what to expect?

[cbsummer]

As I go down the road of finding some releive I am running out of option. My uro suggested BCG which I have an appointment for on the 6th what should i expect some how I feel the uro down played everything. thanks for any input

[ICNAsstMgrDiane]

I wish I could re-type my reply to the posting under BCG, Topic: Tb test for BCG study. You can read my story there along with other information that may be helpful to you,

Diane

[lm2]

This is the only thing I haven't tried, but I'm afraid. They're doing other studies right now so maybe I will wait and see what the results are. Diane I just saw on your other post that you are taking various medications for chronic pain...has it gotten worse since your treatment? What does one do if they feel better and then it returns...or is it supposed to be permanent? Had you had any relief from other treatments? I ask because I don't really get relief even when I have an anesthetic in my bladder so I am worried that this won't work as it also works locally, and maybe my problem is deeper in my nerves or in the bladder wall or something. [img]confused.gif[/img] Thanks

[ICNAsstMgrDiane]

cbsummer,

Actually, the BCG has helped me dramatically. The urgency and fregueancy is totally under control, voiding about 6 times a day. My bladder in general is doing great with the exception of neurological damage.

The high doeses of pain meds are used for the neurological damage including the severe damage in my neck and spinal column and the pelvic neuralgia and the "referred pain".

Diane

[cbsummer]

thanks for your input Donna. I go in this morning. I don't know why I am so nervous about this it is not like me. I had a horrible experience with dsmo I quess that nitemare is still in my brain thanks again .

[frani]

Hi

I just was told to have bcg and am wondering about the pain the dr. told me it would be very painful for those of you who had it was it painful? could you let me know

[Tami Stambaugh]

I am not familiar with this procedure!!! What exactly is it and did it help. Please post how you feel after you had it and let me know if it helped, I go to my doctor on Thurs. the 5th and would love to have another option to discuss with him!! Tami

[cbsummer]

I have had 4 treatments so far. The first two I had very little side affects. The second one maybe I felt a little sluggish. The third one was just like a uti which for me means pain. The first day I was in considerable pain. It slowly went away. I kept telling myself "no pain no gain." The next one was more intentse pain but did not last as long maybe 6 hours. I feel like I am getting better I have a much strong flow now and able to hold my urine longer. If it works I will go in every 6 months for 3 treatments. I was told they could reduce the dose if the pain was to bad. I have tried all other treatments except the interstim. I am going with this treatment with a very positive approach as a way to get my life back. Hopefully I will be in the percentive that it works for as nothing else has. The discommfort while getting the treatments is well worth it .

[frani]

I was told that you needed to be put under anesthesia were you put under???

[Jill L.]

I am really excited to see the trial results that they are conducting right now. Diane, I'm so glad it helped you so wonderfully! I see Dr. Christopher Payne next week and wanted to ask him about what he's seen so far with his testing of BCG. [img]smile.gif[/img] How do you know about your nerve damage? I'm guess I'm wondering how many of us have the same? How do nerves become so damaged and how would one know if they have nerve damage?

Thanks!

Jill <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[cbsummer]

they instill the bcg in the office a catheter is put in and then bcg. You ten are told to hold it for 1 to two hours while laying down and turning every so often. I found if I had nothing to drink before I go (about 4 hours) I am able to hold it for at least one hour.