omarito
02-22-2009, 09:13 AM
Hi Everyone, i missss uuuuuuuuuuu alllllllllllllllllllllllllll, i miss writing my feelings, sharing it with everyone in this forum, coz i felt here almost everyone is trying to help in this unknown disease,
I have walked a far long distance since the last time i wrote to u, i came here to Egypt to visit my parents, i only enjoyed 1 month of stability since i came here, I Thank God for everything and since last October i am in a very big issue, one day i had complete retention and severe pain, after a long story of tests , urodynamics, and other painful procedures, i was diagnosed with severe PFD, with the ic, my doctor explained to me why i had recurrent stones the past years, he told me that my bladder nearly doesn't work( that appeared in the urodynamics), that's why i was voiding nearly by straining leaving a big residual returning to the kidney, causing pain, stones and other problems, however, i ended on CIC ( self intermittent catheterization), some days i can't urinate weven 1 drop, however there were a lot of opinions for me to relief the pain
2 doctors suggested augmentation which was totally refused by other doctors, i njected Botox twice once 100cc to the external sphincter, when it failed i injected 300cc in the bladder to relief the pain, nothing worked.
i went to test the neuromodulation on both sides, it was a torture and big failure for me, now i am on CIC and 20mg morphine(nalufine injection) daily,
i stopped the Elmiron, Ditropan and other anticholenrgics, i am moving back to the states in 2weeks, i am in Hackensack, NewJersy, I am worried about getting my catheters, will my doctor approve the narcotics or i have to go to pain management center or they r going to subject me to more painful tests,
i need to hear from you, sorry for writing such a long thread.
I have walked a far long distance since the last time i wrote to u, i came here to Egypt to visit my parents, i only enjoyed 1 month of stability since i came here, I Thank God for everything and since last October i am in a very big issue, one day i had complete retention and severe pain, after a long story of tests , urodynamics, and other painful procedures, i was diagnosed with severe PFD, with the ic, my doctor explained to me why i had recurrent stones the past years, he told me that my bladder nearly doesn't work( that appeared in the urodynamics), that's why i was voiding nearly by straining leaving a big residual returning to the kidney, causing pain, stones and other problems, however, i ended on CIC ( self intermittent catheterization), some days i can't urinate weven 1 drop, however there were a lot of opinions for me to relief the pain
2 doctors suggested augmentation which was totally refused by other doctors, i njected Botox twice once 100cc to the external sphincter, when it failed i injected 300cc in the bladder to relief the pain, nothing worked.
i went to test the neuromodulation on both sides, it was a torture and big failure for me, now i am on CIC and 20mg morphine(nalufine injection) daily,
i stopped the Elmiron, Ditropan and other anticholenrgics, i am moving back to the states in 2weeks, i am in Hackensack, NewJersy, I am worried about getting my catheters, will my doctor approve the narcotics or i have to go to pain management center or they r going to subject me to more painful tests,
i need to hear from you, sorry for writing such a long thread.