was going down fast. We went for a 2nd opinion to another RC/Neo Specialist and his opinion was that he should seek a Pain Management solution. My dad refused that option as he did not wish to be loaded up with shots/medicine for pain without finding the problem. Since this time he has been in the hospital 2x with bacteria (e-coli and others) and gotten IV. The cycle is that he begins with a mild uncomfort inside the urethral tube then it gradually begins to flare with burning and becomes intensely elevated. He takes Tylenol w/codeine and tries to manage the pain. This cycle is continous. In the mean time he gets the urine tested regularly for infections.....some times there is bacteria and others there is no bacteria. The occult blood is always present.

The latest update is that next week we are going to try the Pain Management solution and see what that does. I have heard they do an MRI of the spine/nerves and check for trigger points that could also be causing the burning. I don't know what else to do. We are DESPERATE for help and have landed dead-ends everywhere we turn.

His Neobladder is working fine....a sonogram revealed that it does empty properly. He doesn't have any issues with having to cath...although he does irrigate every noe and then in case the mucous is getting traped and causing the burning.

Do you know of anyone that I could reach out to for some assistance on this matter? Is my dad the only person that is experiencing this problem?

Also, what do you know about taking D-Mannose for the infections? Can he take that with his neobladder?

Sorry for the rambling.......I had a lot to catch up on with you or anyone out there that can help my father.

Thank you so much!

Jackie

Pat...I questioned the doc about this and he felt that since they cannot find anything else (no bacteria, no viral, no bad scans, etc) he thought "perhaps" it was nerve related and in this case a possible "neuroma" formed. It is a process of elimination with a dart shot in the dark! This is the 2nd time he takes that med and up to now....he is feeling good. No burning, no urges (tenesmus...this is the latin word for what he calls "pujo" in spanish). We are watching for side effects but my mom says he is calm, and not showing any other effects. So far.....so good! Halleluyah! I'll keep you posted. As we learn more...you learn more and are able to help others. This is how it works. Did Warren ever answer you?? I would really like to find someone out there with the same issues. That would be very helpful. Let me know.

Jackie...interesting as neurontin is an anti-seizure medication but is also used to treat nerve pain from herpes and shingles. I guess it was worth a try huh? I wonder how he came up with that? There are some warnings on it so keep an eye on him........
www.drugs.com/neurontin.html
Pat

Hi Pat! Yes, thank you for the good information on the other site. I figured I needed to get on all the sites available for help. I look forward to hearing from Warren. I found out today that the proper terminology for the sensation he has pretty much all the time is called "tenesmus" (Latin), which intensifies and then he gets that strong burning. However, I will say that since his last hospital visit last week he has been pretty good. No blood in urine and no burning. He is now taking Neurontin. Any experience with this?

Hi Jackie...glad you came over to this site. I know i gave you referrals in the Florida area which i hope you follow up on but also perhaps here in the forum you will get some replys from others who have gone through this. My first thought was urethral stricture but he also has blood in his urine. Hopefully Warren will step in and see something he recognises.
Pat