Hey Everyone, I'm over 3 months post op and I was encouraged to start a page by Mama Bluebird. As you will see I have not had the best of luck with my Journey.
I hope it helps you other guys that are having a rough time of it also.
IN THE BEGINNING
My Journey actually started with a visit to my Family Dr. for a Physical because I thought I was having heart trouble in August of 2006. He did a standard physical with a blood panel work up. After a heart scan and a stress test by a Cardiologist it was determined that my heart was fine and I was just a little out of shape. But, I did receive a referral in the mail to an urologist because my PSA was 5.7! I had no symptoms of any trouble with my prostate.
I went to see Dr. Philip Jones the last part of August to check out the slightly high prostate reading. After hearing my history and getting some background information Dr Jones asked if my Family Dr. had done the “dreaded” DRE. I jokingly said “No, he saved that one for you since you’re the expert!” After the quick finger rub Dr. Jones said that he felt some firming but no lumps or bumps. He decided the next step was the Free PSA. The results for that were back in about a week and it was another higher than normal reading (I don’t recall what the exact number was). Since that was 2 higher than normal test the next logical step was the Biopsy.
After telling me what all was involved with a biopsy I was scheduled and sent home with some information about the procedure. about a week or so later I was back in the office for my Biopsy. Of course, the worst thing so far had been giving myself a Fleet Enema. Something just didn’t seem right about squeezing a bottle of liquid up the hiney hole! After getting to the procedure room I was told to take everything off below the waist and cover up with one of those great paper drapes! I noticed the probe in the corner with the condom on it and thought Oh Boy!!!! The Dr. and a nurse came in to get started. They put the probe in place to start the biopsies. So far it wasn’t all that bad. He said you will hear a click (like one of the finger poke things they use to take a small sample of blood) for each core sample. You will also feel some stinging. For the most part it wasn’t all that bad. I guess after several years of being a welder you get used to little burning pains. Just not usually in your rear! Two of the samples stung quite a bit. The Dr. said those were the deeper ones. I had 12 samples in all taken.
After the biopsy I didn’t really have any bleeding or pain. But I was told about the bloody fluid during the next several orgasms. Now, that was a sight that a guy (or woman) is not used to seeing. The bloody brownish discharge was rather strange. But there was no pain!
I’m not sure how many days it took to get the results back, but I was told to call the nurse after a certain time on that day. I took a break from work and called from the boss’s office. When she got on the phone she said something like, “Some of the samples came back with some cancer in them” She said their normal next step is a bone scan to make sure nothing has spread out of the prostate into the bones. I was put on hold so she could set up the test. They told me the test day and said they would send me some instructions. I hung up and called the wife to tell her (we work in the same facility). She sounded more upset than I was feeling at the time. She said she was going home for the rest of the day. I decided to stick it out since there was only about 2 hours left on my shift. I then called my mom who is a Colon Cancer Survivor. She was quite upset. I guess hearing your baby boy has cancer would be hard to take. I spent most of the rest of the day talking to the guys and gals at work because they all knew I was waiting on the news. Everyone was sorry to hear it and wished me luck dealing with it. Of course a few of them said they would be getting drunk tonight!
LET THE TEST BEGIN
Sometime toward the middle of September I was to have my bone scan. The only thing I was worried about was how they get the radioactive dye into the bones? To my relief it is just an injection in the arm and the gets into the bones through normal circulation. I was given the shot and told to be back at the hospital at a certain time for the scan. I came back when told and was put on an x-ray type table. Then I just tried to stay still while the machine slowly scanned down my body. I was told to call my Dr. on a certain day to get the results. When I called the nurse said two of my ribs showed something but they were not sure what it was. I was asked about old injuries or broken ribs. I have never had broken ribs but I did train in Tae Kwon Do for several years. So it could easily be an old injury. At least, I hoped so.
I was scheduled for another series of chest x-rays. A few days later the technician took several shots from many different angles to see if the same spots showed up. I called the Dr.’s office the next day. Good News. The ribs were all clear! I was then given a date for my Cancer Consultation to talk about my options.
From the time I was told I had Cancer I did what we all did. I jumped on the Internet. As everyone knows, there is more information out there than you can ever read. I read all about the open Retropubic Radical Prostatectomy, the older Perineal Radical Prostatectomy, and the new Da Vinci Robotic Radical Prostatectomy. I also read about the Radiation Seed Therapy and about Chemotherapy. Needless to say my head was hurting from all the information. Not knowing anything about the disease I was thinking the easy way to go was with the Radioactive Seed Therapy. Being that I was so young I though there was no need for surgery!
When the day for my consultation arrived it was decided that my wife, mother-in-law, and my mother would all be going to the Dr. and into the room with me. You know, I was out voted when I objected! We were all called back to a exam room. I jumped on the exam bed with that great paper covering. The nurse took some basic info and said the Dr. would be in shortly. Remember, up to this point I was thinking there would be some mild Radiation or Chemotherapy.
I knew things had changed real quickly by the look on the Dr.s and his P.A.’s face and their body language as they came into the room. He started the talk by saying he hated having these talks especially with someone my age. By the way, My Dr. is only about 3 years older than me! He said it kind of hit home to him when he actually took a look at the results. He went on to show us that 3 of my 12 cores had cancer in them and some of them were graded at 75% cancer cells. They were all on the left side of the prostate. He went on to say that at my “young” age the best thing to do was to be aggressive and get the prostate out of my body. BAM that is when it hit that I knew this was going to be more than I had thought! He advised me to have a full removal of the prostate. He said he was experienced with the open RRP. We asked how many he had performed and he said at least 300 but never really counted. We went over what was involved with the RRP. We talked about the incontinent and Erectile Dysfunction (ED) issues. He said with the location of the cancer that he would not risk it by trying to save the nerve bundle on the left side. He said our first mission was saving my life. But he would do all he could to make it possible for me to regain all my functions. This was when I learned what the prostate actually did and about the dry orgasms from then on! I think the wife had a harder time going over all of that with both her mother and my mother in the room than I did. As a matter of fact, I had to bite my tongue to keep from making some smart remarks during this portion of the talk. I guess because I have grown up and been around metal workers and welders all my life. There is always a come back for most everything! Without a question the Dr. said that if I wanted a second opinion he would suggest a number of Dr.’s that he proceeded to name. He even said if it were him he would go to a specific Dr. He said this decision was all about me. Not his ego. He went on to say if I wanted to go to one of the “big” prostate cancer centers such a Mayo or Johns Hopkins he would support that too. He said he would still be my Dr. for all the follow up care if I did. We discussed the Da Vinci and Perineal surgeries also. The Dr. said that his next opening would be in a few weeks on Tuesday, October 17th and that he would pencil me in for that day but to call and let them know.
We left the office with our heads full of information and a decision to make. The Dr. said to take my time to decide. But don’t put it off any longer than I needed too. We all left to go eat dinner. The feeling at the time was that we all liked the Dr. We all liked the fact he was close to my age and could understand the concern about incontinence and ED. He had also done some bladder surgery on our daughter and one of my wife’s aunts. We liked the fact that he was well respected in the community. We like that the other Dr. that would assist him was a friend to another family member of ours and was also about my age. We liked that the hospital and his office were both only about a mile from our home. Over all we were feeling good about him being my Dr. and doing my surgery. If I remember correctly I called the next day and told the nurse I was ready to get the ball rolling.
I started poking around on the internet again. Reading and looking at everything I could find. I watched one of the Da Vinci clips on one of the sites. I started talking to everyone I knew. Hearing their stories and considering their advice. The more I read the more I got confused. But I had narrowed it down to My Dr. and the open RRP and the Da Vinci RP. I was most afraid of the 4 to 5 inch incision. I checked on the Da Vinci here in Oklahoma and found only one machine and two Dr.s that did the surgery. I called one of them and asked if I had a consult and wanted to go with them how long would the wait be and they said three months.
As my surgery date approached I was still uneasy. Was I making the right decision? about a week before my surgery I called my Dr. to see if I could get in to see him to go over some more questions. They got me in 5 days before. I told him that I was worried about the incision, the bleeding and his ability to see during the surgery. I told him I was looking at the Da Vinci sites and reading all their advantages. He said, Yes I would have a 4 to 5 inch incision. But the Da Vinci patients would have four ½ to 1 inch puncture holes and one incision that was about a 1 ½ inch long. I asked about the bleeding and the vision. He said they had done so many that they normally have no problems with bleeding. As far as vision he said all the structures they deal with are large enough to see without the need for magnification. When asked about the Da Vinci tools and wide range of movement. He said his best tools are his fingers. He likes to be able to feel and touch what he wants too. He went on to say he does some lathroscopic bladder and kidney surgeries. But for this he still likes the open RRP. Yes, I know he was promoting the surgery he performs but I felt good with all his answers. I left the office feeling good about him and his abilities and looking forward to getting that new Hi-Def T.V. for my recovery time. And getting on with my life after the surgery.
OOOPS…I DID IT AGAIN!
The evening after my last talk with the Dr. I was at home when my Mother-in-Law dropped by to see what the Dr. had said. As we were talking our Min-Pin mix dog was jumping all over mother-in-law. I went to pick the big 15 pound dog up off the sofa and it happened. My back got a little twinge in it! I gasped a little and sat back in my recliner. Mother-in-law asked what happened? I said my back popped a little. Well, after having a ruptured disk surgery 12 years ago and almost once a year spasms I knew what it was. As soon as she left I got on the ice pack. I knew this was not good 5 days before my abdominal muscles were going to be spread apart for surgery! I went to bed on the ice pack. The next morning (Friday) I could hardly move. But I had to go in to work to clear some things up before I took off for 6 to 8 weeks for my surgery. I went in and did what I had to do. I left after two hours. I went by my old Chiropractors office and talked to the new one that is in there now. They normally require x-rays before they will touch you but they gave me a little adjustment to help me out. I also called a massage therapist and got in that afternoon for a massage. The one I wanted was not able to get too me so a new one did it. The only problem was that she didn’t speak much English. She did a regular full body when I actually just needed back work done. It helped a little. My regular lady was able to get me in on Saturday morning but only had 30 minutes. She concentrated on just the back and it really made a difference. I spent Sunday alternating between ice and heat. I did the same on Monday while I was home while I waited for my time to start the dreaded bowel cleansing for my surgery!
TODAY IS THE DAY
October 17th, 2006. The day of my open RRP surgery has arrived. The back was better but not back to 100%. But I was not backing out now. I took a good hot shower right before we left for the hospital. We arrived as instructed to get ready for my surgery time. As you would expect the first thing to go were all the cloths and on with the open back gown. We met with the anesthesiologist and the nurses took all the information they needed. The Anesthesiologist came back and gave me that shot to relax me. In a few minutes they were there to get me. Off down the hall we went. Somewhere between there and the O.R. I was already out of it! The next thing I remember was the recovery room!
ON THE OTHER SIDE, THE REAL JOURNEY BEGINS!
I really don’t remember much about the recovery room, mostly drifting in and out. I finally started waking up after I was in my room. It was sometime after . At first there really wasn’t a lot of sharp pain, just soreness. Yes, the back was still hurting. You know, hospital beds aren’t all that great either. I was not ready for the sight of my penis being shoved inside me by that catheter tube, not that there was a lot of it before, and the sight of the “boys” being swollen and purple.
Now the fun starts! It seems like every few minutes someone, mostly women nurses want to look at things. Not exactly the prettiest sight to see. And definitely not the most manly thing to show them! Kind of a kicker to the male ego! They were also emptying the catheter bag and drain bulb fairly often.
It was not long before they got me up to walk. I had to wear those big hospital diapers because I was having bloody urine come out of the penis around the catheter.
Some time during the evening or during the night I had a bleed start in my belly. The bleeding clotted up the catheter and caused my bladder to swell. Now the pain set’s in.
Other than a ruptured disc in my back I have never had pain like that, my whole body shaking from the pain. I was on the maximum amount of morphine I could get. They started coming in hourly to flush the catheter to keep it draining. Yeah, they take a big tube of saline and flush it in and out of the catheter line sucking the clots out. This continues most of Wednesday
The Dr. had checked in with me on Wednesday morning and said everything looked good. He was able to save the right side nerves for erections. He expected a good recovery even with the clotting issue. He said it did not appear that anything had spread outside the prostate but would know for sure when the lab work came back. He said he took the lymph nodes and seminal vessels just as we had discussed and they looked good.
I’m not sure when it was but they saw that my blood count was low so they decided I needed some blood. They eventually ended up giving me two units. I think this took most of Wednesday evening and Thursday morning.
Thursday and Friday (post op day 2 and 3) were about the same. Still in a fair amount of pain, now mostly from the back hurting. I was still walking the halls and getting up to drain the catheter bag when it needed it. The Dr. was still in every morning and said thing were looking good even with the bleeding and clotting issue. On Friday he said that I should probably stay for the weekend. He was moving and the Dr that assisted on the surgery would be checking with me over the weekend.
Saturday and Sunday (post op day 4 and 5) the Dr. that assisted on my surgery said things continued to get better but he would rather let my Dr. release me on Monday. I was still having clear urine leak around the catheter. Over all I was feeling better now.
Monday (post op day 6). My Dr. came in and checked me over. I really don’t remember what the Dr. said about the leaking around the catheter but I guess they were not worried about it. He decided I was well enough to go home. They came in and changed the big catheter bag out for a leg bag. The nurse also gave me my instructions for taking care of the catheter. The nurse then came in and took my staples out and put the about 10 strips over the incision. Then I was on my way! Like I said before, just a 1 mile ride home! As soon as I got home I wanted a long hot shower. It was kind of a shock when I saw myself in the mirror. I was purple and blue all around my groin and hip area. But man was it great to take a long hot shower. I settled into my new home, my recliner. As far as clothing all I could wear was a couple of hospital gowns that we had brought home. I also became quite creative with ladies pads and tape to help contain the leaking around the catheter line. I was now wearing the Depends Belted undergarments. I was still having a lot of back pain. I was so tired of wearing hospital gowns I finally got one of my wife’s striped pastel colored gowns to wear. Yeah, real manly looking but at this point who cares? I guess the wife did! The next day or so she bought a thin robe and sewed up the middle for me to wear.
Sometime after the first couple of days at home I was having the urge to push urine out of my bladder, like I needed to pee real badly. I called the Dr. and they had me come it to check things out. They looked at the catheter and said to try to keep it pulled a little tighter to help it try to seal off. They also put me on some med’s for the overactive bladder. It seemed to help with things.
GETTING RID OF MR. HANG
about two weeks after surgery date (one week after release from hospital) I was scheduled for a cystogram to make sure the bladder was healed and not leaking before the catheter was removed. As usual when I got back to the x-ray room I had to loose the pants and put on a gown. I told them I was still having some leakage around the catheter so they put some towels down on the table before I got on it. The then unhooked my leg bag and attached the bottle of solution for the x-ray. When they opened the valve to let the liquid flow into the bladder that was a weird feeling. No pain, just weird. I could feel some of the liquid leaking out around the catheter so I told the radiologist. Now, she wanted to see if she could move it around a bit to get it to seal better. She did. You know by now it was no big deal to have a strange woman looking at my privates! They took several shots from different angles. They even added more fluid to get the bladder really full. That was somewhat uncomfortable feeling, like having to pee really badly.
During most of the shots I could see the screen she was looking at. I noticed all the black squiggle lines in there so I asked what they were. She said that was all the sutures. WOW. Now I see how much work the Dr. did in there. Since the Hospital has all their x-rays on the local computer network the radiologist called my Dr. for him to log on so she could ask him something. When they were done they drained to fluid from my bladder. They knew I had an appointment in two days to have the catheter removed if everything was ok. I asked what she thought. She said I would have to wait until I go to my Dr. but not to be surprised if I had to keep it in a little longer! Not what I wanted to hear.
I go to my Dr. two days later. He said they saw a little seepage from the repaired areas. They wanted to wait another week to see if it would heal up. If not they might have to go in and touch things up! So I wait another week.
I go back for the second cystogram. This time everything went much quicker. I also had an appointment the same afternoon to have the catheter removed if everything was ok. I show up and get the good news. I get to have it removed…FINALLY, November 9th, 23 days after surgery! Now, I wonder how they do it and who does it. You guessed it. The nurse! She comes in and says the easiest way is for me to be standing. She hands me some tissue for the dripping. I drop the pants again! She releases the fluid out of the bulb that holds it in. She says to take a breath and exhale. As I do she slides it out. No pain for me, it just slid out. She said I could get dress and she would be back. Glad that was over. The Dr. comes in and goes over everything. Said everything seems to be healing well now. He warns me not to do anything for another month. No lifting, pushing, pulling….nothing. He said he knows I feel great but your body still needs time to heal. He goes over the Kegal exercises with me. Saying to do 10 reps with 10 seconds on and 10 seconds off three times a day. He gives me 25 mg samples of Viagra to take every other night to help with healing, blood flow and nerve function. He says not to try to have sex for another month. They set my next appointment for December 11th. That will be my 1 month post catheter and 1st post op PSA.
FIRST POST OP PSA TEST
I follow my Dr’s. advise and don’t do anything for the next month. I do start walking. I go out to my work to see the guys and gals about once a week. On nice days I go to the golf course just to putt. I don’t bend over or squat down to line up the ball. I just enjoy being out.
I go to see the Dr. on December the 11th. Of course the first thing they want is a urine sample. Then one of the medical clerks, a young woman near my daughter’s age asks how things are going. I tell her I feel great, no pains. I tell her I’m using the depends under guards. When on my sitting or lying down I’m mostly dry. When I stand or walk I am soaking a pad in about an hour. She then asks if I have had any erections or feelings of erections. Just what I want to discuss with a young woman! I tell her no full erections but some firming. She writes it all down in the chart. The Dr. comes in and goes over everything with me. He said for one month post catheter I am in the average range as far as being dry when laying down or sitting. He said to keep doing the Kegals and it should continue to get better. He asks about the erections and I tell him the same thing I told the young woman. He said that sounded good. He said he would write some prescriptions for 25mg and 100mg Viagra. Continue the 25mg every other day for two more months. The 100 mg are for as needed when trying to have sex.
I ask about going back to work. The Dr. asks, when do you want to go back? I told the Dr., Well, being that I have great a great sick leave program at work I wanted to be off until January the 3rd. I was also thinking about going back on half days for the first two weeks. So he said that sounded good to him and he would write me a note. But he said he was going to put me on a 10 pound limit for the first two weeks. I also ask about playing golf and he said I could. Just take it easy. Don’t try to walk or use a push cart. Great News for Me! He said to hang tight and they would have one of the assistants come in to draw the blood for the PSA test.
I call back in a few days when I was told to check and get the good news. The PSA was undetectable 0.00 on the graph. Great News!
RETURNING TO NORMAL
The heading to this section may be a little misleading. I guess I should have named it Attempting to Return to Normal. The reason I say this is because of my continued leaking. But on the bright side, I went out to play golf on December 12th. The first day after the Dr. said I could. Remembering to take it easy and riding in a cart. After almost two months without touching a club I go out and shoot one over my personal best, a score of 10 over par on a par 70 course.
Back to the recovery, I start walking daily at the mall. I walk an hour the first week. The next week I walk two hours. I’m still soaking a depends under guard after about an hour on my feet. I just take a break after one hour and change my pad. I keep thinking it will get better as I walk more. I’m feeling great. No pain, just trying to deal with the leaking. For the most part I can keep it under control by just remembering to check. I have had a couple of accidents by waiting too long, nothing major or embarrassing, just a few wet spots.
On the sexual side of things, my wife has had no interest in trying anything due to the leaking. Not even the shower or bath trick that has been mentioned on here. That leaves me to deal with things on my own! I have had some success when using the 100 mg Viagra. I would not say it was a full or usable erection but there was some significant increase in size and firmness. The orgasms are another thing. They feel just as good if not better than before. It is just strange to not have any fluid along with it. But you know what Forrest Gump would say, that’s good…one less thing!
I continued with my walking but had not seen any improvement with the leaking. Actually the more active I have got, the more I have leaked.
I returned to work on January the 4th for half days. Everything has gone ok. I just keep track of time and go check or change my pad each hour just to be safe. Most of the time they are not soaked but I change them anyway. On January the 16th I returned to full days with no lifting restrictions.
On Thursday, January 18th I called the Dr. to ask about exercise restrictions and to let them know how much I was still leaking. The nurse said the Dr. wanted to see me!
I went to see the Dr. on Friday, January 19th. He was concerned that I had shown no improvement with my leaking. After working ½ a day and having my continued leaking because I had been on my feet the entire morning I was only able to give about a ¼ inch of urine in the sample cup. The Dr. said the first thing he wanted to check was to see if my bladder was actually empty. One of the assistants came in and did an ultrasound on the bladder. It was empty, that was good. Then he said the next thing to do was a cystoscopy. Yeah, like a catheter with a camera on it. He wanted to see what the bladder neck was doing. The Dr. said it could be scar tissue pulling on the bladder neck. But he really didn’t think it would be scare tissue. He said the next option would be a Cottigen injection into the bladder neck area. They normally use this on women with incontinence, but it could be helpful to me. It helps bulk up the tissues in the bladder neck to give added support. The only thing is that they have to do a 30 day skin test to make sure you are not allergic to it. One of the assistants came in and put a small dose of the material under the skin in my forearm. They tell me to watch it and let them know if it starts to turn red or itch like an insect bite. They schedule the cystoscopy for February 20th. The Dr. comes back in and says to try to stay patient cause these things take time. He ask about the erections. I tell him about the wife not being interested and he also suggests using the shower or condoms to contain the leaking. I tell him I have had some success doing things myself and he said it sounded like I was on my way healing. He said to just keep trying!
So at this point I’m still waiting for the end of my 30 skin test. I’m ready to find out what is going on but not looking forward to having a scope run up the penis. I also forgot to ask how they get the injection where they want it at. But maybe I don’t want to know.
I’ll update you all when I know more.
Posted 2-20-06 Results of Cystoscopy and possible Cottigen injection!!!
February 20th – Four months Post Op. I was in to see the Dr. today to try to figure out what is causing my continued incontinence. I knew he was going to do a Cystoscopy to get a look at things. After the normal urine sample I was taken to the procedure room. The “young, as they all seem to be” medical assistant told me to disrobe from the waist down, lay back on the exam table and cover up with that large paper towel..hehehe.
When I was done she came back in and injected some numbing medication inside my member. It was more of a small tube and not a needle to insert in and inject the medication.
After a few minutes the Dr. came in to get started. I was surprised he didn’t have an assistant with him! He dipped the first few inches of the scope in some lube then started to insert it. Yeah it stung a little but nowhere near like a bee sting. Just mainly pressure. We both looked at the screen as the scope ran up the urethra. Everything was looking fine. Got to the sphincter muscle and he liked the way it looked. He had me do a few Kegels to see how it was working. He said it looked Great!
Right after that he continued to push it toward the bladder. There was a small ridge of scar tissue that he said might be part of the problem. The location of it could restrict the flow of urine and cause the bladder to not empty. I kind of hurt when he had to work the scope past the scar tissue.
Into the bladder! He said everything looked good in there. Hurt a little more as he worked the scope around. I actually said it looked like he could have used another set of hands just to hold the scope while he worked to controls to move the tip of it around. (We use a scope like these called a bore scope to look inside of components during assemble and inspection where I work. So I know they are a little cumbersome to use and operate.) After looking at the inside of the bladder he started backing it out. He took another look at the sphincter muscle. Had me do a few more Kegels to look at it one last time. The he removed the scope!
The news! Overall the urethra looked good. The sphincter muscel looked and worked fine. He was somewhat concerned that the scar tissue might not let the bladder empty like it should. During the scope there is a saline fluid flowing through the tube. The Dr. wanted to have a ultrasound of the bladder, a flow check, and another ultrasound to make sure the bladder was emptying like it should.
I had to wait in the exam room while another patient was in the ultrasound room. The came and got me in about 10 – 15 minutes. By then I did need to pee! They took an ultrasound of the bladder. They had me do a flow test. For this they set a beaker on a monitor pad under a potty char that is open through the center of it like a funnel. It measures the amount of urine, the time it takes to fill, the starts and stops of the flow. This tells them how good your total flow is. Afterward they do another ultrasound to see if your bladder is empty.
Everything came out good.
So, the Dr. said with the way the sphincter is working and that my bladder is emptying with a good flow rate he did not really want to do the injection. He wants me to double up on the Kegels to try to build up that muscle. He’s not really happy where I am with the incontinence at this time. But, he does not want to mess with the sphincter with the injections.
Next Appointment is May 22 for follow up and 3rd Post op PSA, unless I see no improvement in the incontinence a couple of weeks.
After the test I went home and just sat around and started this update. I was sorer than I though I would be. Stinging when I had to pee the first couple of times.
But hey…I walked out with another big bag of Viagra samples!!!!
Will let you know how things go…… KW
posted: 03-06-07 Results of 2nd Post Op PSA Test.......0.00.....YEAH!!!!
posted: 03-29-07 Too Much Fun!!!!!!
After having two leaks at work in two weeks. Back to soaking a Depends Underguard pad in just over an hour while on my feet I had had enough! I called the Dr. to let them know that the Detrol LA was not helping at all. The nurse called back and said the Dr. was ready to try the collagen injection if I was. Duhhh.....Let me think.....Heck Yes!!! Let's do it!!! I was scheduled for March 29th.
Arived for my appointment to a crowded waiting room as usual! Only had to wait a few minutes and was called back. Was given my instructions to go leave a urine sample and empty my bladder. Then disrobe from the waist down, get on the proceedure table and cover with the large paper drape. The medical assistant came back in, (Yes, another attractive 20 something young woman!) and applied the numbing medication to and inside my penis. It was applied with a swab to the outside and a plastic tube applicator to the inside. Yeah.....it kinda stung when it was done.
The Dr. and his lead nurse came in a few minutes later. I think I was actually starting to snore! Strange!!...this time he pick up a rigid scope and started to prep it. He said this time it would be a little more uncomfortable since the injection probe is a rigid one! They hooked up the saline solution to the scope, lube the end and In they Go! It was quite uncomfortable with the scope going in. Alot of pressure and a little stinging. We got a good look at the sphincter, just a little scar tissue. Dr. said it was normal and did not cause any concern. Dr. continued to slide the probe into the bladder. All looked good. Now for the injections!!!
I had to look away from the monitor for this! I did not want to see the needle poking me in the sphincter. Dr. said I would feel several stings and burns as he put the injections around the area. He wasn't kidding. Like having a bee stuck in your bladder!!! Also, with the rigid scope there was a lot of pushing and tugging pressure for him to get the correct angle of attack. After the first vial of colligen was done he removed the probe. He had me stand at the end of the table and cough! All the time the dr. and nurse were looking to see if there was any leaking. Of course as backward as I have been through all of this, I barely dripped when relaxed coughing. But when I held the sphincter tight and coughed I squirted. They looked at each other and said that is just the opposite of what they normally see. Dr. said if I was up to it he would like to do another vial to seal things up! I said we got it goin now...let's do it right! So, back on the table. Dr. hooked up another vial. Lubed the probe and here we go agian!!!! Same series of stings and burns. Dr. made a mention to the nurse about getting a good one at 12 o'clock. He said normally in women it isn't needed but in men it really seems to help alot. Of course 12 o'clock was a bit painful to get the angle he needed to do the injection. After the second vial was in I stood agian for the cough and drip test! (you know it's strange standing there naked having two people look at your penis while you cough over and over agian!) All dry, no leaking while coughing either relaxed or tightening the sphincter. Dr. said that looked good. The nurse said to go into the connecting bathroom and pee then get dressed. Just a little blood when the stream started. Did not try to do my start and stop exercise, It was burning a little. Got dressed and waited a few minutes. Nurse came in and said "sounded like a good strong flow". I said I did not notice any drips after I squeezed a few time to make sure bladder was empty. She gave me a antibiotic tablet to take with dinner. Said I was to come back in 1 month unless I started leaking agian. If I do, call them and they will want me back in. For what I don't know, but I hope this will dry me up!
Have been home a while just sitting and reading the paper. Only went to pee once. Did not notice any drips on the way! Put on a new pad just to see if I have any leakage. Plan on taking it easy tonight. Real test will be at work in the morning...if I go...heheheh. Forecast for rain so I might as well go in. Golf is out of the question!! Having storms and tornados in the area right now!
Hope my story helps some of you continuing to fight the leaking.
Will keep you informed....see you all in the chat room.
posted:04-17-07 One more Time!
My leaking had increased back to using 6-8 of the Depends Underguards for Men while at work and on my feet most of the day! At home I would use 1-3 depending on my activity level. I called the Dr. to let the know and he wanted to take a look and do another round of collagen. The proceedure when the same as my previous posting. I was told that if I started to leak any keep some notes of when, how much, and activity level. This will give them more information to use in deciding what is next if the leaking returns. Today he did not specifically mention the "bladder sling" but he did say that if this round of collagen was about all we can do with it!
After the injections we talked a little about why I may be having a harder time with the leaking than others. One positive thing I keep getting is each time he has scoped me he continues to talk about how well the sphincter looks and works. He said I do have some scar tissue (behind the sphincter in the bladder neck area, if my annatomy and memory is correct?) that may be causing the back end of the sphincter to stay closed when I'm up moving around. He told me about one of his first solo RRP's back in medical school. He said the Professor said it looked great, nothing could have gone better, but for some reason this patient had trouble with leaking. He also said he has had patients that things did not go quite as well but for some reason they were dry within all the normal time frames! Basically he said each body is different and will heal and act it's own way.
So, we are going to see what happens to see if this series works more than a few days like the last time! Will let you know what happens.
Posted: 04-24-07 Now we wait!!!!!!!
I started leaking agian about noon the first day back at work after my second collagen injecton. Needless to say I was not pleased! The next day I actually had to leave and change pants because I had a soak through! I called the Dr. that evening on the way home from work.
When the nurse called me back she said the Dr. did not thing any more collagen was going to be an option since I was not getting more than a day or two relief.
Now what? The Dr. said it was up to me if I wanted to wait it out a while longer to see if it comes around or if I am completely sick of it we could talk about "surgical options". Of course, I'm sick of it but I'm not going to leap into surgery. I have seen alot of information saying that those of us that do have leaking trouble can have a turn for the better in the 9-12 month post op time frame.
I'm going to try to wait it out until I get near my 1 year date. As much as I hate it I don't want to compound my problems if another surgery still did not fix the problem. I am looking for another urologist to get a second opinion on my situation while I wait. Right now I'm leaning toward calling the urology department at the Oklahoma University Medical Center.
If anyone has any other recomendations anywhere in the area please let me know.
May 14th, Second Opinion on my Incontenance at OU Medical Center.
Here we go agian, I went to see the Director of Urology at the Oklahoma Univeristy Medical Center, Dr. Daniel Culkin. After reviewing my records and talking to me about my incontenance and activity level he gave me his opinion. He said that at my time frame (7 month post op) and with my ammount of leaking he did not think it would dry up on it's own. We talked about the bladder sling and the atrificial sphincter. He also talked about the penile clamp.
At 44 years old I don't want to jump into having another surgery. I asked him about Bio-Feedback. He really doesn't think it will make a great difference but is willing to let me try it. He also said to work the kegeal's as much as possible. Does not feel I can over do it. Talked about several different ways to do them. Fast, slow, long, short, just mixing it up all the time.
As you can imaging I did not leave a happy camper. Them having given me a video about the artificial shpincter and going to mail me more information on the bladder sling and penile clamp.
I have made more of an effort to do kegeals all the time. Everytime my mind is not occupied I am trying to do at least a few contractions.
I will start my first Bio-Feedback session on June 1st.
Will update you all as things go along!
Posted 06-02-07 First Bio-Feedback Appointment
June 1st I had my first visit with the Physical Therapist for bio-feedback. What an eye opener. The Kegeal exercises I have been doing have been only working the sphincter, abdominals, and hip flexors. I have not been working the pelvic floor muscles. Although the sphincter is very important the pelvic floor muscles are just as important. They are the muscles that support and hold the bladder. She also said there are stages to building and strengithing the muscles. Laying / Sitting, Standing, Walking, Lifting. Of course I am starting at the sitting position. I also asked how log she had worked with male incontenance and how many therapist in the Oklahoma City area do this kind of treatment. She has been doing this kind of treatment for almost 15 years. She said there were only about 5 other therapist in the City that also do this kind of treatment. I also asked how many men she had treated that had to go on and have a sling or implant to regain contenance. She said she could only remember on patient that did not regain control and that he simply would not do his exercises!
To start start with the therapist explained to me how to stick the monitor pad on the inside of my leg up agianst the pelvic floor area in my groin area. I went in the bathroom and attached the pad ran the cord out of the leg of my shorts and went to her office. Once she hooked the lead into the machine and got her computer set she had me do a Kegal the old way. There is a scale used to measure function on her program. A good kegal is a 15-30 on the scale. The old way I was only getting a . something....less than 1. What a shock! The therapist then had me start to work on feeling the right muscles. First I was sitting in a office chair, she told me to to put my heels together then slightly pull my knees toward the center and think of lifting under the scrotum area. A completely different feeling that the "drawing liquid with the penis" feeling. I was a very subtle feeling. After a few attempts she got a softball size rubber ball and one of those stretchy bands. She had me hold the ball between my knees and put the band around my knees. Then I started to try them agian by slightly pressing out on the band. Then she had me do some slightly squeezing inward on the ball. All the time I was doing them i was constantly getting around 6-7 on the scale. She then had me stand and try some standing. Right away the muscle would fatigue right after it contracted. So she said we will stick with the seated position for the first week or so.
So I left with insrtuctions to get a rubber ball and start with 5 minutes each way of 10 seconds on and 10 seconds rest. I also had hope that in the end I will regain my control. I will let you all know how things go.
Posted 06-10-07 Third Post-Op PSA and Second Bio-Feedback appointment.
The first thing is 0.00 for my third post-op PSA. I guess those are the numbers that should really matter. Not my Pad Count!
Went for second Bio-Feedback appointment. After getting hooked up she had be do a set of contractions. She was happy to see I hit the correct muscles right away. She could also tell I had been working all day because the muscles fatigued quickly. After a series of exercises and talking about how the muscles actually work I was told the next visit will be in two weeks. I am to keep working the exercises atleast two times a day. A few more if I can, but I need to completely rest the muscles in between. She said trying to stay tight all the time will keep the muscles fatigued. Rest is just as important as working the muscles. They need time to repair and strengthen between sets just like any muscle you work.
Even though I have not seen any improvement in this first week of working with her she is very confident that with time and work I will be able to regain control. All I can do is work at it and hope so!
Posted: 06-25-07 Third Bio-Feedback Appiontment
I went for my third appointment with the therapist on Friday June, 22nd. After getting hooked up to the machine she had me do a set of Kegeals. She said I showed some good improvement in the muscle strength. She added a standing exercise to my routine. She said it will take more strength before I will see much of any differance with the leaking. At this point all I want to see is any improvement at all. As long as something improves it gives me hope. Will let you all know what happens next time!
Posted: 07-09-07 One Month at a Time!!!
I went back for another visit to the Therapist for a Bio-Feedback check up. I showed another increase in the strength of the pelvic floor muscles. But there has still been no improvement it the leaking while standing or walking. The therapist said that I still need more muscle strength before I will see a difference. She added having me do some exercises taking slow steps contracting the muscles as I shift the weight from one foot to another. I go back for another bio-feedback check up on August 13th.
She is still confident that in time I will get control back. Sometimes I wonder! But, seeing the graphs on the computer showing the gain helps.
She is sending a report to the Dr. at the University and too my primary Urologist. I go back to the University on August 16th for another consultation on my incontinence issues.
I will let you all know if things change between now and then.
Holler at you in a month!
Posted: 08-18-07 10th Month Post RRP.....No Changes Yet!!!
I thought I would let you all know what has been going on with my situation.
I am still soaking 6-8 Depends Guards for Men a day. If I sit or sleep I am dry. I retain urine and get a full bladder. I can then actually make it to the bathroom with good control without leaking. But once I empty and start my day of mostly being on my feet I never retain much urine while standing and walking. I guess it's a good sign I sit and sleep dry!
I have been seeing a physical therapist that uses bio-feedback to help isolate and gage how the pelvic floor muscles are working. She says each time I come in I show some improvement in pelvic floor strength. But so far no change in the ammount of leaking!
On the 16th I went back to the OU Medical Center to see my second opinion Dr. He said even with the marginal improvement I have shown in the two months of therapy he believes I will still need a surgical fix for my incontenance. Just what I wanted to hear!!! The Dr. also said if it were him he would suggest having the Artificial Urinary Sphincter instead of the Sling due to my ammount of leaking.
My plan is to keep working with the therapist until she say's she has done all she can do. Also not jumping into another surgery until I pass the 18 month post op time frame.
I have also started a daily log of number fo pads used. This way I can actually see if the ammount starts to gradually go down!
Will let you all know if anything changes.
Posted: 10-15-07 One Year Post Op......Still Leaking!!!!!
WOW,,,,has it already been 1 year. Or should I say...Has it ONLY been a year. Sometimes I wonder!
Good News first. All PSA's have been 0.00. Secondly I have been having regular usable erections with the use of Viagra 100mg. I have also had some in the early morning hours without medication.
The Bad News. I'm still fighting the moderate to severe incontenance. I am currently using about 5 pads a day depending on my activity level, fluid, and caffeene intake. My physical therapist now thinks most of my problem is the tightness of my hip area and the scar tissue inside the abdomen muscles. This tightness will not let the pelvic floor muscles work correctly and evenly. But each month when I go in for a session I keep making improvement in the over all muscle tone. She still thinks with work I can get control without any more surgery. She now has me on several stretching exercises to loosen everything up as well as my kegeals to strengthen the pelvic floor muscles.
So, I guess the game plan is to continue with the exercises and the therapist to gage the improvement. I will stay with that until I reach a point where I am not making any improvement. At that point I will consult both of my Dr's to decide on which option would have the highest probability of giving me relief.
Thank YOU ALL so much for your support and advise this past year. There are a few special friends that I chat with on a regular basis that I especially wish to thank for listening to me whine and helping me along. I do not know where I would be without you!
I will let you know if anything changes.
Post Edited By Moderator (bluebird) : 11/25/2007 5:06:51 PM (GMT-7)