Bulk Injection Therapy for male incontinence - Doctor referral in Florida + patient feedback from AU

windboater
windboater Member Posts: 4
in Prostate Cancer #1

Seeking:

Recommendations for doctors who have performed bulking agent injection therapy on males to treat urinary incontinence.

Feedback from diabetic Male patients who have undergone, penal implant / AUS operation. 

You don’t have to read the following, it’s just provided for (long form) context!

My current urologist (surgeon) believes my ESD is caused by nerve damage and refuses to even consider performing bulk injections to fix my incontinence. He is all hot to install a AUS=Artificial Urinary Sphincter which I am hesitant to do now but might late if no other alternative persents itself.  My symptoms don’t appear to be nerve related*; no tests were ordered to access the underlying  cause of the ESD (I understand these tests are routinely skipped today) and the published studies on AUS show far less trouble free success in patient with diabetes. A point my doctor failed to mention!

*Nearly all the studies of bulk injections therapy on men were conducted on men with nerve damage cased by radial-prostatectomies, (prostatic urethra removed). My urethra has never been cut and appeared healthy on photos after my HIFU procedure. I was not incontinent after the Hifu but because incontinent after repeated catheterizations, multiple bouts of antibiotic resistant UTIs and having large chunks of prostate material jammed deep into my bladder neck by a full bladder pressing down on it ( stopping the flow of urine).

Even today my sphincter goes through the motions of working properly at low levels of urine and bladder pressure.  I can step up to a urinal and release urine on command. This does not appear to be nerve damage.   I believe my incontinence is more like that seen in women caused by crushing, distortion or stretching of the bladder neck during child birth.  For this reason I feel my chances of success with bulk injections would be better than the average male study participent.

 

Besides, a non-invasive, nearly risk free and repeatable procedure should always be tried first even if the chances of success were approaching zero. I believe my chances are vastly better than zero and certainly better than my chances with a risky, invasive, costly, surgery that will leave me with a ticking time boom (foreign device) in my body. 

This is not to say I will not hesitate to take the AUS option if that was all that is left to me, but what’s the rush?

 

 

Comments

  • RobLee
    RobLee Member Posts: 269 Member
    edited May 2017 #2

    It was with great interest that I read your post, as I just had the AUS surgery five days ago. It did not go as smoothly as had I been led to believe it would be. There were compliactions (seems there always are) which extended the length of the procedure and necessitated unanticipated post-operative measures. But in my case I know that there was nerve damage as well as bladder neck involvement with my prostatectomy. And because I am T3B w/SVI I will require salvage radiation sooner rather than later. You have already been thru a lot yourself, but do not face the same ticking time bomb.

    I made sure when the AUS was first recommended that I kept in mind that this could be a salesman trying to sell me something. But there were no viable alternatives. The SRT requires a full bladder during each treatment, and this was the best solution. I too did considerable research into the device beforehand. I was aware of the high revision rate and asked the surgeon at our preliminary meeting. He said they are typically adjustments rather than failures. It was necessary for me to allow sufficient slack in my treatment schedule to provide for possible revision surgery and for healing, which the RT would impede. It may be that in your case, as it is with some others, "failure" means that the device fails to allow one to go pad free, or to significantly reduce leakage. In my case, this decision was necessary to allow me to progress to the next phase of treatment and halt the advance of this cancer.

    If you wish to contact me via CSN email (a link on the left of your screen) I live in the Tampa bay area and know of several doctors who preform various procedures. No promises though. Good luck with whatever you end up doing.

  • windboater
    windboater Member Posts: 4
    #3
    RobLee said:

    It was with great interest that I read your post, as I just had the AUS surgery five days ago. It did not go as smoothly as had I been led to believe it would be. There were compliactions (seems there always are) which extended the length of the procedure and necessitated unanticipated post-operative measures. But in my case I know that there was nerve damage as well as bladder neck involvement with my prostatectomy. And because I am T3B w/SVI I will require salvage radiation sooner rather than later. You have already been thru a lot yourself, but do not face the same ticking time bomb.

    I made sure when the AUS was first recommended that I kept in mind that this could be a salesman trying to sell me something. But there were no viable alternatives. The SRT requires a full bladder during each treatment, and this was the best solution. I too did considerable research into the device beforehand. I was aware of the high revision rate and asked the surgeon at our preliminary meeting. He said they are typically adjustments rather than failures. It was necessary for me to allow sufficient slack in my treatment schedule to provide for possible revision surgery and for healing, which the RT would impede. It may be that in your case, as it is with some others, "failure" means that the device fails to allow one to go pad free, or to significantly reduce leakage. In my case, this decision was necessary to allow me to progress to the next phase of treatment and halt the advance of this cancer.

    If you wish to contact me via CSN email (a link on the left of your screen) I live in the Tampa bay area and know of several doctors who preform various procedures. No promises though. Good luck with whatever you end up doing.

    thanks for your reply roblee

    hope things have settled out for you in the time it took me to reply to your post. I would think radiation would be a complcating facture. 

    you were my only reply so i guess everyones doctor told them not to try bulk injections as mine did. for the reasons i stated im still going to try it. im am interested in hearing your review of the AUS in a month or so after you get the hang of it. good luck to you and thanks again for taking the time to reply. windboater

     

     

  • tpelle
    tpelle Member Posts: 184
    #4
    bulking injection

    My doctor tried one injection on me about three months after continued dripping.  Absolutely no improvement was shown so he didn't recommend further injections.  I settled for the AMS800 and all is well.  tpelle

  • Clevelandguy
    Clevelandguy Member Posts: 1,180 Member
    #5
    Bulk Injections

    Hi,

    There is some interesting info on various internet sites about this, never knew it existed.

    Dave 3+4

  • windboater
    windboater Member Posts: 4
    #6
    tpelle said:

    bulking injection

    My doctor tried one injection on me about three months after continued dripping.  Absolutely no improvement was shown so he didn't recommend further injections.  I settled for the AMS800 and all is well.  tpelle

    thanks tpelle

    thanks i hope for better results. have an apointment at cleveland clinic next month.

  • windboater
    windboater Member Posts: 4
    #7
    thanks dave.

    most of it is comming from overseas. these are simple proceedures without a lot of profit. thats not the focus in the us. japan, brazil rushsa or

    ,south korea have all been working on stem cell injections.  i beleive also CC here in the us.

    its just a matter of time before the combine bulk injection with stem cell injections to get closer to the goul. each had different modality and each show progress towards continence. combine the two treatment sould work. the trick now will be to determain where stem cell teatments work best subcutainiously or next to the bone.

    its just a matter of time.

  • tpelle
    tpelle Member Posts: 184
    edited June 2017 #8
    windboater said:

    thanks tpelle

    thanks i hope for better results. have an apointment at cleveland clinic next month.

    Bulking

    Anxious to hear results of your bulking treatments at Cleveland Clinic.  

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