Yes, the trial has been getting delayed so it is disheartening and I'm confident Dr. Young is the most discouraged.
The takeaway for me is to seek the Physical Therapy component (6,6,6), especially considering the trial w/out surgery did achieve results regardless.
Jim, i have contacted...
crispy1981
Senior Member
Last Activity: Today, 11:13 PM
Joined: 27 Sep 2012
Location: Iowa, USA
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Last edited by crispy1981; Today, 10:14 PM. -
Stephen, I PM'd you. Wanted to get some more details on your routines if you have a chance? -
Lunasicc42, I believe the study DOES include quads doesn't it? And they were also able to awaken the CPG. Are you eluding to the fact the upper extremities do not achieve recovery? If yes then I agree. But perhaps a therapy that approximates how the lower limbs recover movement could be developed... -
Thanks KLD.
Btw, this oxybutynin is aggravating my constipation. Is Vesicare or another med 0n option to resolve that? Or should i perhaps seek botox? -
KLD, I haven't yet...still trying to manage my intake and find sutiable catheter kits so i can leave the house for appointments.
To ensure i'm understanding...these tests are to determine bladder pressures at a variety of capacity levels? Then i'll know what capacity levels are safe? Eg. if... -
Day 9 and i'm starting to settle in with a routine and my bladder seems to be leaking less.
- only leaked once in past 3 days.
- bladder seems to hold better now.
- Still have some hurdles - got some sample catheters that are self contained/travel size.Leave a comment:
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Jim when do the webinars start up again or have i just been missing them/not getting the email invitations? -
Thanks Stephen...sorry i got you in trouble! Will avoid any more discussion on bowel in this thread. -
Thanks McDuff -
1. I cannot find the catheter you use? https://www.coloplast.us/
2, Is Vesicare more expensive the other meds?
3. You said after 19 yrs you still 'miss'? I'm assuming you leak or does 'miss' mean you experience some unpleasant side effects of a full bladder and need... -
Wow, having similar injury levels does beget similar function. My bladder holds the same capacity i too can rely on AD but not sure that is a good idea but...it is helpful/takes out the guesswork. For me however, i cannot yet rely on no leaking (leaked again yesterday and cathed out 500)...drank too... -
For me, the most prohibitive of these devices is the bulk as you mentioned. I expect there isn't anything better or it would be posted here? -
Anyone use a wearable product that senses bladder volume?
https://www.dfreeus.biz/
https://novioscan.com/...Leave a comment:
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Thanks Stephen! I'm 40 post t3/4. And YES my bladder is the achiles heal of my existence and always has been. Sounds like botox is the answer for you. My Urol clinic does promote botox also.
Stephen can you share your CIC routine? Intake/outtake?
I didn't leak yesterday so i'm... -
Thanks KLD - i'm continuing to work on the Intake/outake program if that is the main ingredient to maintain bladder health/avoid high pressures and leaking. So far every 4 hours is too long for me. I had a lot of AD this morning between first and second cath...was in a meeting and had to wait...but... -
Oddity, how do the pressure tests work and how do they perform botox injections?
Do you follow a routine regarding intake? What does that look like?
I am baffled how some seem to never leak doing CiC. I am still trying to tweak good routines. I wish there were a device that... -
Recent flow report:...
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Wow! a lot of moving points to consider!
1.I did not get a UDS done so is there value in getting one done after starting the oxybutynin therapy?
2. Do you think its pragmatic to first concern myself with input/output and correspondingly learn my optimal cadence for CIC? My country... -
Endo, sounds like you do also have leaking problems on occasion. Do you wear a drainage system in addition to the CIC program? -
Hello KLD, thanks for your insight!
1. I'm on 15g Oxybutynin.
2. No Urodynamics were done prior to starting CIC.
2. I was cathing intermittently while on condom cath and my volumes were 400-600.
3. yes, I have mild to moderate trabeculation and 2 diverticula
4. I... -
Endo, do you rely on botox instead of using meds? Or do you use both?
So, are you saying that you haven't been able to solve the leaking or knowing when to cath? 🤔
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