Hi Mike!
Thank you for responding. My dad had his RC in Aug 2007...just made 3 years. The burning started a little over 1 year ago. He has been on and off antibiotics for about 2 years for one reason or another. It seems as though the doctors are quick to prescribe those antibiotics when the colonization reaches over 100,000. We have been to the ER 3 times this year with severe burning that he has not been able to manage. The rest of the time he has mild burning which he handles with Tylenol Codeine (which I wish he didn't have to take so often!). After we went for a 3rd opinion in July he had the antibiotic shots and he got much better for about 2 weeks. He was well enough to go to a beach vacation and went swimming in the ocean and had a great time. Right after that...the burning started again and has been back with a vengeance since. Could the salt water have aggravated things?? I wonder....
The original surgeon did think that it was some type of nerve damage but that is not confirmed with any test so he prescribed Neurontin..that was back in January. He got better from the burning but his mind started to deteriorate so we stopped it........a major side effect from that drug.
He is going to see a Pain Management team on Tuesday to check on the nerves from the spine that may be triggering this burning. We don't know what else to do.......we are overwhelmed by all this and have run into so many walls. It's so hard to keep him positive and motivated to keep searching for a solution.
Do you think I should seek a infectious disease doctor? What is nerve specialist doctor? Is that the same as the Pain Management group?
Thank you for your feedback....I appreciate anything you can offer that might help. My dad is 78 and other than this issue has no other major medical condition. I feel terrible that my dad is having to live like this and is so depressed about it. He is running out of steam.