can continence-related biofeedback be learned without going for "sessions"? what is biofe

Hi -- This is likely a question best directed at my urologist/surgeon at Hopkins, but I'm not keen to travel to Baltimore, an hour away, if the essence of biofeedback -- whatever it is . . . however it works -- is something a man can learn on his own without venturing out of the house? Or something I could maybe easily find someone teaching in the M.D.-saturated, metropolitan Washington, DC, region?

I want to learn what there is to learn about it, before going for a class, or a session with my urologist about it. Is biofeedback something that is only happening between my ears? Or does it involve my somehow interacting with a little black electronic box? Is it something I buy the electronic gear for? Or I have a few sessions with a "teacher" and he/she has the electronics? And 2-4 sessions with the teacher (and the black box) is sufficient to train my plumbing to do what I want it to do: be dry, have control, be fully continent again?

I know there are men here on the PC Forum who have tried biofeedback and benefited greatly from it. Cannot think of their names this instant. Incontinence is starting to get "old" for me. I thought I had a breakthrough a couple days ago, that I was dry, but it was just a quirky single day I was dry, and now I'm back to needing 7-10 pads to get through a typical day. Really don't want to be incontinent for the "average" 3-12 months two-thirds of all men are incontinent post-surgery. Am I remembering this statistic rightly? It's only 24 days since my catheter came out, which isn't even one month. "Existence, I would welcome a miracle if you can manage it. Thank you. Happy Valentine's Day! And if things are such that I'm to be leaking and dribbling and surging now and then for many more months, I'd like to know whatever there is to know about biofeedback. Thank you!"

I'm thinking biofeedback means training my body not to squirt whenever I get up from a sitting position? Maybe something no more complicated than some muscle squeezes, Kegel-like, whenever I stand up? Bending down to pick anything up is also a trigger, as for some reason are the first 5 minutes after stepping out of the shower. Just cannot stop myself from leaking and dribbling pretty steadily for those 5 minutes. It's always a mad race to get dried off and get into a diaper ("underwear" sounds so much better) with a Guards pad.

This is an invitation to please share what you know about biofeedback (to end incontinence after PC surgery). And if you live in the Mid-Atlantic region like I do, do you know anybody who teaches it, particularly in the Washington, DC, region? Do the major medical insurers typically cover biofeedback sessions? Or is this typically a non-covered, out-of-pocket, expense? Thanks.

Bill Positive

________________
[Sig Block revised 1-27-15]
age 70
diagnosed 8-8-14
PSA history: 1/08 4.6; 4/08 6.4; 7/08 3.5;
12/09 2.5; 2/11 4.4; 4/12 3.2; 4/14 5.4;
8/14 5.1; 9/3/14 4.9; 10/13/14 5.7

Pathology Report (9/12/2014, Johns Hopkins,
Jonathan Epstein) on 7/28/2014 biopsy slides.
6 cores Gleason 6 (3+3),
A. prostatic adenocarcinoma, 90%, 80%
B. prostatic adenocarcinoma, 90%, 90% ("perineural
invasion identified in this case") [Interesting the final
pathology report below found no actual "invasion"
beyond the prostate capsule, very glad of that!]
C. prostatic adenocarcinoma, 90%, 90%

1-12-15 RRP at Johns Hopkins
1-14-15 Final JHH Surgical Pathology Report
Interpretation & Diagnosis
1) pelvic nodes, left (excision); three lymph nodes and
associated fibroadipose tissue, negative for tumor
2) anterior fat pad (excision), negative for tumor
3) prostate and SV (prostatectomy): histologic type:
adenocarcinoma (conventional, NOS)

Gleason score - dominant nodule: 3+4 = 7
Tumor extent: moderate
location: (dominant nodule): left, posterolateral, apex, mid
location: (secondary nodule): [none noted]
Local extent: organ confined
Margins: negative
Seminal vesicle invasion: none
Lymphatic invasion: absent

Pelvic lymph nodes (includes all parts):
all 3 lymph nodes are negative for tumor

Extent of invasion (7th Edition, AJCC, Staging):
Primary tumor: pT2: organ confined throughout

Summary margins: negative

A representative tumor block is 3-LBP
A representative normal block is 3-LDA

Note: Pending KRAFT of 3RBA

[signed by JH pathologist 01-15-2015]

What Prat said - you would do it with a physical therapist who specializes in pelvic floor rehab. I would suspect most major hospitals could direct you to a reputable clinic. To get it reimbursed you may need referrals from your GP or uro.

Bill, sorry you are having a tough time, glad you can unload it here. Hey, whatever works. Keep the faith.

Hey there BillyBob --

Loved your very funny, serious too, post. Your description went a long way to de-mystify the hocus pocus I've felt around biofeedback ... the phrase sounds like it could describe just about anything. You describe the objective well . . .

[-- . . . the electro-stimulation to wake the exact muscles up is done, you do some more anal calisthenics as you watch on a graph which tells you if you are squeezing and keeping exactly the right muscles contracted or not and measures your progress by amplitude on a graph. Since you can see it all on the graph as you Kegel exactly the right muscles, supposedly this is biofeedback that trains you to clench up just perfectly in a highly skilled fashion without contracting the wrong muscles.]

Sounds easy enough. I think I'll give it a try.

[ -- ... Usually performed by an attractive young girl, whether that is good, bad or neutral]

Definitely good! I had an experience at Johns Hopkins during the RP week where Miss America was tasked by her superiors to train me in the correct way to do maintenance on where my catheter passed into Willy. Hold Willy like this, she demonstrated. Clean Willy and the first 4-5 inches of the catheter like this. Using Q-tips and a jar of Vaseline, apply the Vaseline jelly to the tip of Willy like this. Of course the bright lights, hospital environment, the absence of music, candles, kind of ruined the moment's erotic or romantic possibilities. She did seem to appreciate the humorous potential of the moment, and we shared a good laugh over it, without either of us saying what was so funny. Aside from the RP the day before, definitely a memorable highlight of my Johns Hopkins stay.

[ -- ... was turning up the voltage, as I was also trying desperately not to pee on her- but then again life just gets weirder and weirder since the gift of PC came into my life, so you never know!]

You've captured the simultaneous weirdness, hilarity, and seriousness of what we prostate cancer men go through. A week ago I had the distinct feeling I was getting pretty soaked down there, so zipped into a lockable stall at the local Whole Foods, and changed both my "underwear" or diaper, and exchanged the very wet pad for a dry one, all in the space of 2-3 minutes, tops. Two weeks ago I replaced a soaking wet pad with a dry pad at, well, a long red light, while driving my car. It's just amazing what some vehicle drivers do during long red lights! I keep a supply of those black doggie poop bags in a pocket at all times, I don't leave home without 2 or 3 dry fresh pads stuffed in available pockets. The offending wet pad goes in the poop bag in seconds, the dry one is put in place, and no one is the wiser. I dispose of the poop bag at the next good opportunity.

[ -- ... This all goes on for some weeks until you are considered well trained and then you get your diploma, hopefully as Valedictorian or summa cum laude or something, and they send you out into the real world with a hearty "good luck".]

Can't wait for my chance to be well trained and sent out into the real world. What that "real world" looks like these days seems to get ever weirder, as the weeks go by. I'm constantly being "rescued" by my sense of humor as I consider the improbable weirdness of the whole incontinence experience. Pre-surgery, I could never imagined being incontinent was anything remotely like the real experience actually is. Oftentimes I feel like I'm back in the crib, I'm six weeks old, and I don't pay any attention to my peeling. Peeing is like breathing in and out. It's completely natural, normal, what's all the fuss about? Certainly nothing to be embarrassed about in the slightest. It helps knowing thousands of men in America at any given moment are going through exactly what I'm going through this moment.

[ -- ... I think it [biofeedback] helped some, but I would not call it like night and day.]

BillyBob, your frank, honest, feedback is priceless.

[ -- ... I had to stop training in the middle for a trip to Netherlands/Belgium/France (was totally unable to take advantage of the famed Red Light District in Amsterdam for variety of reasons, thus I could only appreciate the girls on display in the windows from afar, as I usually had an urge to pee my pants when looking at them, or not looking.]

The sacrifices we are asked to make each post-surgery day are very large, and unless you've had the experience yourself, or something like it, it's just plain hard to explain to the uninitiated.

[ -- ... Just pretty much the urge to pee all day while touring these countries. That was extremely miserable, but I think being forced to be up and walking a lot did me more good than anything. Since I could pack only so many pads, I tried hard to make them last, and with every possible batroom stop, I would end up with one extremely soaked and heavy pad each day. When I got back stateside a week later, I now had the urge to kiss the ground in the USA because free bathrooms seemed to be every where, YAY USA!]

Most impressive, your organization, discipline, and managing the whole wet/dry pad thing. I've had the luxury of being close at all times either to (a) my car, or (b) my home. So I haven't really been tested yet managing the pad situation, making everything turn out well. I'll get my first sort of "on the front lines" test this Sunday afternoon when I photograph a family for the April cover of an area lifestyle magazine. I'm so used to crouching down and twisting at the hips, and generally throwing my body around the room with one thing and one thing only on my mind -- to take a great photo.

I can just see myself packing up my gear for the shoot. Camera. check. Flash, check. Spare batteries, check. Depends "underwear"/diapers, check. Depends "Maximum absorbency" pads, check. Should be "exciting" the whole experience. A real test of can I do my photographer job and not wet my pants!

[ -- ... But though I resumed my schooling with the anal probe as soon as I got home, I noticed an improvement in my condition compared to the week before. So cattle prod or a week of walking and holding it in a LOT? You tell me. That was last May or June, I graduated and despite a nostalgic urge to do so, have not gone back to visit my Alma Mater and teachers, and continued to slowly improve to 90-95% better. But still need a shield for insurance when out of the house(usually pretty dry when I remove it about 8PM), and must pay attention to clenching of the buttockal region if I make any sudden moves. Usually successful in that, but not always.]

Thanks for sharing all about your experiences with this, Bill Bob, and I'm so glad you seem to have gotten a real good benefit and major improvement in your continence because of the biofeedback training. I'm inspired to give the biofeedback training a go.

[ -- ... Good luck with this!]

Thank you, my good friend!

Bill Positive

________________
[Sig Block revised 1-27-15]
age 70
diagnosed 8-8-14
PSA history: 1/08 4.6; 4/08 6.4; 7/08 3.5;
12/09 2.5; 2/11 4.4; 4/12 3.2; 4/14 5.4;
8/14 5.1; 9/3/14 4.9; 10/13/14 5.7

Pathology Report (9/12/2014, Johns Hopkins,
Jonathan Epstein) on 7/28/2014 biopsy slides.
6 cores Gleason 6 (3+3),
A. prostatic adenocarcinoma, 90%, 80%
B. prostatic adenocarcinoma, 90%, 90% ("perineural
invasion identified in this case") [Interesting the final
pathology report below found no actual "invasion"
beyond the prostate capsule, very glad of that!]
C. prostatic adenocarcinoma, 90%, 90%

1-12-15 RRP at Johns Hopkins
1-14-15 Final JHH Surgical Pathology Report
Interpretation & Diagnosis
1) pelvic nodes, left (excision); three lymph nodes and
associated fibroadipose tissue, negative for tumor
2) anterior fat pad (excision), negative for tumor
3) prostate and SV (prostatectomy): histologic type:
adenocarcinoma (conventional, NOS)

Gleason score - dominant nodule: 3+4 = 7
Tumor extent: moderate
location: (dominant nodule): left, posterolateral, apex, mid
location: (secondary nodule): [none noted]
Local extent: organ confined
Margins: negative
Seminal vesicle invasion: none
Lymphatic invasion: absent

Pelvic lymph nodes (includes all parts):
all 3 lymph nodes are negative for tumor

Extent of invasion (7th Edition, AJCC, Staging):
Primary tumor: pT2: organ confined throughout

Summary margins: negative

A representative tumor block is 3-LBP
A representative normal block is 3-LDA

Note: Pending KRAFT of 3RBA

[signed by JH pathologist 01-15-2015]