Gat Goren, PAE, LUTS, Part 7

Bob,

God only knows that you deserve some peace of mind after all you've been through, Bob. I follow you on the Topix "Greenlight complications" board, too.

Bob_NJ said...
Hi Dave,
It's really good that GG worked out so well for you. Do you have any thoughts on what causes the variations in symptoms? It has been a complete mystery to me.

I only wish I knew!

I feel the variations, mostly on a weekly or monthly cycle, and try to speculate what's happening. But I haven't a clue. There's a tendency in conventional medical thinking to treat all the various "BPH" symptoms as a simple function of the size of the prostate, but I think that is far from true. The body is a complicated system and is always in the process of adjusting. According to Dr. Gat, it's not just the prostate that's involved in "BPH" symptoms. The bladder wall can be affected too by the high levels of testosterone, and not function as well. I think I've noticed this for almost 35 years, well before I had any "prostate problems". The testicles can also function less than optimally if the drainage to that area is poor. When the definitive textbook is written, they will probably find a few other tissues that are sensitive to "mere varicocele".

-dave

Frank: Thanks for the update. Very informative.

Here is my updated running list of progress for posters on this forum:

Let me know of omissions and corrections.

######
Running List of Guys and Their Progress

GG, with at least some improvement and no side effects:
Chicago Dave: In 12 months, prostate size shrunk by about 50%. After two years, off Rx meds. In three years, much better but some urgency and discomfort remain.
LiamIreland
Golfosca
AndyAction: Good results, now going on 3.5 years later.
Nosheds: After 18 months, prostate volume has dropped from 127 to 84. Symptomatic improvement.
Martin Victor (some improvement but not satisfactory)
Graham
EddieG
Carl1950: After 12 months, improvement in symptoms, "change affects all areas of my life." In 7/31/2015 update, prostate size decreased from 109 cc to 85cc.
Jeff: After 8 months, frequency went from 1 to 3 times a night to no nighttime visits in the past month.

GG, neither improvement nor side effects:
Thunder
MGL59: Problems continued and he recently got a "button TURP".

Second-hand reports of GG:
Martin Victor knows Amichai - an Israeli with improvement
Nosheds knows four other Israelis with improvement
News story about Israeli Prime Minister's GG operation, which "reportedly yielded positive results."
ClapTheHammer's GP/Family doctor has a patient with GG with "no noticeable improvement"

PAE
1rphguy: Successful (after bladder diverticulum removed). Within 6 months, prostate shrunk from 55 to 32. Improved symptoms. Update 10/10/2015: "I am doing well now post-PAE, but still have occasional flare-ups." He has discontinued Rx meds, but some foods still provoke it. He is currently looking into treatment for his varicoceles.
Gavrikon: "nightly excursions to the bathroom have been halved"

[I remember seeing reports from two or three other PAErs on this board, all but one was positive. If someone can locate their details, I'd be glad to post their results, too. There are a few reports--mostly positive--on the patient.info forum.]

Other procedures (please add names):

Left and right ISM veins sclerotized by a Belgian IR:
Dusab: Improvement, no side effects.

Sclerotherapy in Florida to treat varicocele:
Frank in Florida: Varicocele resolved and BPH symptoms "almost symptom-free" (except for urgency)

Bilateral sclerotherapy in Australia (with Dr. Goren's input):
IRD1956: After 8 months, PSA has dropped from 17 to 8.9.

TURP:
Seasign: Some "after effects," but prostate size reduced and urination frequency reduced.
Bob_NJ: Two Greenlight laser procedures in two years, followed by hematuria and TURP in April 2015. 'Some "after effects," but prostate size reduced and urination frequency reduced.'
Sashman: "No symptoms at all, can sleep all night, good flow rate and no 'accidents'" and no RE.

Button TURP
MGL59: After 7 weeks, still "up and down" in terms of symptoms. He gave his surgeon a copy of a paper about reducing incidence of RE during TURP, and the surgeon tried to follow it--with success!

Other:
Zoesman: Improvement from ISM sclerotization short-lived--got improvement in symptoms from PAE.

#####
Edited 8/26/2015: Added MGL59's and Sashman's reports.
Edited 8/22/2015: Added Clap's second-hand report
Edited 8/6/2015: Updated Andy's report
Edited 8/1/2015: Updated Eddie's report
Edited 7/9/2015: Updated MGL59
Edited 7/8/2015: Added Israeli Prime Minister's report
Edited 7/7/2015: Added Jeff's report.
Edited 7/6/2015: Added Bob's report.
Edited 7/5/2015: Added some updates.
Edited 4/27/2015: Added Gavricon's update.
Edited 4/10/2015: Added Carl1950 to the list.
Edited 3/13/2015: Added EddieG to the list.

Post Edited (Chicago Dave) : 10/10/2015 11:17:14 AM (GMT-6)

Bob_NJ said...
Hi Dave,
You can add my name to the TURP column (I had the classic TURP done this April after a second hematuria following two Greenlight procedures in the previous two years). I think: 'Some "after effects," but prostate size reduced and urination frequency reduced' is pretty accurate.
Bob

I added your report as you requested, Bob.

Dave, Thanks.
I have a question for you and others who have reported decrease in prostate size after a GG or PAE procedure. How is the prostate reduction measured? Is it the sonogram reading using the formula of 1/2 HxWxL in cm = prostate mass in g. ?
I have been relying on my urologist telling me approximately how much tissue he has removed, but never had a follow up sonogram reading. For one thing, previous to my last turp I had a prominent median lobe that protruded into the bladder, so my prostate looked more like a gingerbread man than an oval shape, which is what the formula is most accurate with. For another, I was told the outer prostatic capsule doesn't shrink comensurate with tissue removed inside the capsule, so it seemed like there was no way to get an accurate post procedure measuerement. So it ocurred to me to ask the forum members how their post procedure prostate reductions were measured.
I'm seeing my uro this afternoon for a followup on the turp. Naturally after three procedures in 3 years I'm anxious to know what the future holds, how fast my prostate will regrow, when will another procedure be needed. A good starting point would be to get an accurate measure of my prostate size now. He told me it is now 40g. with a non-protruding median lobe of 15g., but independent corroboration would be a plus in order to guage it's rate of regrowth.
Bob

Chicago Dave said...

Bob_NJ said...
Hi Dave,
You can add my name to the TURP column (I had the classic TURP done this April after a second hematuria following two Greenlight procedures in the previous two years). I think: 'Some "after effects," but prostate size reduced and urination frequency reduced' is pretty accurate.
Bob

I added your report as you requested, Bob.

Thanks Dave,
My uro agreed to send me for a sonogram 3 times a year, starting now, to monitor my prostate size. He said normally he wouldn't do that, but because I was a rather unique case, he thought it was warranted. It won't stop my prostate from growing, but at least I'll be aware of what is going on, and might be able to develop an appropriate strategy to deal with it before it becomes a problem again.
Bob

Chicago Dave said...

Bob_NJ said...
Dave, Thanks.
I have a question for you and others who have reported decrease in prostate size after a GG or PAE procedure. How is the prostate reduction measured? Is it the sonogram reading using the formula of 1/2 HxWxL in cm = prostate mass in g. ?

Hi Bob,

The sonogram equipment calculates the volume (same as weight, since 1 cc weighs very close to 1 gram) automatically, or with very limited operator input. It's not like the doctor spends a lot of time calculating it; they calculate it almost immediately.

I once asked the radiologist how it was calculated, and he said it used the formula for the volume of an ellipsoid. If the prostate were irregularly shaped, I would assume that the automatic volume calculations would be inaccurate.

-dave

http://www.afr.com/lifestyle/health/mens-health/israeli-prime-minister-opts-for-a-novel-treatment-for-his-enlarged-prostate-20150707-gi5sg1

I had GG last November (so, 8 months). I had no symptom improvement (in fact, worse) and prostate had not shrunk at all. As I mentioned in a previous post, when I showed my urologist the ultrasound that I had given to Dr. Gat prior to the procedure, he immediately said, "You have a bladder stone which needs to be removed." I was quite perturbed by that. My conclusion was that either Dr. Gat did not even look at the ultrasound or he did and for whatever reason did not see or tell me about the bladder stone, which is incompetent, IMO. I am open to some other explanation. I had mentioned to him the stone in an email and got no response as to why he did not tell me about it.

Anyway, the bladder stone symptoms got really bad, and I had to get it removed (one stone around the size of a peanut M&M). I consulted with a new uro in Rochester, NY. He said that he strongly recommended getting the prostate resected along with removing the stone. He said that the stone(s) would likely come back as well as other issues related to prolonged BPH. My prostate was over 100g, so very large (I am 56).

He convinced me that I need to do something about the prostate. I was not going to wait any longer to see whether GG was going to help. BTW, I gave him a copy of the GG study and he, like my other urologist, dismissed it. He said that at the very least, it probably should not have been done on such a large prostate. IOW, that it might work on a smaller prostate but not a large one.

Anyway, I had button TURP (and rekloval of the bladder stone with a laser) 2 days ago with a spinal (no general - I requested the spinal). It went great. I had heard all kinds of horror stories (on these types of forums), but so far everything has gone great.

I was awake during the procedure but barely remember it because of the sedation. The recovery in the hospital was great. I went home about 3-4 hours after the procedure, after the spinal wore off (my lower body was completely numb after the procedure).

I kept the catheter in until the next morning. It was not uncomfortable at all. Didn't even feel it. No pain or discomfort either.

The next day (yesterday) I removed the catheter myself (the uro nurse said that I could do that if I wanted rather than come into the office). No problem - just cut off the end of the extra tube to release the fluid in the balloon that holds it in, and then pull it out like a magician pulling out a handkerchief from his pocket!

Peeing was painful for a few hours after that, but the burning subsided by the end of the day. Blood in the urine of course and some clots. By the end of the day, the urine was mostly clear, maybe a slight pink tinge. The button (bi-polar) TURP greatly reduces bleeding during the procedure from what I understand. I would never do the regular TURP - only the button TURP.

I never had to take any pain meds. Today, I feel fine, although of course I have to take it easy for a while and no strenuous activity for a couple weeks. I have to remind myself that I just had the TURP 48 hours ago so as not to do too much!

My stream is already better than it has been in years. So far, there is still some urgency when I have to go and I am peeing anywhere from every hour to every 3 hours or so, but I think that is normal right after the TURP. Drinking lots of water of course so that is contributing to the frequency.

I am thrilled so far, although it has only been 48 hours. No leaking or incontinence, BTW.

I talked to the uro about retrograde ejaculation (RE) of course. According to the research, most with TURP end up with RE. The studies claim that with Green Light laser, only 1/3 end up with RE. Both of my uro's said that that is nonsense (that almost everyone ends up with RE regardless of the type of procedure), however, I suspect that they don't really know the numbers.

I gave my uro a copy of this paper from the UK:

http://www.ncbi.nlm.nih.gov/pubmed/23952037

where they were able to preserve antegrade (normal) ejaculation in 91% of patients who underwent TURP by carefully avoiding certain areas of the prostate during the procedure. He read the paper and said that he would try and follow its recommendations. We will see what happens in a few weeks and I will let everyone know the result.

Anyway, I am down on GG and up on TURP, so far at least. If anyone is considering surgery rather than GG, PAE, urolift, or what have you, I recommend talking to your uro about button TURP and I recommend discussing with him the above mentioned paper. I also highly recommend a spinal rather than general (last time I had a general for a sinus procedure, my throat was killing me the next day from the tube).

I also highly recommend you talk to your uro about the consequences of not treating the prostate other than with drugs. According to my new uro, it can eventually cause all kinds of problems with the bladder and other things. He said that eventually I was going to need to reduce the size of the prostate and open up the channel and that using the drugs (I was on Cardura) was only delaying the inevitable and creating long-term problems (like the bladder stone I had already developed). That was the first time I had heard or read that.

Thanks to Dave for his efforts in compiling the precis/'running list' - a handy quick ref resource.
Some recent remarks following my TURP in late February :

Still attempting to drink lots of water but not getting up more than twice a night.
Urgency issue has settled down but tend to keep a fluid total in my head and make plans accordingly. For some reason moderate exercise will result in an extra pee trip ( I get out of the pool! )
Discomfort has also abated to seldom and usually only in response to excessive time sitting.
RE is still evident but does not dissuade me.

Rob

ClapTheHammer said...

Thank you for that link IRD1956. I have been trying to find a link to an Israeli newspaper in English but your link to an Australian newspaper does confirm certain 'facts' that have been thrown about on this thread and it's 'parents' for two years now. What we are discussing is 'prostate testosterone manipulation' in that blood vessels with defective one-way valves are, according to the claims of the 'good doctors' are blocked off. Not quite clear what happens then. Do other veins with correctly functioning one-way-valves 'take over'? If the body reproduces some of the blocked veins, do these 'newly grown' veins have correctly functioning one-way-valves.

One thing that the article states quite clearly is that the procedure is considered to be experimental. 'Although the method is in use for BPH in Israel, Netanyahu was reportedly part of a clinical trial. To protect his privacy, he was smuggled in and out of the hospital, on two occasions, in delivery vans.'

Glad you're still following the board, Clap.

Did I detect a note of skepticism in your take on the news report? I find the story surprising because this is the first famous patient of the GG procedure that I know of. Other than that, the story was unexceptional.

There was a long discussion about how GG works a couple years back. The ISV valves, once bad, can't grow back. This is a shame, because if the human body could replace bad ISV valves like a shark replaces lost teeth, then there'd be no need for a GG procedure. The GG procedure closes off the entire main vertical venous system of return from the prostate area; I mean it closes off the Intraspermatic Veins (ISVs) and any collaterals. Blood can build up in these and the "column" of unoxgenated blood can "reflux" back down to the prostate, blocking its drainage. After GG seals the ISVs and any collaterals, the blood returns to the heart through smaller veins. It seems that these smaller veins are a much better return system than ISVs with non-working valves, but not as good as the ISVs with patent valves. Dr. Gat once sent me an email with a lot of math equations describing the fluid dynamics of the system, but I couldn't understand them.

By the way, I haven't heard a peep out of Dr. Gat for over two years. I'm posting here solely as a patient. He's more into the science than the promotion, so I wouldn't expect him to post to this board. I for one find it encouraging to hear that there is some type of clinical trial going on.

Best of luck to all.

Another reason to be skeptical of this procedure. It has been done for many years now and there are no peer-reviewed studies? That is a very large red flag, in my opinion.

I agree. I would have opted for it two years ago although my symptoms are pretty marginal judging by some of the commenters here. The money would not have been a barrier if I could expect an 80% chance of success.

As it is, Bibi is a high profile patient and his success or failure with the procedure will possibly be a watershed for Gat Goren. As far as I can gather, there was no attempt to publicize this and it was originally simply referred to as 'prostate treatment'. But now the press is latching on to the 'difficult' fact that The Israeli Prime Minister has an experimental procedure performed on him. From Bibi's point of view, he goes to hospital and leaves after 4 - 6 hrs with no obvious pain involved. If there really are medical trials in progress, and the mention was not simply to save Bibi embarrassment for having a procedure that is not really permitted outside of medical trials and cannot be done on any national health available in Israel, then it is not a positive thing for an Israeli PM to have published in the media. There is a case for publication of the fact that Bibi has been treated for prostate enlargement but the information concerning Gat/Goren seems to have been. 'not mentioned' at the time. Elected persons in a democracy should have facts published about medical treatment. Didn't President Johnson have published that he had had polyps removed from his colon? Or was it Reagan? Can't remember.

Have a great day.

This thread focuses on whatever guys want to post about. When it started it was rather limited to GG, but later on guys started posting about their experiences with PAE and other methods. So the thread expanded to accommodate the new interest and new information. I myself find first-person reports from patients very interesting...even now. The more the merrier, I say.

MGL: Thanks for the update. I hope things continue to get ever better.

Thanks Dave!

A bit off-topic, but since my TURP last Tuesday, I have been constipated (I tend to be, anyway). They discourage straining so I took 2 Ducolax before I went to bed the other night. Had some bad cramping in the middle of the night and it worked fairly well but not great. Last night I took 3 pills (they recommend 1-3). OMG! Had terrible, terrible cramping, nausea, cold sweats, dizziness, in the middle of the night. Though I was going to die and I almost called 911. The pain and other symptoms subsided after a few hours, but I am still feeling a little queasy. AFTER I took the pills, I read some reviews for Ducolax on Amazon and many people had the same or worse reaction! I would suggest NEVER, EVER taking this OTC laxative. How do they allow it to be sold and to write "gentle" on the box?