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Worried Guy's Incontinence Journey - Sling

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Posted 12/7/2010 6:35 PM (GMT 0)
I have been reading the posts from TallGuy, Knotreel, MaleSlingProblems, BigBadJohn and others and have learned much. For a year, I've been walking behind these helpful, supportive guys as they blazed the incontinence trail while I wrung my hands and twisted my undies deciding what to do.
Today, 12/7, I met with the incontinence specialist and, in honor of Pearl Harbor Day, I have begun my own battle with incontinence.

For now, I will not mention physician names. If the outcome of this procedure is positive I will gladly go back and include them.

Jeff
----------
12/7/2010

I went to the meeting armed with my stats, comparisons and pictures of the three types of slings, a recent technical paper on results of sling surgery, and a list of questions.

Here are my pertinent stats.
Reason for visit:
Incontinence - 16 months after DaVinci surgery, J. Jxxxxx, 7/21/2009.

History:
Age 56 at DX, No symptoms, PSA 23.2, pT3aN0MX, EPE, PNI extensive.
Biopsy: 7 positive out of 12 - 5% to 70%, Gleason 3+4=7
One nerve partially spared.
1 Year PSA: <0.01ng/ml

Incontinence Status:
Cystoscopy 6/15/2010 "Short sphincter - about 1 cm. Wait 6 months and come back."

Continuous slow improvement to 14 months but has leveled out at leak of 100 to 130 ml/day
Bladder Capacity: 410 ml (morning only)
Pressure: 10” H2O, 25 cm H2O, 2.5 kPa, 0.36 psi -self measured.
Frequency of urination: about 8-10 times per day. Can last all night.
Able to fully empty bladder with slight push on perineum.
Dry when seated and in bed.
Dry in the morning until about 11 am.
Able to stop stream and hold, but only for 10 – 15 seconds.
Leak when walking, lifting, sneezing, coughing, blowing nose.

----------------------------------------
Questions & Answers for Dr. M:
What methodology do you use to determine if I am a good candidate?
- We look are the amount of leak and how much it afects your QOL. 4-5 full size pads per day is the limit.

Is there a graded questionnaire?
- Yes. It is a subjective measure of how much incontinence affects the patient's daily life.

How do you define success? Pads per day? Totally dry?
- A significant improvement in QOL. Reduced pad usage. Very few men are totally dry.

How many have you installed?
- 75 - 100 over the past 3 years.

What is your success rate?
- about 85%. But understand there is little chance of being toatally dry. You might still be wearinga small pad for protection.

Which sling? AdVance?
- Yes AdVance. InVance required bone attachments. AdVance is held in place by growing into the tissue. Less chance of erosion. However, it takes about 6 weeks to fully heal in place.

Data from the Sept 9 2010 paper by shows lower success rates with slings than originally published. Any comments?
- I have not seen this paper. May I have a copy? Possibly slings are being installed on patients who are not good candidates. and "success" is somewhat subjective due to varying patient expectations.

My expectations are clear. I want to leak 0 ml day, use no pads, have spontaneous erections a couple of times a per week, and loose about 5 pounds around my middle. But I realize that might be a tad unrealistic - at my age once per week should be acceptible.

The hospital will call me by the end of the week to set up the appointment for surgery.
The die is cast. The journey begins.

Jeff
Posted 12/7/2010 6:56 PM (GMT 0)
Interesting that he considers only 'improvement' not total continence as success. Also, you said:
'My expectations are clear. I want to leak 0 ml day, use no pads, have spontaneous erections a couple of times a per week, and loose about 5 pounds around my middle. But I realize that might be a tad unrealistic - at my age once per week should be acceptible.'

I suppose you were addressing us and not him? Would have been interesting as what his response would have been, other than peeing himself laughing and falling out of his chair.. tongue

Glad you are making a decision and look forward to sharing your journey with you. Good luck.
Posted 12/7/2010 10:30 PM (GMT 0)
Jeff I think it is time for the battle. Well be giving you a call this week!

Cajun Jeff
Posted 12/7/2010 11:00 PM (GMT 0)
Jeff,

I think you have waited long enough, and tried long enough, sounds like a good decision for you, and I hope and trust
it works well for you.

David
Posted 12/7/2010 11:32 PM (GMT 0)
Jeff,

sounds like a plan. you have earned some dry time. I dunno...I'd hold out for the daily erections.  Ask them to work on that while they're in there. you are a trouper - keep us posted...blow by blow...drip by drip. And PLEASE let it not unfold in Dr. Rex Morgan, MD time.

Before you take the plunge...one more visit?

paul

Posted 12/7/2010 11:38 PM (GMT 0)
Jeff,

Way to go, I am only saddened that one of the brightest engineers I have never known has not attempted to solve this problem through engineering. Oh well, some other less deserving fellow will be the zillionaire from the little implanatable valve that will result in 0 leaks, powered by solar or nuclear ( users's choice ).

Will you sell videos ?

Good luck my friend. We are with you all the way on this one. Just be sure you will be recovered adequately to make it to New Orleans and show off your dry pants.
Posted 12/8/2010 12:08 AM (GMT 0)
Jeff, I didn't get as far as you did with your dr., not much QOL stuff, just the pressure test and the whole discussion went past slings, pads, ect and straight to the AUS that I am scheduled to get 1/11. It sounds to me that you have a good shot at the dream WITHOUT the AUS, that is nice. I'll be pulling for you. The fact that you pee at all during the day is, I think, great, who knows you may continue to improve your sphincter and with the help of the sling........
Congratulations on your next step in gradulally undoing the damage. I guess we all, I know I did, expect to be just like "they say", couple of months dry at night and down to a couple of pads daytime and 6 months just one daytime pad for accidents. Oh, and your erections will take a little longer to return. I am begining to think that 2% class I am in is larger than I expected.
Well you should be happy to get going on this.
Ron
Posted 12/8/2010 1:21 AM (GMT 0)
Guys,

Thanks for the words of encouragement. I know I shouldn't be worried but it is good to know if this doesn't work at least there is a back up plan - the venerable AUS.

James - I will say one thing for the doc - he did not raise my expectation unreasonably high. I walked in there thinking "dry" is success, but after reading the latest papers I see that only a very lucky 9% of guys in my position can enjoy that.

Jeff - I'm ready for this battle. I make about 1000ml of ammo every day. I'd like to be able to fire it all at the target.

David - Yes indeed. I gave it my best shot. Now it's time to pull out the stops and get it done! It is out of my hands and in the surgeon's.

Paul - Who knows, maybe the extra support from the sling will improve blood flow and encourage things along. I can dream - I just can't decide if it should be a wet or dry dream. Tempting offer. We'll have to discuss it.

Goodlife - Hey! Don't think it didn't cross my mind. I figure a small, battery-operated Lee Hydraulic valve would do the trick. I'd go with a solar panel but in some states you could be arrested for displaying your equipment even if it is covered with a 100mW flex solar panel.

Knotreel - Yes, I can actually pee almost normally in the morning. However, my performance degrades to nothing by evening. It's a daily cruel reminder. But it means at least I have a chance. I don't have the schedule yet but they said it would be some time in Jan. Good luck with your adventure.

Thanks for your kind words.
Jeff (hopefully the soon to be not leaking one)
Posted 12/8/2010 1:23 AM (GMT 0)
Will be nice when you are no longer a "drip", Jeff. It will upgrade your status but lower the stock value of some of the mfg. of pads. Shame.
Posted 12/8/2010 1:37 AM (GMT 0)
David
:-) Yep! If anyone here is buddies with the CEO of Kimberly Clarke give him fair warning. Effective Feb 1, their sales will be reduced and they need to plan their manufacturing schedules accordingly.
If this surgery is successful I'm going to short sell KMB.
Jeff
Posted 12/8/2010 1:39 AM (GMT 0)
Goodlife already mentioned it bit I will second it. You will be well and dry for the GFMPH ...You can tell us all about it.

Cajun Jeff
Posted 12/8/2010 2:16 AM (GMT 0)
Jeff, when you finally design the ultimate flow control valve, a remote control is what I want, not having to learn the one handed method, just click the button. I think for maintence purposes the urine should be routed outside the body through the valve then back in and exiting from the proper place. Meanwhile I guess we will have to get to like our new body parts.
Be carefull about leaking market news on KMB, you might get martha's cell.
Posted 12/8/2010 3:20 AM (GMT 0)
Jeff,
Your doctor seems to think that few men are totally dry yet there are many here who actually say they are. I often wondered if that is the case. I don't wear a pad but I will have a drop or 2 escape some times which wasn't the case before surgery. ANyway, I think you have put up with the pads long enough and its time to get the leaking stopped. I wish you a dry future.
Posted 12/8/2010 10:40 AM (GMT 0)
Jeff - I'm hoping I'll be able to fly through the airports and worry that I have . My simple goal is to be able to travel through an airport and pass through security without having to explain a pad full of liquid on my crotch. A man can dream...

Knotreel - Since humans have the same electrical impedance as a sack full of salt water I can easily design a remote that would operate by sending an RF signal through the skin. The switch would be placed in an easily accessible yet discreet position. Hey, I think I've just discovered a use for men's nipples!
Maybe we can keep KMB in business by making thin, stick-on pasties to cover the switch.

Ed C - A lot of men are dry at the 3 month point - about 2/3. The 9% number quoted is for guys that are still significant leakers at more than one year and elect to have sling surgery. That's why it is so low. I have been plotting my leak performance for more than a year and I reached my nadir at 13.5 months. The line has been flat since then. Once my computed forecast indicated I would never reach 0 leak, I decided to fight back. Fortunately, guys who elect surgery are a relatively small group compared with the ones who get dry on their own.
Posted 12/9/2010 4:23 AM (GMT 0)
Jeff - that is the way to go if nothing else it will give your flow chart something to do anyhow all the best of luck and I hope that you get a long dry spell and can get rid of those pads
Posted 12/9/2010 11:31 AM (GMT 0)
Colin,
I feel a bit like I've given up - thrown in the (wet) towel - but the data plot does not lie. There has been no change in a while. I've even stopped posting my chart on the refrigerator!
Don't worry. I'm stiil recording mind you.
Before and after the surgery I'll make a new plot. It will be easy to determine the efficacy of the sling.

Congratulations on your latest PSA! I've been thinking of you.

(If you read the Rex Morgan MD and PCa thread you might have noticed I had a few posts about the politician's wild nights in Chiang Mai, Thailand. Did you check out the names and number? I always do my homework. 9/19 and 10/31 - Halloween )

Jeff

Post Edited (Worried Guy) : 12/9/2010 5:14:06 AM (GMT-7)

Posted 12/9/2010 1:14 PM (GMT 0)
Jeff- I know what you mean about giving up but a comfortable life is more important than your feelings what is happening to all of us with PC is out of our hands so you have to go with what you think is best for you and hope for the best
Posted 12/11/2010 7:45 PM (GMT 0)
The Hospital surgical center scheduling office called yesterday and put me on the schedule for 1/10/2010.
I will be getting the AdVance sling. That will require a 6 week limited activity period while it knits and joins with the tissue.
The InVance device would have had a significantly shorter limited activity period but it would require bone attachments which leads to a narrower "sweet spot" between incontinence and restricted flow than the AdVance.
The ball is rolling.

I need this now. Today my son and I loaded a trailer with about 4000 pounds of wood and I squirted every time I lifted a log more than 30 pounds. Frustrating.
Jeff (Hopefully the dry one on 1/11/11)
Posted 12/11/2010 8:53 PM (GMT 0)
Jeff,
As I told you a couple of weeks ago, I am in the exact place that you are in. Best of luck. I'm pulling for you and will be making asimilar decision very soon. Please keep us informed as to your progress.
Again good luck.
Len
Posted 1/4/2011 2:31 PM (GMT 0)
Update 1/4/2011 S minus 6 days
12/30 I woke up feeling like I might have a cold. Take some extra vitamins orange juice.
12/31 take advantage of warm day to unload trailer and split wood Yep. I have a cold.
1/1 take Benadryl to sleep, Nyquil, Mucinex. Ugh I hate this.
1/3 It hit my lungs. Go to Doc. Get chest Xray. Start antibiotic Amox TR-K 875-125 mg 2x per day.
1/4 Send in pre-op papers to surgical center. Nowhere on papers does it say the surgery. I write it in: AdVance Sling for Incontinence.

I must be better by Monday! I will be very disappointed if this is delayed.
Jeff
Posted 1/4/2011 2:44 PM (GMT 0)
Jeff, not a good time to ge the crud, get well fast!
Posted 1/4/2011 5:00 PM (GMT 0)
sounds like we are both in the "oh no ,not a cold" mode as we count down to our urinary fix up dates. sorry to hear you seem to have one but if you are going to get one now is not so bad as you do have time to recover. I am dodging everybody that is sick right now. I'll be driving to houston on your surgery day and you will be driving home on mine. I hope we both get lucky.

Ron

 

Posted 1/4/2011 6:09 PM (GMT 0)
Jeff and Ron,
I am excited for you both. You know my story all too well. You have definitely done this right up to this point.
I know you are aware of this but be careful during healing time. Watch the lifting or any straining... Even getting in and out of cars. Don't mess up the sling while healing. You will feel like doing more than you should do. Also be aware that when there is swelling down there you may be getting some support just from that.....meaning don't get overly optimistic too quick til the swelling goes down.
OK, I'm through preaching....now praying for your eternal dryness and erectile re....function.
Look forward to your success stories.
Carl G
Posted 1/4/2011 6:29 PM (GMT 0)
Hello Jeff,

Wise move writing in (AdVance Sling for Incontinence) on your consent form.

By doing so, you should be protected for the "bait and Switch" deception that I experienced 1 1/2 years ago. (Virtue sling out / AdVance sling in)

I remain 100% dry twelve months after being implanted being implanted with the AdVance sling.

You will need to be very cautious when walking on ice. I used a sharp pointed cane for added safety. Remember, one bad slip or fall could totally undo the effectiveness (tension) of the sling.

Very best wishes for a great outcome,

John
Posted 1/4/2011 7:00 PM (GMT 0)
David, On the bright side, the cold started early and should be over by the time of surgery. With the help of the amoxicillin it should clear up even faster.

Ron, I'll give you a groggy wave as I'm leaving the OR and you're going in. Good Luck to us both.

Carl, John,
I promise to take your advice to heart and not lift. That will be tricky since I have a wood burning stove that consumes 100+
pounds of wood per day in the dead of winter.

Today I did something so repugnant and reprehensible it pains me to even write it... Please, promise you won't think less of me... But, I... I... I.... ordered a load of home heating oil for my furnace. There! I said it. I feel so ashamed.

Jeff
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