My Green Light prostatectomy
Posted , 12 users are following.
Background: 64 years old, good health overall, have had urinary issues since my 20s. Also suffer from IBS and Interstitial Cystitis. In the mid 90s was diagnosed with chronic prostatitis and with BPH. Was put on doxazosin (Cardura 4mg), and have been taking it to this day. Have tried some other alpha blockers (Flomax, Rapaflo, Alfuzosin) but nothing worked better for me than doxazosin. I’m REALLY tired of the side effects, though. As I’ve gotten older the side effects seem to bother me more.
I’ve had 3 TUMTs, in 2009, 2011 and 2015. The only one that really did any good was in 2011. The last one I had in 2015 did nothing. Note for those that are considering TUMT ...if during the procedure you do not feel some decent ‘heating” in your prostate, it’s not doing any good. In 2011 I felt practically nothing and the results were nothing. In 2011 things got really warm ... so warm they had to put an ice pack on me during the procedure. For 3-4 days after the procedure I couldn’t hardly sit ... but it did make a difference in my flow and I was able to cut back to taking just 2mg per day of doxazosin, which reduced the side effects. Symptoms started returning in 2015. I had my last TUMT in July of that year. My urologist said to me they just received a software update for the machine (he uses the Urologix Cooled ThermoTherapy machine). The update was supposed to make the procedure easier to tolerate while maintaining effectiveness. Well, it was easier but it did nothing. I felt about 2 minutes of good heat (during a 45 minute procedure) and that was it. No soreness afterward. Total waste of time. So if you don’t feel the heat, it’s not doing you any good.
Since the TUMT didn’t work I began considering other alternatives, including Green Light Laser. I talked it over with my urologist and he went over the procedure and the risks and benefits. At the time I was having some cardiac issues that I had to have resolved, so I put off the surgery for about 2 months. When I went back to my Urologist he announced that he was very high on a new procedure called “Urolift”, and that it was what he would choose for himself. Unfortunately, my Obamacare plan in California (Anthem) refused to ok the Urolift, considering it “investigational”. Even after I appealed they refused. Didn’t matter that both Medicare and Medical approve it. So at this point my only other choice seemed to be Green Light.
My Urologist booked my surgery for May 19th in a local hospital. I did the normal pre-op blood, EKG and chest X-ray, along with a urine culture. My Urologist uses the Green Light XPS 180W 532nm system. His policy is to do the surgery and put a catheter in place for 7 days. Not thrilled with that. However, since I also have Interstitial Cystitis he gave me a break and said the catheter would be removed on the 4th day. Prior to the surgery I was urinating ok with the help of Cardura. I have continued to take Cardura since the surgery.
After surgery wasn’t very pleasant because of the after effects of the anaesthesia and the catheter. Had quite a bit of post-operative pain. They gave me a Percoset before I was discharged. The pain quieted down after I got home. So for the next 4 days I shuffled around the house, toting my urine bag wherever I went. Urine very pink first 24 hours, then mostly clear the rest of the time. My bottom was so sore from the laser and the damn catheter that I couldn’t really sit anywhere without pain. I’m a pretty skinny guy and I don’t have much padding on my bottom end. In addition, where the catheter enters the penis it gets very raw and irritated. I used Neosporin ointment, but that didn’t help all that much. The end of my penis was really raw after 4 days of the catheter. And what’s up with the size of the catheter! Sucker was as big as my finger. I didn’t think something that large would fit up there. Another reason why I was so damn uncomfortable.
Catheter was removed on the 4th day. They filled my bladder with 250cc of saline before removing it. I had heard that pulling out the catheter was very painful, but it really wasn’t that bad. Then they wanted me to see if I could pee out the 250cc. I could, but it was like peeing through a piece of spaghetti. But I did push everything out, so they sent me home. I have read stories of what it would be like to urinate after the laser surgery and I was expecting to have a big improvement in flow, but stinging and some pain. I have experienced the exact opposite. I continue to have a very slow stream, but no pain or stinging. I am now 13 days out from my surgery and my flow is still very slow, although improving somewhat. It’s really tough during the night time hours. I will wake up with a full bladder and it will take forever to dribble it out. I don’t understand why my flow is so slow. I am urinating much more slowing than pre-surgery. I’m hoping it’s just due to the trauma of surgery. But at this point I am VERY DISAPPOINTED in my results. I sure hope it gets better.
I have urinated a little debris, mostly during the first 3 or 4 days. Also saw a few very small blood clots, but nothing in the last 3-4 days. I’m assuming the lack of debris and blood clots is partially due to the 180w laser that was used.
At 12 days post surgery things appeared to be getting a bit better, at least during the daytime hours. I did a urine flow test at my Urologist’s office and it was actually pretty good. Just a little better than my pre-surgery flow. However, I continue to have issues urinating at night. I don’t mind the urges, but it is just so difficult to urinate.
At 14 days post surgery I had to take my wife to the VA Emergency (about 40 miles away) because of ongoing issues with a condition she has called Medullary Sponge Kidney. Apparently she had been passing 2 or 3 stones over a period of the last 3 weeks and it gave her a kidney infection and lots of pain. She had to stay in the hospital overnight. While at the hospital I tried to stay hydrated but it’s difficult to do because of what was going on, worry, etc. However, I was not having any problems urinating while at the hospital. I returned home and had the typical slowdown during the night, but not quite as bad. The next morning when I first got up I tried to urinate and it was difficult, but all of a sudden something let go and the flow markedly increased. But now I had a sensation of pain near the tip of my penis. Not major pain, but it hurt. About 45 minutes later I went to urinate again and out popped a fairly good size scab. Pain at tip of penis was gone. Well, that was good I thought to myself. So I went about my day, returned to the VA to pick up my wife and tried to drink fluids, especially after I returned home.
The next day (day 16 post surgery) after I got up I started to experience REAL difficulty urinating. I just felt like there was something blocking the path. I could really feel a strain on my bladder. This was a Sunday, so no calling the doctor. I toughed it out most of the day, but each time I attempted to urinate it only dribbled and it hurt my bladder to push. So I went to the local emergency room, where they diagnosed me with a UTI and wanted to send me home with a prescription for Cipro. I had to insist they insert a foley catheter in me because I could not urinate (never thought I would actually ask someone to stick a catheter in me. They finally relented and put a French 16 Foley in me, although they wanted to take it out as soon as I was drained. The damn visit to the ER cost me $325 (thanks Obamacare) I didn’t want to have to come back to have them do it again.
After I informed my doctor’s office on Monday as to what happened, they told me to come in on Wednesday, when I had a regular post surgery check up scheduled.
I met with my doctor on Wednesday (19 days post surgery) and he expressed sympathy for the problem I was having and that how the post op was going was exactly why he wanted to try Urolift before doing the Greenlight. However, he is still confident I will be able to push through the issues I am currently having and end up with good long term results. He wanted to have me continue with the catheter for another two weeks, although I talked him into just one week. So I will go in on post op day 25 (9 days with current catheter) and have it removed and see what my flow looks like. One thing I have to say is that the current catheter I am using is a lot more tolerable than the one I received after the Greenlight surgery. My Urologist told me they use a French 32 size after surgery (he called it a garden hose, with a smirk) and the one I have now is a French 16, about half the diameter. Makes a BIG difference in comfort. I understand the reason for the large catheter after surgery (pass blood clots easier), so I am thankful the smaller size is working for me at the moment.
On day 25 I had the catheter removed at the doctors office, and again I could urinate, although still slowly. One surprise is that when I did the post foley urination at the doctors office I peed out two rather large stones. The nurse asked me if I had a history of kidney stones, which I don’t. Upon subsequent examination of the stones they were determined to be PROSTATE stones, 4-5mm in size. They were probably uncovered by the vaporization of the prostate tissue. Was able to urinate ok all day, but around 9pm everything stopped again. Back to the emergency room to have another foley inserted (another $325 visit). So my doctor said to keep the foley in for another week. I had it removed on day 32 at the doctors office. However I asked my doctor to allow me to self-cath in case I stopped up again, since I did not want to have to go back to the emergency room. He agreed and his nurse taught me how. Sure enough, after being able to urinate at a reasonable rate for around 12 hours I started slowing down to a dribble. At 3am I could not go at all. So I did a self-cath, and after that was able to sleep 2 ½ hours, and was able to urinate ok (although still slow) once I woke up. The next day I was able to urinate ok until around 10pm, and I had to do another self-cath at around 11pm. I got up several times that night and was able to urinate normally, and it continued when I got up the next morning. Since that time my flow rate has INCREASED for the first time since the surgery, and I did not have to a self-cath that night.
So on day 28 I finally have some positive results. I am hopeful my flow continues to improve and that I am over the worst of it. I should say that, during all this I have not had any buring at all when I urinate, as others have complained of. Just a very slow flow, and I have passed some debris. I’ll have to say having the option to self cath really decreased my anxiety and might have helped my flow in the long run (I’m kind of a nervous person). One thing that does occur to me now is that I am actually HAPPY the insurance company denied my request for the Urolift procedure. Given I had some rather large stones in my prostate I don’t see how the Urolift procedure would have helped me. While it might have opened up the prostate a bit, I think it would have aggravated the rather large prostate stones that were present and probably INCREASED my pain. By the way, I had an abdominal CT done back in 2011 and at that time only a “tiny” stone was seen by the Radiologist. Don’t know what they consider “tiny”, but those 5mm stones I saw were really large and very nasty looking, with real sharp edges. It’s no wonder I complained of not just urgency and slow flow, but PAIN. Urologist passed the pain off as bladder pain. I am hopeful that by passing those stones that I won’t have that pain any more.
2 likes, 53 replies
toby52
Posted
I am at day 41, almost 6 weeks from my Green Light surgery. I am doing much better flow wise, not quite fire hose but certainly much better than I've had in years. I decided to check on how Green Light has affected me sex wise. I have no problems with erections. Even a couple of days after my surgery with a foley catheter still inserted I was having nightime erections, so I was pretty sure the Green Light had not affected that. As I sorta expected, I do have retrograde ejaculation, but my orgasm is strong and still very pleasurable. I have experienced retrograde ejaculation in the past due to Rapiflo and/or Flomax, but what I am experiencing now is quite a different feeling. Rapiflo's effect was the worst ... not only was there retrograde ejaculation, the orgasm was a dud, literally. Flomax had a similar effect, but not quite the "dud". What I am experiencing now is quite different. My orgasm is very strong, just no semen comes out. I will have to admit the feeling is different, but because the orgasm is as strong as ever I really don't mind. At 64 I won't be fathering any children at this stage of my life, so it's really no big deal to me. My urinary flow and freedom from the daily pain and discomfort are much more important to me.
toby52
Posted
A small correction to my original post ... I incorrectly stated in my last paragraph that at day 28 I finally had positive results. I should have said day 32, which was the day the foley was removed. In any case, since day 32 my flow has gotton better each day, although at times I seem to "plug up" and am unable to urinate. In the 9 days since the foley was removed I have had to self cath 5 of those days, always late at night. When I do the self cath, after I am finished there is always about half an inch of thick blood (but not bright red) inside the end of catheter (the part that goes in my bladder), so I'm thinking I still have some bleeding going on in the prostate and occasionally it forms a blockage that my bladder cannot push through. After I cath my flow resumes to it's normal good flow. The last two days I have not needed to self cath so I'm thinking the healing process is continuing and the bleeding is becoming less and less.
I should also say that after having sex for the first time yesterday I had some pain when urinating that I had not had before. A couple of times when urinating I felt a sharp pain, but only for a moment. Had not felt that before at all, so I'm thinking that having sex stressed the prostate and caused the sharp pains (I should point out it only happened twice out of many urinations that day). So maybe I should take it easy on sex for little longer.
toby52
Posted
Here is a follow up to my Green Light Laser Surgery done on 5/19/17. Unfortunately, as of today I am in a world of hurt and I totally regret my decision to do Greenlight.
Up until around July 26 I was doing very well. I had lots of problems in June and had to have a foley in for a total of 21 days. However, I had it removed on June 20th, and because the pattern was that I could urinate good during the day and totally stop at night I asked my Urologist to authorize self cath. He did, and for 5-7 days after the foley was removed I had a fair flow during the day and had to do one cath at night when the flow stopped. It should be noted that after the single cath at night the flow jumped back to normal "daytime" flow. After around 7 days I noticed I did not need to cath at night and my flow really started to improve. I FINALLY was beginning to see a "fire hose" flow, at least during the day.
To keep things flowing good, I decided to cath once a week, in the night, which is when my flow would slow down. But during the day I did not have to cath at all and flow was GREAT. Also, in the latter part of June I started reducing my daily dosage of cardura from 4mg to 3mg to 2mg to 1mg and finally stopped it on July 3rd. So no alpha blocker at all, and yet my flow was great, at least during the daytime.
This all changed around July 26th. I should say that I had been very constipated for quite some time since having to take a 7 day course of Cipro (2X a day). Cipro has always done this do me, and it takes my body a long time to re-adjust. So I had been straining alot during this period of time (July).
Even taking stool softeners doesn't help. I don't know if the straining I was doing has anything to do with what has happened now, but I felt I should mention it.
Anyway, I noticed my old "prostate" problems returning around that time. Flow was slowing and becoming more difficult, and I was getting some strange sensation on the tip of my penis. I have had these type of symptoms before, and in the past it generally ment I needed to make sure I was taking the full dosage of my Cardura (4mg). Because of it's side effects I often try to cut back to 3mg or 2mg daily. I continued to note the decrease in flow and other symptoms as the days went by. I restarted my cardura. I did another evening self cath on the 28th and go 300cc out, which is a lot for me. So the flow was getting worse day by day, and somewhere around the first of August I noticed something when I did a cath. The cath was not going into my bladder. I didn't realize it at first, because when I pushed past the first spincter (prostate) urine began to flow, although very slowly. I didn't realize I wasn't entering the bladder at first. but it became obvious the next few times I try to cath.
So here I am around August 3rd and I am barely urinating at all. When I try to do a natural void it just dribbles out. When I do a cath I can get more, but it comes out very slowly and is actually draining the urine that has acculated in the prostate and not in the bladder. At this point what it feels like to me is that something is blocking my bladder neck and it is open just a crack, just enough to let some urine through. That is the only thing that is saving me from complete retention right now.
So my Urologist is on vacation and there is no one on call or covering his patients. Their staff can do nothing for me. So I go the the emergency room, wanting to get a foley put in to buy me some time. To make a long story short, 2 nurses and 1 MD tried over a period of 6 hours to get a catherter in me and was unable to do it (and one of the nurses - a male one - REALLY tried, pushing at times, REALLY hard). At one point I had over 400cc in my bladder according to a bladder ultrasound, and they had to give me morphine for the pain. I thought I was going to die. So this hospital doesn't have a Urologist available, so they begin looking for a hospital that can take me. I am in the Visalia, CA area, and they narrowed it down to 3 hospitals (Bakersfield, Modesto and Fresno). After 2 hours none of these hospitals could produce a Urologist. Thank God that while lying there in the hospital bed I decided to try and push out some urine myself and over a period of hours I was able to push out all the urine (on me and the bed). This was a good and bad thing. The good was I was no longer in acute pain. The bad was the nurses noticed I had been able to dribble out some urine so they said I was not in retention and discharged me. I was flabbergasted.
So over the weekend I tried to manage my fluid intake so it would match the rate that I was able to urinate. Using a catheter helps a little, because there is very little pressure behind the urine because the bladder neck is so constricted. Needless to say, this is not fun at all.
So on Monday I call my Urologist's office and explain what happened and can they please find me another Urologist that can help me. They didn't really seem to want to help me, but they agreed to call the other Urologist that works i the same Meidical clinic my Urologist works. His attitude wasn't much better. He directed me to come in and to do a Uroflow test. I did, and it was a long, slow dribble. Apparently he decided this did not constitute an emergency, so he said he will see me Thursday. I just couldn't believe it.
Going to another emergency room wouldn't help because at this point I don't think anyone could get a catheter in my bladder without the help of a Cystoscope, and I'm not even sure it can be done with it.
I don't understand what has happened. The prostate seems wide and clear. I can't understand why no one can push a foley into the bladder, especially since there is obviously SOME urine coming through.
We have tried several sizes of catheters, and they tried a coude at the emergency room. I got some smaller catheters today (FR10 and FR12) to try and a couple special coude catheters (Rusch Tiemann) and I couldn't get anywhere with those, either.
The MD at the emergency room mentioned something about a "false passage" when he was trying to insert the foley into the bladder. I gather it is possible to open up a sort of "tunnel" that goes no where, especially with the prostate tissue that has be subjected to laser vaporization. Don't know if that is what is happening to me, but I assume if it is it would have to been seen using a Cystoscope.
I just hope to God I can last until Thursday. And then there is my fear that when I see the Urologist on Thursday he just looks at me and says, ok we will do a Cystoscope next week. You can urinate, you are not an emergency.
I plan to lie to him and tell him when I get to his office that I cannot urinate at all. I feel it's the only option left for me.
I'm sure that much of the problem I was having getting to a hospital that had a Urologist is that I am limited to Physicians and Hospitals that participate in Obmacare, since I have Blue Cross through Covered California. I have 4 months to go before I can get on Medicare. I know it's not a heck of a lot better, but it is more widely accepted. I am counting the days.
hank1953 toby52
Posted
Toby, sorry for what you are going thru. From what I've read, unless you've just developed a stricture, I can see either or both of the two most likely causes, independent from your GL:
1. Constipation. How bad is it ? Solve the constipation, you'll pee better.
2. False passage. It may be caused by Foley insertion (most likely) or even by self cathing. It important not to force the catheter in if you find resistance, otherwise you may damage the urethra, or even create another FP.
Trick #1: Try to locate where to FP is, by experimenting and by feeling. If you use STRAIGHT catheter, you can try to twist it a little, left or right, when you think you almost at the FP. DO NOT do this if you use a COUDE.
Trick #2: Another trick I use with STRAIGHT catheter is to let it advance to the resistance point, where it can not go further with light pressure. Then I pulled it back, either all the way out or almost out, rotate it around 180 degrees (pay attention to the marker at the funnel). Then I push it back in slowly. The rational for this is the catheter is slightly bent one way after entering the FP (the 1st time). If I rotate it 180, it will come in pointing away from the FP, and have a better chance of getting to its normal route which is the urethra. DO NOT do this if you use a COUDE.
Also, I found out that when I use the coude, I encounter the FP more often. I think because the tip is too pointy and bent to the side (the side is where FP usu is), at least with the Coloplast Speedicath coude. I also think coude might have cause my FP. So I don't use coude anymore. But some people can only use coude.
Trick #3: Use straight catheter, but go up or down 1 size. If you go up in size, give it more time to stretch open the urethra at the obstruction point. Going down in size will make it easier to go thru obstruction but also make it easier to enter FP.
Uro may be able to confirm your FP.
Hope this helps.
toby52 hank1953
Posted
Hi hank1953,
Appreciate your comments. The problem with my bowels has more to do with very hard stools rather than the frequency of having a movement. Seems like every time I take Cipro this happens to me. In any case, when I do go, I had to strain quite a bit, and that produced some bleeding. However, I haven't done that for over a week (since before going to the emergency room on August 4). If the straining did cause damage or twisting in that area, it had to occur before that.
I don't believe the occurance of a false passage would cause the bladder neck to become tight, although it would certainly explain why I can't self cath and why the ER personel couldn't get a foley in me. I tend to think there is something stuck in my bladder neck, like a stone. Remember, after the surgery I passed around 5 stones that I figured were prostate stones. My Urolgist didn't seem to think that was significant, although it was back in early June that I saw him. Maybe these are really bladder stones and have been sitting in there for a while, although I just assumed during the Cystoscopy done prior to my operation the Urologist would have seen them if they were in the bladder.
Regarding your tips on the self cath (and believe me, if I could self cath again all would be right with the world again) and I had tried much of what you described. Prior to all this I had been doing my CIC with a straight catherter, FR16. This is the size the urologist gave me as samples. I didn't have any problems, aside from the fact it's not a real pleasent experience. Never had any trouble passing the spincter or entering the bladder.
I have been using FR14 Hydrophilic Straight Catheters since the 3rd of this month, since they seem to go in easier. But the furthest I can go is into the prostate and then I hit a brick wall. Luckily the bladder neck seems to be leaking a bit, so urine accumlates here and I can drain it with the catheter.
I have done the twist trick, I pull back rotate a bit, then push in again, then rotate again, hoping if it is a false passage I could hit the right path. However, I don't know for sure if it is a false passage so I don't want to push real hard when I get in, which is something I am tempted to do if the problem is something stuck in the bladder spincter.
I bought some special coude catheters (Rusch Tiemann Coude Tip, FP14 and FP12). I tried the FP14 one and it didn't seem to make any difference at all. I was told these type of Coude catheters were the best for tough cathing situations, but I found it was downright irritating, especially when traveling down the urethera.
I routinely do Trick #2. I will push the catheter into the prostate and then drain some urine. It's VERY slow draining when there is no bladder push behind it, and there isn't much volume. After about a minute I will do what you described. I will pull back, rotate, the push up again. Nothing seems to change no matter where i position the catheter.
I even went so far as to slightly deform the end of one of my regular FR14 Hydrophilic catheters, so it has a little bend to it (I hung the thing from a partially closed drawer). After sitting that way for an hour or so the end bends slightly to once side. So then I use that catheter and do the in and out and rotation and still nothing.
Today I tried your trick #3 ... I had gotton some samples of straight catheters, FR10 and FR12. I tried the FR10 and it goes in real easy (natch) but hits the same brick wall. Moved it in and out and rotated it but no change. The FR10 is so thin if I did manage to get it to the bladder neck I'm not sure it would go through because it bends so easily.
Tomorrow I am scheduled to see the other Urologist in my clinic. I really hope he can offer some answers and not just pass me off. My goal is to walk out of his office with a foley catheter installed and deal with the rest of it when my Uro get's back from vacation (although he is so booked up the earliest appointment I could get was August 29th).
hank1953 toby52
Posted
Too much hard stool impacted in your colon can pinch on the urethra and make peeing and cathing difficult, at least for me. But if you can go regularly than it is not a problem.
It seems like you know all the tricks of self cathing already. 😀
Just curious, how far did the catheter go in before it stops absolutely ?
It is hard to believe that you used to use 16 straight OK and now you cannot even get a 10 to go through. It must be either FP or an obstruction. It cannot be prostate because prostates don't grow that fast. Maybe stones like you said. I never have stones so I can't comment.
Some thing else you can do is to take some alpha blockers, or up the dosage if you are already taking one, just to see if things can get better.
Wish you the best.
Hank
toby52 hank1953
Posted
When I cath I push in until it hits the external spincter. With a larger catheter (like the FR16) it may take a moment to get through that, while the smaller ones glide right through. Once I get through the external spincter it appears to go another 1 or 1.5 nches or so and then hits the wall. In my research the prostatic urethra is about 3 cm in length, or a little over an inch. If I try to push with some gentle force the catheter appears to buckle somewhat, which I attribute to all that room my prostate now has. Push harder and I can actually feel the catheter bend in my penis. The question is: is the catheter following a false passage that has developed inside the prostate, or is the catheter actually reaching the bladder opening and just can't get through? That's something that can only be definitely answered by a Cystoscope, I would assume.
I keep thinking back to when I had the foley removed for the last time and was able to urinate but it shut down after about 8-10 hours. It's almost like the bladder was sluffing off some mucous or similar and that, over a few hours, would plug the opening. That would explain why I was able to urinate normally after I did a single cath to "unplug" the opening. Or there could be a stone in there that gets near the bladder neck at times and plugs it, only to be pushed out the way with the cath. If the stone hypothesis is correct, it may have gotton too far inside the bladder neck this time to be able to be pushed back into the bladder. I don't know if you saw the pics of the stones I posted, but they are pretty big and have lots of mean looking points on them
A Cystoscopy is what I am hoping for by the Uro tomorrow, although I am not sure he would be prepared to do that. I certainly hope he can, otherwise it will be an absolute wasted visit. Like I said previously, with the difficulty I have been having the last 10 days I REALLY need to have him either identify the blockage and remove it, or (at the very least), insert a foley catheter to buy me some time.
At the moment I am still cathing 3-4 times a day. Even though I can't get into the bladder it seems to help coax the urine out of the bladder through the small opening in the neck that is obviously letting some urine through.
hank1953 toby52
Posted
I remember pictures of your nasty stones. Now, think of it, you probably have a lodged stone. Hope they will do a scan and remove it tomorrow.
Hank
toby52 hank1953
Posted
You know, come to think of it, when I was at the ER last Friday they did both an Ultrasound and a CT scan of the abdomen and pelvis, with contrast. What I was told was they saw something suspicious on the Ultrasound, so they ordered the CT and it proved negative. The only comment I got from the ER doctor was the CT showed nothing significant and my prostate was not swollen. I guess if there was a stone sitting in the bladder neck I assume the CT would have shown it and the doctor would have told me and they would have diagnosed my problem as a stone blocking the bladder neck and taken the next step to have it removed. I will have to see if I can get the copies of the radiologist's report.
So maybe I'm wrong and there is no stone ... could be scar tissue from the Greenlight surgery perhaps. Maybe a flap of tissue that is covering the bladder neck opening (or part of it).
I still find it strange that this all started about the same time I noticed I was not able to get the catheter to the bladder. It just seems all related.
toby52 hank1953
Posted
I will give the "twist" technique a try. Twist CW or CCW as you push through the urethral spincter. Not holding out much hope that it's going to make any difference, although it would be a Godsend if it did.
hank1953 toby52
Posted
Another temporary solution is to up Doxazosin to 8mg to see it would help by opening the bladder neck more. Also try different positions, including leaning over while seating on toilet, leaning over the sink, reclining, lifting one leg, laying down on one side, penis stretching/shaking, etc. Anything to see flow improvements so you can have a clue. 😀 I tried it all.
Maybe a large tissue cutoff ?
Hank
hank1953 toby52
Posted
toby52 hank1953
Posted
Due to the many bad side effects I get from Doxazosin I don't want to up the dose. What I did do tonight was to switch to Flomax (I have a prescription from back in January when I was attempting to switch away from Doxazosin) to see if it would make any difference. I remember in all the years I have been taking Doxazosin I never had any retrograde ejaculation with it. When I took Flomax, I did. I assume that is because Flomax affects the bladder spincter more than Doxazosin does, at least with me. Rapiflo did the same thing, but to a greater degree than Flomax. That's one of the reasons why I never took either of them on a long term basis.
In any case, I took a dose of Flomax about 3 1/2 hours ago, so I'm just now feeling the effects. So far no miracles. Peeing at the same rate I was before (drip, drip drip). I will do a cath before I go to bed and see if it made any difference there. Again, I don't expect any miracles.
Several times of the last 5 days I have tried different positions in the hopes I would hit that one time the cath would go into my bladder, but no dice. I did some reading up on false passages on the internet tonight and I don't like what I read. It takes a cystoscopy to diagnose it, and I'm not sure the Uro I am seeing tomorrow is prepared to do one on me.
If he does, it appears the "cure" for the false passage is to wear a foley for a month or more (up to three months). Not something I would look forward to but its gotta be better than what I am going through now.
I wish my Urologist had warned me about the dangers of developing a false passage when doing CIC. Maybe the FR16 was too large for me. I really didn't do it all that much (until lately, I had probably cathed a total of 12 times), and I was always very careful when I did it. But I often got blood when I cathed, which I assumed was clogging the bladder neck and causing my "stoppages" because the flow always improved after I was done.
After I see the Uro tomorrow I will post the results. Thanks for your help and advise.
hank1953 toby52
Posted
False passage is more likely created by others with catheters or instruments than by yourself, because they can not feel your inside (pain included) and as concerned with your well being, as much as you do.
I believe larger catheter has less chance of creating FP, unless you really shove it in, then all bets are off.
I am not suggesting upping doxazosin permanently, just for 1 or 2 days to see if it helps. But your uro visit today may solve all your problems. Let's hope so.
Hank
hank1953 toby52
Posted
BTW, the last time I had "drip, drip, drip" peeing (almost full retention + urgency + frequency), I must have had UTI, or a prostate infection, the doctor was not really sure. I had a urine test that showed traces of white blood cells so was given antibiotics. The problem went away after couple days.
Hank
toby52 hank1953
Posted
Ok, what a day .... I saw the other urologist in the clinic and I really like him. His personality is so much more open than the one I see. Mine is very matter of fact, doesn't explain a lot (but he is good at what he does). I am considering switching to the other one, but he is 66 years old so I don't know how much longer he is going to be in practice.
Anyway, this guy is just getting back from vacation so he is absolutely swamped today. It took a couple of hours but I finally got to see him, explained the situation, and his first thought was to try a coude catheter, and maybe use some special "tricks" to get it in (Urologist humor). I didn't think that was going to work, and it didn't. So he tried a couple of other catheters and said, "we need to scope you, seeing is believing" (more Urologist humor). So in I go to the Cysto room and get prepped. It's amazing that I used to be deathly afraid of the cystoscope. Now, I watched the damn thing on the monitor. He inserted it and pushed it in few inches and said "Uh Oh" (or something like that) and I mentally said "Oh S**t". He said, look at the monitor. Once past the spincter it was a big mass of scar tissue. He could not find the Urethra at all. It was totally plugged.
(When you have a moment, watch this Youtube video, you will get an idea of what he was up against)
So at that point he wanted me to come back tomorrow and my heart sank. I told him, after seeing what was just revealed by the Cystoscopy, are you really going to send me home? I CAN'T PEE!! He wasn't prepared at that time to do what was necessary to find the Urethra, and he had a s**tload of other patients to see. So I asked about a suprapubic catheter. He said he doesn't normally do those in his office, so he didn't think he had the equipment to do it. They checked, and they didn't have anything. So in desperation I asked him to check with my Urologist's office downstairs and see if they had one. They DID, and he agreed to do the procedure in the office, thank GOD. His assistants were impressed, they don't normally get to see this type of procedure done in the office.
So I now have a suprapubic catheter in me and I can drink to my hearts content again. So now it will be a week or so until I can get into my regular Urologist so he can come up with a plan to fix the problem. I anticipate he will do a special procedure with the cystoscope to locate the urethra, then they pass a thin wire through the passage to the bladder. Once that is in they keep pushing in larger tubing until they can finally place a foley in there. Then you have to wear the foley for a while to try and let the urethra heal. I am not sure if he has to do anything in particular to get rid of the scar tissue.
By the way, while he was in there with the scope we saw an ugly looking brown stone sitting there, embedded in the prostate tissue, so I know I have a least one more stone that needs to come out.
Personally, I think the prostate stones were 50% of my problem. I had recurrent prostate infections over the years and it's my understanding the body's immune system will form a stone around the invading bacteria, to wall it off. Normally they don't get that big, but obviously mine did.
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toby52
Posted
Sorry, I didn't realize that including a link to a youtube video was against the rules (guess I need to actually READ the rules
)
Anyway if anyone is interest in the that video I reference in my previous post, just go to Youtube and search for "Urethral false passage", the first video that comes up is authored by Nikos Bafaloukas and presents a very good video description of what I am now facing. I think it's pretty relevent to the conversation, since this is a complication of the Green Light laser surgery.
hank1953 toby52
Posted
Hi Toby,
I am happy for you that things are getting better. I was worried because you did not report sooner. Glad to hear from you. I'll follow your links and Youtube later, when I have more time.
1. If you have a supra, why would you want a Foley ? From what I hear, supra is a lot better, excepting for the installation, which you already went through.
2. At least now you know what you have: blockage due to scar tissues and stones. The question now is where the scar tissues come from. GL most likely but could they come from botched attempts at cathing ?
Sound like you ran into a good uro. I am sure he'll fix it in no time.
Hank
hank1953 toby52
Posted
toby52 hank1953
Posted
Yeah, when I researched how you heal a false passage (and mine might be more technically called a blocked passage) they go through what I described to eventually put in a fat foley for a period of time. The foley pushes back the extra tissue and the hope is a nice urethra forms again.
I'm probably over simplifying it, but that what I understand needs to be done. I don't know if the doctor would need to remove any of the scar tissue, although I would at least like the stone I saw in there to be removed.
By the way, the suprapubic catheter is not alot of fun either, I'm still very soar from the incision area. But so far it's much better than having it go through the penis. That causes a LOT of irritation to the end of the penis, something I'm definately not looking forward to having to deal with again, especially over an extended period of time.
toby52 hank1953
Posted
Regarding the scar tissue, I am also wondering if did some of the damage myself. It's hard for me to believe, because I was so careful, and took things very slow when I did the cath. I also used an FR16 cath, what my doctor told me to use. I think I only cathed about 10-12 times, and most of those were in the first week after they removed the foley for the third time. Each time I did a cath I got into the bladder just fine, and afterward when I did normal voids the flow was great, like it "cleared the path".
I suppose it is possible that with all the scar tissue in there one of my later caths might have went the wrong way and I didn't notice, and that started me on the path were I am now.
On the other hand, I KNOW some of that damage in there was caused by the attempts to insert a foley in the ER back on Aug 4th. The male nurse I had who was in charge of inserting a catheter REALLY put a LOT of pressure on the cath, trying to force it through. He drew some blood, so I know he did some damage. Without a Cystoscope he (and the ER doctor) had no idea how plugged up my urethra was (is), so they were going on the assumption the clog was in the bladder neck.
The sad thing about it is a lot of this could have been avoided had this not occured when both Urologists in my clinic were on vacation, leaving no one to cover their patients, or the local hospital when they might need a Urologist in an emergency.
hank1953 toby52
Posted
I am pretty sure my FP was caused by one of the two nurses also. I had blood both times. The first time was a Foley. It was very painful the 2nd time when the nurse shoved a coude in ... The wrong way. I of course bed badly. I now wonder if I have scar tissues also and I am doing OK just because I cath daily, to keep it dilated.
Now i get nervous just thinking about some one else inserting anything into my penis. 😀
I kind of like the Supra. I wouldn't mind having it if all else fails. There is a women on this forum who has it for 30 years and she said "no sweat!".
Hank
toby52 hank1953
Posted
Urologist ordered a Cystogram with voiding test. Did it on Friday. Having a suprapubic catheter in place makes the test a little easier, since they do not have to insert a catheter to inject the radiocontrast into the bladder. I was able to look at the fluoroscope during the test, but I really couldn't see anything of interest, and the doctor (of course) wasn't going to say anything. I was only able to dribble out a little bit of urine through my urethra, hopefully it was enough for the Urologist to make a judgement.
So now I will wait until I can see my Urologist. I am trying to get in sooner, but at the moment my appointment is scheduled for August 29.
After doing research on the internet I believe the only way my Urologist is going to fix this is to go back in and do surgery to clear out the scar tissue. Don't know if that means another Greenlight surgery, or a more conventional TURP, or something else. I don't think that just going in with a Cystoscope to insert a catheter is going to cut it. Something has to be done with the scar tissue.
hank1953 toby52
Posted
Good to hear from you, Toby. How is life with a subpra ? compared to a Foley ?
I don't think they are going to do another TURP or GL, would be an overkill. They may try to create a passage and then dilation to keep it open, first. If not possible then a scar tissue removal surgery.
Hope life is better with you now, and later. Hank
toby52 hank1953
Posted
Life with a supra is "different" than living with a regular foley catheter. They both have their pluses and minuses. I was very sore the first week in my lower abdomen, although 10 days out it is much better. I still put a gauze pad over the site each day, mostly for protection against it getting snagged on my clothing, or while I sleep. Getting more bladder spasms now than I did when I was wearing a regular foley, especially when I get an urge to move my bowels. Sort of a reflex, I guess.
One thing I REALLY appreciate with the supra is not having the chafing at the end of my penis. That is a MAJOR PAIN. Also dealing with erections with a foley can be very painful, so I don't miss that at all.
However, both catheters require me to wear a bag, and that is a royal pain. I hate it. Can't wear my regular pants (Levis jeans). Sick of sweat pants
.
I bought a valve that is designed to attach to the end of the catheter. The idea behind it is to keep the valve closed and let your bladder fill up normally. When I get the urge I go to the bathroom and open the valve. No bag. Have read that many people use it this way. Doing it this way requires you have a working bladder with normal sensations, which I still have. However, I haven't tried it yet. Thought I should ask my Urologist about it first.
hank1953 toby52
Posted
toby52 hank1953
Posted
I've had the suprapubic catheter in for almost 3 weeks now. Saw my own Urologist yesterday, he said the results of the Cystogram showed I have a stricture in there, but he thinks it is a penile stricture and I think he is wrong. While I'm pretty sure I do have a bit of a narrowing in the penile part of the urethra, I do not believe it is the cause of my problem. I believe the "clog" of scar tissue (or whatever it is) is further up. After all, before I got the suprapubic catheter I was routinely using a 14FR catheter to help me urinate, although I couldn't get into the bladder. However, I am POSITIVE I was able to get past the external sphincter, since that's a pretty easy thing to feel when you are doing a self catheter. If I can get a 14FR catheter past then external sphincter, then the problem is not in the penile urethra. When I told that to my doctor his attitude seemed to be that since I'm not a doctor I wouldn't know a sphincter from a stricture. Not real happy with my doctor at this point.
Anyway, he has scheduled me for surgery this Friday (9/1) and, depending on what he finds, will try and identify the problem and fix it. He has requested two authorization from my insurance, one being CPT 52276 ("Cystourethroscopy with direct vision internal urethrotomy"
and 52281 ("Cystourethroscopy, with calibration and/or dilation of urethral stricture or stenosis, with or without meatotomy, with or without injection procedure for cystography, male or female"
. The way he explained it to me is that he won't really know until he has the scope in me what he will find, so he wants to have both procedures authorized. He may find a stricture, which he would attempt to dilate, or he may find scar tissue and attempt to excise. Either way the object is to identify what's blocking the path, fix it, and then insert a foley for a week or so. I think he will find scar tissue, maybe even a couple of prostate stones (I saw one in there on the Cystoscopy that the previous doctor had done, prior to inserting the superpubic catheter).
He gave me the usual disclaimers for these procedures, that even if he finds and corrects the stricture/blockage, there is a very good statistical chance it will re-occur. Then he said that if this type of procedure didn't work I would need to see a Urologist that specializes in identifying the stricture location and size, using open surgery to cut it out and sew everything back together (I don't know the correct term for that). Trouble is, no one in the San Joaquin Valley (Fresno, CA area) does this, so I would have to go to LA or SF. Not something I would look forward to doing (not the mention the potential cost and downtime).
Obviously at this point I wish I had never heard of Greenlight Surgery.
hank1953 toby52
Posted
You can always confirm this yourself if you have a set of dialation rods.
Hope for the best to you on 9/1.
Hank
hank1953 toby52
Posted
dialation -> dilation
toby52 hank1953
Posted
Well, regardless WHERE it is, if it is a stricture from what I have read treating it can sometimes become a lifelong journey because it can (and usually does) re-occur, which will require multiple treatments.
But like I said, I just don't see the main cause of the problem being in the part of the urethra that is external to the urethral sphincter (i.e. the penile urethra). Like I said before, when I insert a catheter I can feel it travel all the way to sphincter, stop for a moment until it relaxes, then it will continue on for a few centimeters more, until it basically hits a wall (false passage, probably). The other Urologist who did a Cystoscopy basically did as much, and I watched it on the monitor. Once he got into the prostate there was no visible urethra, just a lot of tissue (and a prostate stone). That's why I think the problem is in the prosthetic urethra. I still wouldn't be surprised if, when he actually gains access to that area and the bladder neck, that he finds something stuck in there, because that's what it originally felt like, before I got to the point where the catheter could no longer find a path to the bladder. But I'm no Urologist, and I assume my doctor is competent enough to discover the root problem.
hank1953 toby52
Posted
It's possible that you have both a penile stricture and a false passage. Hank
hank1953 toby52
Posted
toby52 hank1953
Posted
Hi Hank & All ... sorry about not posting here for a while. Been kind of down in the dumps since the last surgery, haven't felt like posting.
Anyway, I had the second surgery on Sept 1st, and it was a failure as far as my Urologist (and I ) were concerned. During the cystoscopy he saw what the other Urologist had seen a month before ... a mass of scar tissue blocking the entrance to my bladder. He said he tried to pass a thin wire through several of the "holes" in the scar tissue, but when he x-rayed the bladder he didn't feel the wire was in the right place, so he stopped. So basically the procedure was a complete bust.
I have attached a picture the other urologist took during the cystoscopy back in August when he put in my suprapubic catheter. It's a little fuzzy, but if you look at it you can see the prostatic urethra, looking towards the bladder neck. You can clearly see a mass of what looks like scar tissue, with a few "holes" scattered around.
What kind of p****d me off is that, during the PRE OP, I asked MY Urologist if he had seen this picture the other Urologist took and he said he had only read his notes. The other Urologist had put in his notes that he encountered a bulbous stricture, and I believe he was mistaken. That would mean he felt the restriction was PRIOR TO the prostate, and the picture clearly shows it is WITHIN the prostate. Not looking at the picture which clearly showed the stricture I thought was real dumb. It REALLY annoyed my wife.
In any case, AFTER my current Urologist failed in the procedure, he basically said what needs to be done is "above his pay grade", and that I need to see a specialist in either SF or LA. He recommended a Dr. Stuart Boyd at USC (Keck School of Medicine).
This means, of course, I am looking at urethroplasty. Never in my wildest dreams (actually, nightmares) did I think that going through Green Light PVP would cause so much damage as to require urethroplasty to correct it. This type of complication was NEVER discussed prior to the surgery.
I am also upset that my current Urologist did not do a cystoscopy SOONER, when I had all the trouble urinating and had to resort to intermittent self catherization. I think if he would have done a cystoscopy in July he would have seen the scar tissue and gone in and cleared it out and kept an eye on it, so it wouldn't come back and clog things up. He didn't do this because he felt my difficulties were due to me being "overly sensitive" to the surgery and told me to give it time.
In any case, what it looks like I have is a stricture of scar tissue inside the prostate, just before the bladder neck. Before attempting to see Dr. Boyd, I will be seeing a Urologist in Bakersfield (USC has a facility there, it's only 90 minutes away) on October 10. I hold out hope they might still be able to pass a catheter through using tools my Urologist (and others in this area) do not have. They might be able to pass a camera into my bladder utilizing the suprapubic catheter at the same time they have the cystoscope in and be able to find a way into the bladder from the prostate. If he can do that, then he can eventually dilate the opening enough to pass a catheter in, and once that is done he can use a knife or laser to clean out the excess tissue.
Of course, I'm doing wishful thinking here. When I get to talk to the doctor at USC's facility in Bakersfield (Dr. Jeffry L. Huffman, look him up) he may say urethroplasty may be my only hope and refer me to Dr. Boyd. I am not crazy about doing that, since that will necessitate several trips to LA (4 hours away), and neither my wife nor I are in the best shape physically to handle that.
So at the moment I still have my suprapubic catheter in, and still have discomfort in the prostate area but it's not real bad, at least for now. I really hope Dr. Huffman can help me, I will know more after October 10.
hank1953 toby52
Posted
Thanks for the update, Toby. Sorry about the bad news. Hope something good will come. The more I get around this forum, the more I hear about people getting strictures from GL and TURP. Just as you suspected. Maybe someone will post some acceptable solutions. If I run across, I will let you know.
Nevertheless, it's good to hear from you. Take care. Hank