Personal PAE at UNC Experience

That should be Apifiny.

I don't understand why they have to do a turp on you prosate when the stones are not in the prostate.  They are in the kidney and the bladder.  I would tell himNO NO NO.   They has to be a way to get the stones out without toching your prostate.  He is going to distroy your prostate not once but twice.  There is something wrong with this picture.  I think he is going to cause more problems  I would ask why and if it was me I would tell him move it on the side and remove the stones.  And do not cut my prostate   That is my opnion  Take care Ken.   . 

 

Thank you, Ken.  The stones can be removed without cutting my prostate, which is an option.  However, I still have a large post void residual (PVR) which is due to blockage.  It has been explained to me that the stones have collected in my bladder due to long-term blockage and a volcano like effect at the bladder outlet, due to my large prostate pushing into my bladder.  If I have a stone only removal procedure, then I will be left in a state of AUR induced catheterization until prostate reduction, due to irritation of my urethra/prostate during the stone surgery (I am on the verge of AUR now).

 

My prostate is too large for urolift.

 

Another urologist is recommending open prostatectomy/stone removal, which would be one surgery.

 

Another possible option is laparoscopic removal of the stones, with possible suprapubic catheter, and prostate reduction surgery later, which could possibly be PAE.

 

Two TURPs is like to horrible to face.  And an open prostatectomy is no picnic, either.

 

I asked the surgeon the likelihood of two TURPs being needed, as opposed to one.  He said that he could not tell and recommended that I should show up on 9/2 if I want the surgery.

 

Going out of my mind with stress, fear.

 

Mark

Mark, has anyone mentioned Lithotripsy to break up the stones so they can be passed from your bladder?  In particular, Extracorporeal shock wave lithotripsy (ESWL)?

Hi Mark - thanks for writing. I am very sorry to hear about your issues. Have you considered doing self-cath (CIC) to keep your bladder empty while you explore more options? I was doing it before my PAE about once a week. The guys on another thread taught me how to do it properly but it isn't much fun. Still it gives you temporary control over your bladder while you carefully assess usrgical options. You don't want to do anything that will damage your inner sphincter muscle is possible.

As for me, my post-PAE meds ended yesterday and I went right into retention over night. I just couldn't bring myself to self-cath after everything I've been through so I took a 25mg prednisone pill and after a few hours I was peeing great. But as you say prednisone is a dangerous drug over the long term. If I retain again I will have to do a self-cath. Nealpros writes below about the false sense of reduced prostate size under these drugs. But my prostate is so big I may have to just keep self-cathing until the PAE kicks in. Still I have not had any discomfort at all from the PAE and wonder if any tissue is dying as I should feel something. I'll just have to rely on the guys here to guide me and keep me from getting discouraged.

In your case have you looked at a robotic simple prostatectomy usoing da Vinci? If my PAE doesn't work then that is my next stop. I would never let a surgeon do a turp or OP or Holep  or GLL on me as the outcomes can be terrible with irreverisble complications. Please let us know what you plan to do. I do believe that Dr. Isaacson is the best. While he is an IR guy he works closely with the urology people at UNC and they are up on all the latest techniques. Maybe he could give you a referral to review your case? All the best. Neil

After I read your post I sent a e-mail to my urologist about your problem.  He told me that your urologist is doing the right procedure for your problem.  If they go in and only get the stones you may have alot of bleeding.   My doctor said that you may only need the one turp if he can clean you out.  I just find it a shame that in order to fix a problem you have to cause other problem. ( dry orgasm and other side effect ) .  I guess we have to do what we have to do.  My urologist also said that it will depand how good a surgeon he is and how he treat the bladder neck.  You may be one of the lucky one not to have retro.  I trust my doctor and he has allway told me the right stuff.  I think you will be fine and when they open you up you should be going to the bathroom great  Take care and god bless.  I will say a prayer for you  Ken   

What if you had the PAE done first to make the prostate smaller.  Would they be able to get the bladder stone out without doing the turp  Did you ask your doctor>>>Ken

Thanks Ken, I really appreciate that.  It is reassuring to know that I might be on the right track.  Like you, I really would rather avoid dry orgasm and other side effects, including risk of ED.  I am concerned that the risk and recovery time will both be adversely affected because my prostate is large for a TURP procedure, 100g.  And, of course, 2 procedures would be much worse than one.  I was told at first that one procedure was doable, but later, after I requested an appt, I was told that there is "a chance" that 2 TURPs might be needed.  This is very troubling.

Its sounds like you have a great urologist.

The urologist here have all but promised that I will have dry orgasms; they feel that this is not important, but it is important to me.  They will not even consider trying to improve that outlook.

Thank you very much for your prayers and other help.  Mark

Regarding doing the PAE first, I have about 25 bladder stones, ranging from 3-9mm diameter.  I was told by Dr Isaacson of a patient that did that, and about 2 weeks later went into acute retention with bladder stones stuck in his urethra.  That does not sound good, and is not recommended based on my research.  The stones should be removed first.

A possible PAE option was proposed by another urologist that I am meeting with on Friday.  His proposal is to remove the stones laparoscopically through a small incision in the lower abdomen and bladder.  PAE could be tried after that.  That way, both my prostate and my urethra would not be touched.  He also proposed installation of a suprapubic catheter.  I will be asking more questions on Friday.

Another problem, I have a kidney stone stuck in my left ureter/bladder junction, partially blocking my kidney, with probably a second stone in transit to join the first.  This needs to be remedied quickly, before my kidney becomes completely blocked (a time bomb).  Thank you again for your prayers and other help.  Mark

 

Hi Glenn.  That is an interesting option, actually.  I did ask about that a long time ago and was told that it is not done for stones in or near the bladder.  I might ask about that again.  My previous research indicated that ESWL is routinely used for bladder stones in India; I am not sure about the rest of the world.  Thanks for yor suggestion.  I hope that you find a good solution for your IC problem soon.  Mark

Hi Neil - Sorry that you have not seen any improvement yet from the PAE, but it is still much too early to get discouraged.  I was told that it typically takes 2-3 weeks to start to see improvement, you are not even close to that yet, and many men take even longer to see improvement.  Time will tell, but, as you said, you probably need only about a 10% volume reduction with your very large prostate.

 

I do have a self-catheter here, standing-by for emergency use.  But I am concerned that if I try it once, the resultant trauma will result in AUR, meaning I will need to self-cath indefinitely from that time forward.  Also, I am quite squeamish and might not be able to do it at all.  We both have large prostates.  I assume that you use a coude; what size/brand have you found to work best for you?

 

Where did you here that robotic simple prostatectomy is a good option, better than TURP or HoLEP?  In what way is it better?  I have not learned much about this technique but I am surprised to hear that it produces better results than TURP, GL or HoLEP.  Please elaborate.

 

Hope and pray that you start seeing some benefit from the PAE soon.  Thanks for the suggestions.  Please keep us posted.  Mark

 

Mark it looks like you have looked into everything.  When I was 47  I had 2 kidney stones the size of jaw brakers.  Had to have them blased.  So I know that feeling.  Also I had the bladder retention.  This year All I was peeing was blood  And the bladder retention was the pits.  The doctor told me that the pain is like a women going into labor.  I feel that you should try the less side effect option.  Laparscopically I feel that it would be very good and you would heal fast and they after have the PAE to get the prostate smaller.  I had that sugery for my gall stones.  5 days I was good.   With this one you will not have to deal with retro which is the pits.  Healing would be much better.  Heal time with a turrp could take up to a year and they he want to do 2 I would not put my body through that  I would go for the lesser of the 2. This urologist that your seeing on friday has the right idea.  Doctor today don't feel that retro madders buit to a man it does.  They feel that at our age were not having kids so why do we need to ejaculate.  But we need that feely of being complete. I know when we get older we don't have sex has offen as when we were younger but we still want it to feel ggod.  If there is a way not to take that away I would take the chance.  I would do the second one first. I was on many pills when I first went to my urologist.  The first time I had a dry orgasm.  I did not know what happen.  It got to that point and then went flat no feeling at all.  I said when the hell wall that.  I stop them pills fast.  I don't feel that a man should have to give up anything to just pee better.  Now this is alot to go through but try the lesser of the 2 first and if it don't work then you can alway do the other and then you know you have tryed to do every you can to save your sex life.  Take care  If you like to chat just e-mail me  Take care  Ken  

Hi Mark,  Thanks for your posts. I am glad to read that you and Glenn and Kenneth are helping each other on this thread. I wish all of you the best success with your treatments.

I use a Coloplast Speedicath coude tip catheter size 12fr. This is by far the best one that was recommended by the experienced guys on another thread on self cathing. It is pre-lubricated. I am not used to the idea yet and find it gross but it is far better than the alternatives. The trick is to just very slowly insert it with the guide ridge facing up to you ( this insures you that the curve of the coude tip is also facing up). Then very slowly insert it until you feel a slight sting and resistance. This is when the tip hits the inner sphincter muscle. The next part is key. Do not push the tip through into the bladder. Just keep pressure on the catheter until the sphncter muscle relaxes and opens the door to the bladder. Then push the catheter in about an inch and let the pee drain out. Then remove the catheter slowly. I use a little polysporin on the penis tip afterwards to remove irritation. Also before inserting the catheter put a little lubricant on the penis tip like ky jelly. I want to learn this skill so I can do it if needs be the rest of my life to keep me out of emergemcy rooms and the scalpel of uros. Good luck to you. I will get the link to the jimjames on the self cath thread - his story is really motivating.

On the robotic SP: procedures like turp, gll, rezum are for fairly small prostates - less than 80cc because they work on very small regions of the prostates. Holep is ok for prostates up to 150cc, but it takes out your inner sphincter muscle so you can easily become incontinent if your outer sphincter is not well developed. For prostates larger than that the usual solution was an open simple prostatectomy that left the outer shell of the prostate intact but gutted its insides. Recently a robotic SP has come into use. The advantages of this over the open manual SP is that much finer control of all the nerve bundles can be achieved with fewer side effects. Also this procedure is uses 5 small incisions in the abdomen so there is little scaring and faster recovery. So the urethra and sphincter muscles are not touched. Turp, gll, holep rezum are all transurethral procedures so they can really mess up your urethra and require catheters afterwards and bad side effects. This is why PAE is such a miracle if it works. It works on all sie prostates and never goes near the urethra and is an out-patient procedure - sp what more can we ask for! I sure hope it works.

I should also mention that when there are complications like bladder neck obstructions like a median lobe or stones or diverticula as you have been discussing then PAE may not be as effective. But I was blessed not have these problems with my 300gm BPH so I haven't studied options for this complication. I know that the robotic SP will remove the median lobe and nearby stones as part of the rpocedure without comprimising the inner sphincter muscle but I don't know much beyond that. My first uro told me that I had a large median lobe and my bladder floor was lifted up. But I go a cystoscopy from another uro and he said I was perfectly clear and had none of that. So it helps to get a second opinion because based on my first uro I had written of the PAE initially. Good luck to you all. Neil

Thanks Neil, appreciate the info.  I ordered one of the catheters that you recommended.

I am on Flomax, which seems to help me somewhat, and I do not notice any significant side effects.  Its probably making the difference from full retention in my case right now.

I am surprised what you said about the robotic SP.  I would have assumed that it would have roughly the same effects as an open SP, just more precision.  Doesn't the urethra at least need to be cut where it enters the bladder?  I would be very surprised if post-op catheterization is not required, with a significant recovery period?  Does it risk RGE, ED?  Is this from UNC?

I have heard that there is no size limit for HoLEP, with many performed up to several hundred grams.  There are a lot of reports of post-operative leakage, mainly the first 3 months or less.  I wonder how this compares with TURP, robotic SP?

The vast majority of the HoLEP patients on this site do seem happy in the end.  I am not sure if it is better than TURP for 100g prostates.  It is expensive, long wait, and/or requires long travel.  And I understand that you need to find a very experienced surgeon.

Hope that you start seeing some PAE benefit soon and will not need any further treatments.  Please let us know how you are doing.  Best wishes.  Mark

Hi Mark - thanks for your kind wishes. I am still not seeing any benefit or downside yet to the PAE. It really is like I never had it done. I still get up 5 times a night and will soon have to do self-cath at least before bedtime so I can sleep.

The problem with Holep on prostates larger than about 150gm is that they cannot remove the debris that is pushed into the bladder through the urethra. There is too much of it so they have to make incisions through the abdomen and remove the debris surgically. Also they destroy the inner sphincter muscle which gurantees some degree of incontinence until the outer sphincter is strengthened by exercise. Also there is a long catheter time post op. It just seemed like turp on steroids when I really researched it.

The robotic sp is able to avoid these problems. There is no injury to the inner sphincter or the urethra and only one day on catheter. The doctor also makes small incisions in the abdomen and then cuts the top of the prostate (shell) and reams it out down to near the urethra but he doesn't affect the urethra. Then he sows up the top capsule shell. This type of precision cannot be achieved by manual open simple prostatectomies. I can get you more info on this if you wish. Non of these options are great which is why I pray that PAE works. All the best. Neil

Hi Neil - Yes, I am interested in learning more about the robotic SP that you described.  If you could be kind enough to direct me to more information, perhaps including who is doing it, then that would be great.  Thanks and good luck with your PAE.  Keep us posted how you are doing.  Mark

Hello Mark  Just checking on you.  How did the meeting with the urologist come out.  Sorry that I did not right yester just got out of the hospital.  I hope he gave you some good news...Ken

Hi Mark - thanks for your good wishes. So far no adverse effects or benefits from my PAE - I would say my IPSS score is still about 30. My pee is clear but I did notice that my semen was brown as they say it should be so maybe something is happening - I sure hope so. I will send you some links to the robotic SP in a private message since they don't allow links here. Neil

Hi Ken - Hope nothing serious regarding the hospital.  Hope that you are OK now.

The urologist meeting did not go as I planned.  I was referred to this urologist by the local IR, supposedly to provide a plan leading to PAE, but instead he strongly advised against PAE, TURP being the tested Gold Standard.  I was expecting him to say that the bladder and ureter stones could be removed laparoscopically.  Instead he said that the kidney and ureter stones could be removed via percutaneous surgery, in which access is through the kidneys (I have multiple stones lurking in both kidneys up to 8mm).  But the bladder stones could not be removed this way.

The plan for PAE would be to remove the bladder and kidney stones via transurethral surgery, without TURP, then proceed to PAE.  Of course, the trauma of the surgery would necessitate a catheter, either Foley or suprapubic, until PAE takes substantial effect.  The trauma would probably make seIf-cathing difficult.  If PAE is not successful, then back to surgery for TURP.

Sigh...

A pelvic MRI result came back Friday showing that my bladder is in bad shape, distended, disfigured, with multiple diverticula forming, up to 8mm.  My PVR last week was up to 590ml.

If my only issue was weak stream, then I believe that I would try PAE.  In my case, the complications of the stones is making PAE a difficult option.  I am still uncertain how to proceed, but I am feeling very discouraged.  It is probably too late for me.  Maybe I should submit to the urging of the urologists and hope for a single surgery solution, even with the known side effects and risks associated with TURP (scheduled for 9/2).

If I proceed with TURP, it will be Gyrus bipolar TURP, which I believe is faster recovery than standard monopolar TURP.  My research indicates 2 days post-surgery catheter time is standard, however, my surgeon said 6 days catheter time, due in part to my complicated case.  Mark

Thank you Neil.  I will look at the robotic SP information that you sent.  Hope you see some improvements in urination soon.  Please keep us posted.  Mark

Hello Mark - I am very sorry to hear about your situation. Is there any chance you could get to speak with a urologist who performs robotic procedures as he might be able to adderss all these issues in a less invasive way? What city do you live in? I could try to find someone for you nearby if possible. I wish you all the best. Neil

Glen  Sorry for the problem but I feel there is a way to have it without them distroying your prostate.  That doctor is going to try to get you to do a turp anyway he can because that is where his money is.  Where you say transurethral surgery without turp.  I looked it up  It is the same as a turp don't let them kid you.  I also looked up percutoneous surgery.  It said that is less invasive then a full open sergery.  They would go through your back. .  While I was looking I came a cross  this Cystolitholapaxy. It for removal of bladder stone.  They leave the prostate along.  I am so sick and tired of this doctor saying that the turp is the gold standard.  It old and most doctors that is all they know.  Now this is my opnion.I am not telling you what to do you have to pick but any way to save my prostate is the way to go.  I will never have anything done that will give me retro ejaculation not being able to have a erection incontinence leaking and dribbling and some others.  They give it a 40% chance of this.  To me that is not good odds.  Let say you have the turp.  You still may not be able to pee. Also with anything you have your going to have a catheter.  There was a men on this site.  The doctor talked him into a turp.  He had the first one  It did not work.  The doctor told him they had to do another he had the second one.  He still had problems.  He had number 3  It has been over a year and he has to were a diaper because he has no control.  He was 52 at the time.  Now after 3 sugery there must not be anything left of his prostate.  Think before you go for anything. Please if you don't what to have any of these problem  Think about it first.  Your the one that is having the surgery not the doctor you have to deal with the outcome.  Take care Please.  I know I'm going to get some flak about this.  PS.  I'm doing ok had a low blood pressure problem.  Heart rate went down to 47  Ok for now  Ken     

Hi Neil - I live near San Jose, CA.

The surgeon for my TURP does both robotic and TURP surgery.  He did mention a robotic SP when I first talked to him, but then quickly discounted the idea, saying that it would be difficult to robotically remove the bladder stones.  I could ask him about it again.

I have not researched it well, but it seems like any SP is going to be a very long surgery, with lots of bleeding and long recovery.  But maybe you know of a particular technique that is not that way.  If you could provide more information of the advantages relative to other procedures (ED, RGE, catheter time, hospitalization time, etc) that would be helpful, since you have researched it well.

Please keep us updated on your progress.  Hope your PAE comes out great and that you will not need SP, HoLEP or anything else.  Mark

Hi Mark - the robotic SP is designed for little bleeding and fast recovery. The surgeries are typically 4 hours with just an overnight stay in the hospital and with catheter removal the next day. The old open prostatectomies had all the problems you mentioned. Also the robotic SP avoids damage to the urethra and the inner sphincter muscles so you do not get ED or retro or incontinence. I was set to get it done in Detroit by a da Vinci uro when I heard about PAE and thought to try PAE first. There are only 5 small incisions in your abdomen where all the work is done. It is like arthroscopic knee surgery. If your uro keeps pushing turp I would resist and maybe get a second opinion. I myself do not have baldder/kidney stones and do not know if the robotic SP can address at least the bladder stones and the diverticula. The latter may resolve themselves once you can void fully as the bladder is very resilient and will recover given the chance. For a good discussion of the robotic SP check out the Temple University da Vinci page for robotic SP for BPH. I knwo there are good robotic uros in the LA area. I think it is worth a second opinion if they can address all your issues in one surgery. Robotic SP minimizes bleeding and recovery time compared to the other procedures. Good luck to you. Neil

Mark ...Neil is right.  The Robotic SP procedure is much better and will not go through the penis.   Less problems.  Don't let them talk you into doing what they want to do.  They should be doing what you want.  You are the patient.  They should be able to get both the kidney and bladder stones.  Also just read a couple of post on turp.  7 out of 10 men that have had it wish they never did and they was a guy that after a year he is still seeing blood in his urine.  Take care buddy  Ken    

Hi Ken - Appreciate your concern.  What is the source of the 7 out of 10?  Where can I find posts about TURP?  Mostly I see forums about HoLEP, PAE, REZUM, but not much about TURP.  Thanks.  Mark

Hi Neil - How are you doing?

I was told that diverticula are permanent, although my PVR will probably improve post-surgery.  I am praying that it will improve a lot post-surgery.

I did read the Temple University da Vinci page for robotic SP for BPH.  I plan to ask my surgeon about robotic SP when he returns the middle of next week.

Did the surgeon tell you specifically that you do not get ED or retro or incontinence with robotic SP?  Is there a name for the particular type of robotic SP?  Does suitability for the procedure depend on no median lobe?  I was told that I have a mild median lobe.

Thanks for the info.  Mark

In  considering any robotic surgery, make sure the surgeon has substantial experience and excellent track record.  Do a search for ( robotic surgery complications johns hopkins.   A surgeon who is fully competent, trained with the robotic equipment and has used robotic equipment doing the surgery you are considering a good number of time.  You do not want to be the first patient in this "practice" of medicine.

What the robotic equipment does is to move the surgeon from the operating table to a console and screen, where he or she controls the robotic equipment.   An advantage is that it places the surgeon in a more comfortable position.  It also alows more precise control of movement of cutting instruments, be they scapels or lasers, etc.  A downside is that the doctor is getting no tactile feedback.

 

Hi Mark,

I was originally scheduled for a robotic SP the end of July in Detroit. The uro told me that the ability to manipulate fine nerve bundles allowed him to preserve full sexual function ( except for dry ejaculation because the prostate glandular tissue is removed). But it doesn't affect ED and incontinence is not an issue because he doesn't touch the inner sphincter muscles. Also he can remove a median lobe if it is present with this procedure. He told me that this type of fine detail is not possible with open prostatectomies. Usually robotic SP is used for removing cancer tumors in the prostate but it is also used for BPH.

Having said that it is quite new as an application to BPH though it is covered by Medicare. My very first thread on this forum was trying to find guys who have had the da Vinci SP for BPH but no one responded though it is routine for PCa. I was only able to speak with one man who had it done and he was very pleased as he was on a Foley for 6 months prior to the procedure and soon regianed full bladder control a few months after the procedure. If your uro is down on it I would try to speak with another uro in California who does it for BPH and ask him if you could speak with one of his patients who had it done.

I'm coming up on 2 weeks since my PAE and still no adverse or positive effects. It is like I never had it. I still get up 5 timetold s a night and will have to start self-cath again soon. I'll give it a few months and after that do the robotic SP. I don't have a median lobe or other issues so I am upset with the outcome.

On the diverticula, these develop in the bladder walls from the excess urine and pressure. I read once that when the bladder empties fully (from self-cathing or a procedure) then the bladder wall returns to health but I am not certian. The guys over at the Sel Cath thread could probably tell you better than me ( jimjames really know hsi stuff).

All the best and keep us informed. Neil

Just FYI, I have several friends who had radical prostatectomies to remove the entire organ.  I don't believe any of them have suffered that long term total incontinence that I still have from my two Turp procedures I've had this year, in March and May.    What all Turp procedures do, as far as I know, is to obliterate part of the urethra where it passes through the prostate.  So this has to heal and grow back over time.  I gather that for a lot of individuals, TURP works out OK and they get back to a decent life.  I just am not one, as I leak 24x7 and when I get up duing the night 2-3 times, I only pee 200 to 300 ml, and my stream is not great.

 Coversely, the removal of the prostate leaves the urethra intact,  Allso some procedures involve temporarily severing the urethra at the blatter mouth, removing the prostate, and then reattaching the urethra to the bladder.

I found it on the internet I just put in Turp Procedure.  It pulled up alot of questions and answers.  Look up Turp on here There have been alot that are for it but others that are not for it.  One question on the list that I read was a man that had one turp that he was fine had no problem with sex he did get retro but he said that he can deal with it.  Well 3 months later he had to have it again. This time he was not so lucky He had all the side effects and then some.  He could not even get a erection.  He then said that it was the wrong pick and wish he had never done it.  Look up Turp Surgery ( Long term and short term side effects ) and Transurethral Resection of the prostate.  I hope you make the right choise.  Sept 2 is just around the corner.  Turp surgery can take a long time and they sometime you end up with a catheter  Take care  Ken  

With the removing of the prostate you have to deal with the sexual side of it.  It's hit and miss. And sometimes never again.  The doctor destroys the bladder neck that is why you have retro orgasm.  If you still can it go straight into the bladder.  I am sorry that your still having a problem.  Were you talked into the procedure.  I know that sometimes that is the only way to open up the bladder.  Mostly if the medien lobe is so large it get stuck in the bladder  Take care  Ken

Below is an abstract of a US study on Gyrus Vs normal Turp.

Neal

Abstract

The Gyrus system uses bipolar electrocautery with saline irrigation to vaporize prostatic tissue and is compared to transurethral resection of the prostate (TURP) in a randomized prospective study with 1 y follow-up. Outcomes measured were fluid absorption, blood loss, period of catheterization, hospital stay, symptom scores, quality of life, flow rates, and post-void residual volumes at 3, 6, and 12 months. All measured parameters were similar, although re-catheterization rates were higher (30% vs 5%) in the Gyrus group. Clot evacuation rates were higher in the TURP group (19% vs 0%). The Gyrus device is safe and produces results that are similar to TURP at 1 y.

PMID: 12806380 DOI: 10.1038/sj.pcan.4500631

[PubMed - indexed for MEDLINE]

It may be a little better but it still comes with the same side effects.  Why would you want to take a chance with your sex life;.  Retro orgasms are the pits.  Thats if you still can have one   Have a great day  Ken