KW's Journey (Part 2)

  (Part 1)   KW’s Journey and battle with incontinence!                                         (click on link)    I had to start Part 2 because my first Journey is locked!  Thank You to everyone that has posted and been supportive of me and the other "leakers" here.   Runs in the Family!     I found out that my dad's brother has just be diagnosed with Prostate Cancer.  He is 67 years old.  I believe he PSA was 2.something.  He is going to the Dr. that assisted with my surgery.  I believe he is going to have hormone therapy for a short time then have the seed implants.  That is about all I know of his situation.  So far my Dad and older brother have checked clean.             I have not posted much of anything here because things are not improving on the incontenance front very fast.  I seem to be stuck at 3-5 pads a day.  Of course this all depends on my activity level and caffeene intake.  As a matter of fact knowing I would not be getting out yesterday and would be watching football all day I decided to make me a pot of coffee in the morning.  Yes, I drank about the whole part while reading the morning paper!  I had several Full bladders and as usual I could make it to the toilet holding it all in.  Maybe a few drips but overall had good control.  If I had been on my feet working around the house I'm sure it would have been a large pad count day!  Anyway, I still go to my physical therapist each month for a check up on the machine.  She said I made another good improvement last time.  I actually getting close to the low end of the range that control normally starts to happen.  There have been days at work that I have done better.  Using only 1 or two pads.  Acutally having the urge to go pee when my bladder is getting full.  So I guess there is hope.     On the ED front things are working well with 100mg Viagra.  Without, things sometimes work.  I continue to have some night time or early morning fullness at times.  I also use a condom to help with the leaking. Seems to work well.  The only thing I learned was when your "finished" you need to go "clean up" and get back in a pad becuase what is there will leak out when you shrink back up!  So much for the cuddle time!    At my last visit to the Dr. at the OU Medical Center the Dr. still did not feel total control would come back.  He did say the report from the therapist looked good.  Basically he said it was up to me to make the call to keep trying or to go with the AUS.  I told him I still want to wait until I get to 18 months or stop making progress with the therapy.    I go to my primary Dr. for another PSA test and check up in a couple of weeks.  I'm sure I'll be looking at 0.00's agian.  I'll let you all know when I do.         Will update you all later,         KW     43     PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.         Biopsy Sept. 27, 2006 - Diagnosis Sept. 29 - 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7         RRP on Oct. 17, - Nerves on right side saved.     All Lab's clear.  No Cancer outside prostate     Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006     First Post op PSA on Dec. 11, 2006  Undetectable 0.00     Office visit on Jan. 19th due to continued excessive urine leakage.     Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)     Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!     March 1st  Leaking has crept back up to 6 - 8 pads a day ???????      March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.     April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!     May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!     May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!     June 1st Start Bio-Feedback to try to control my leaking.     Oct 17, 2007 1 year Post Op - Still fighting moderate / Severe incontenance. Using 4-6 pads a day.  Erections usable....sometimes!...Better with 100mg Viagra   Post edited to add link   : ) Post Edited By Moderator (bluebird) : 11/25/2007 5:23:36 PM (GMT-7)

Hey GreenAcres, Sorry if I missled anyone about my "improvement". When I say 3-5 pads a day, that is full pads. At work I change more often to keep from having leaks. If the pad is just damp I only count it as a 1/2 pad. So if I were to count every time I changed a pad for any reason I would probably be using as many as 8 pads a day. Hope that is all as clear as mud!
Anyway, I just want to encourage the 5-10% in the long term leakers club to keep working at it and try to keep your spirits up.

KW

Hey KW,

Sounds like you are on the right path. The best news is the undetectable PSA!!!

How come you get a chick with small fingers and I get a defensive tackle for DREs?

Hang in...

Jim

KW - I still think you're doing so well! And you have our admiration for hanging in there emotionally through it all. Those "undetectables" are the best! We asked our doc about why the "less than" 0.1 or 1.0 or 0.001 whatever and he said it's the "stupid" way they print the report even though over on the other side it states the tolerance level is in the 0.00 range. It's all still undetectable. Woo-Hoo!

Hope you all are starting to melt up there!

    I just wanted to thank everyone out there that has followed My Journey.  I truly appreciate all the kind words and advice from all of you.  There are also a few of you that I consider Very Dear Friends.  You know who you are.  Thank You so much for being there to talk.  I would not have faired so well without you!

    For those of you just beginning your journey.  Try to keep your spirits up.  When they are down...lean on your friends here on HW. 

    Merry Christmas to ALL.

   KW

  Dear Kelly,   You are a very important member of this forum.   You continue to update us on a regular basis and sharing your strength (positive attitude) is a true gift to all of us and newbies to come.   Thank you dear friend for staying so close!!!   June will be here before you know it for your Alaskan cruise…  We enjoyed our Alaskan cruise in September 07…   so much that we’ve already scheduled another one for September 08.   Hopefully Berb will let us know how things are going with his treatment Thread started by Berb:    Acupuncture treatment for incontinence   Take care friend ~ and continue to stay close!   Gentle hugs and warm thoughts surround you. In Friendship ~ Lee & Buddy

   

    Worth a Try!

 

     Hey All,  Aproaching 15 months post op so I thought I'd send out an update.  Still using up to 6 full pads a day depending on fluid intake and activity level.  I still go once a month to my Physical Therapist for a bio-feedback check up.  Each month I have gone we see a little gain in muscle tone and striength in the pelvic floor area.  But I have yet to reach the level where I should start seeing control return. 

   After seeing some guys here try accupuncture I have decided to give it a try for a while.  I will have my first session tomorrow.

 (1-12-08)  I figure it can't hurt!  I am doing some research on the internet so I do not know how many sessions I will go to at this point.

    As far as my Plan!  I will continue with the PT exercises and check up's as long as we see a gain each month.  I will continue this until June due to personal reasons.  If things are not much better by that time I will consult my Dr. at the OU Medical Center to decide if I will go with the Sling or AUS to try to put an end to all of this.

    I appreciate everyone's kind words and support.  I hope my story will give those guys strugling the drive to keep working at it.  Although incontenance is no fun. And even if a attempt at a surgical fix is in the cards I have to remember to appreciate the fact that at this time I am still scoring 0's on the PSA!

    Good Luck to you All!

    KW

Hey Kelly,

Sounds like your trying all options before surgery. I think your a smart guy to try everything before it. I've had accupuncture plenty of times, most of the time you don't even feel it except if he hits a nerve directly, but that seldomly happens. Good luck and hang in there!

Your friend,

Pete  

Good luck KW,

You deserve to find a fix.  Your patience and courage have inspired all of us...

Jim

KW,

The best to you.  And thanks so much for the updated journey.  I will be one year post surgery in a little over a week and still no sign of slowing up.  My uro has said we will talk about intervention at one year to a year and a half, so I expect to at least start discussions with him about a surgical fix also.  I will see him on 02/28.  So keep us updated as soon as you know something.

Gene

Just a quick update on what the Dr. said today! Basicly considering my age he would recomend doing a sling to see it that would give me the relief I am looking for. He did say that 1 pad day for a few drips and squirts would not be out of the question. There is also the option to firm up the area with some collagen injections after the sling is in a while if I am still leaking more than the 1 per day. The AUS is also a option I still require more control.
He does prefer the newer AdVance sling that does not require and screws into the pelvic bone. The only down side to having him do it would be that I would be only his third "Male" sling. But, he does the female slings on a routine basis. He said it is basicly the same surgery once they make the vertical incision under the scrotum. He did do a sling on one of my wife's Aunt's and everything went well.
We discussed going back to the Dr. at the OU mecical center. My Dr. actually was offered a job by him in his last year of residency but decided to go into private practice. One thing that concerns me about the University is that there will probably be several other Dr's in there and they will all want a little part of the surgery. As he put it, "there will be alot of cooks in the kitchen stiring the pot." Not that they would not do their best to give me the results I want, But I just do not like the idea of being a learning tool!
My Dr will be assisted by another one of the Dr.'s in the Urology Group they belong too! So, I am leaning to going that way. I will call tomorrow to ask his nurses to see if there is any way I could have one of his other "male" patients call me to talk about his sling!

Brodie, No, I have not considered waiting for the stem cell thing. The Medical community moves way too slow approving something like this. Also, My sphincter is working and closing. My problem is basicly due to the lack of support for the urethera and bladder. I do not think any work on the sphincter itself would give me any improvement without additional support.
Will keep you all informed,

KW

    Decision Made!

 

    I have decided to have the AdVance Sling installed on Feb. 22nd, 2008.  I would like to thank all of you that have supported me through all of this.  I will let you all know how things go.

    KW

Hey KW,

That's great news. You have been through the mill and its time to fix the problem. Good luck...

Jim