Gat Goren, PAE, LUTS, Part 7

This is an email I sent to a fellow member who recently had a PAE:

"You took the big step and I must give you credit for not doing a turp procedure. I saw today my urologist and he mentioned that at Jackson Memorial in Miami they are now doing PAE. His one patient that had it done saw tremendous improvement. Prostate size reduced from 100 to 50....he sleeps through the night and his PSA went from 8.0 to just below 1.0.

As you know, I did the Gat Goren Procedure 3 years ago. Today, I went back to the urologist.The good news is that the volume of urine after a flow velocity test in the bladder, barely went up. I am scheduled for a trans rectal ultra sound in November which will tell me the size of the prostate. Given I have a rather large mid lobe (about 35 grams vs 22 grams for the rest of the prostate), I am pleased that my condition has not seemingly worsened for over 39 months.

I am still taking herbs and for the first time ever, a drug (Cialis) for treatment."

Sashman - However Nettle root and Crinum Ltifolium stood out as worth try.

I grow Amarilis flowers. (CRINUM LATIFOLIUM Amarilis Plan). Don't know if any one is Crinum Ltifolium though. One variety is white with some red lines inside. Never knew it was a herb though. Not clear if the active substance is in the leaves. Wish it was. Can they be eaten like a salad?? Plenty of them. Snails like them too. And slugs.

Information on the internet is often written by people with an 'agenda'. Quite often umbilically connected to their bank account. So. I am a bit skeptical until I find some academically backed papers.

Bulbs can be huge. More than a kilo in weight. Striking flowers. Especially the red variety which is a huge splash of color. I sometimes get a 'full head' of six huge flowers.

Hi everybody,

I am disheartened - maybe it goes with Dutasteride! - that Gat Goren seems to be still so much a closed shop? A month ago now, more, I saw my Consultant - NHS, London - who had kindly shown an interest. But, the perenial question about lack of trials, and "What likelihood that ablated venules etc will re-form, as venules tend to do?" I respected her good accumen; I had no answer - other that to suggest Varicocele treatment probably had a 2 + year success....?

Feel in a very frustrating jam! - a remarkable Proceedure which suggests the actual cause of BPH; which gives a clear answer to the paradox of why BPH goes along with low arterially measured testosterone; which affirms Orsted et al's 2009 demonstraton of a statistical (....just that) link between BPH and PCa; which in skilled hands is minimally invasive; and which puts a big big question mark to my thinking, on popular Arterial Embolisation etc etc (of a gland already awash with FT!) - BUT REMAINS COYLY IN THE FAR HINTERLAND OF GOOD OLD SNAKE-OIL ALLEY!

And yes, Varicocele proceedures surely are part of the scene - and of GG's history - but for those of us - so very many of us - simply with BPH - and potential PCa - got friends, you guys? - why, why no clear clinical progress? If it's a cross-over between Veinous and Urological expertese - surely these surgeons do their bed-time reading?!

Somebody, Help!

Eddy

Post Edited (Eddy) : 9/13/2015 5:02:46 PM (GMT-6)

Frank in Florida

thank you for the insight that Sleep Disordered Breathing (SDB) elevates the level of a peptide that prevents slowing of urine flow from the kidneys such as is supposed to occur during sleep and as a result it is possible to eliminate some forms of nocturia by using a CPAP machine to eliminate the peptide’s elevation , the urine flow and so the SDB.

Was it by experimenting at home with a CPAP machine you were able to determine which pressures did the trick – in which case may others of us perhaps have a fighting chance of doing the same? (I say ‘fighting chance’ as I see from your ‘bio’ you are a retired physician and so would inevitably I imagine have brought to bear on any such pressure determination ‘at home’ your training and experience.)

Or is such pressure determination on one’s own impossible in principle and instead one of necessity relies on the most advanced of sleep clinics and its staff if one is to arrive at the pressures that effect a cure of the SDB / nocturia and hence elimination of the elevated levels of the peptide and so arrival at the holy grail of 9 hours unbroken sleep - 9 hours that presently take me 14 hours, woken as I am every 1.5 to 2.5 hours to pass (up to) 500ml and it then taking time to get back to sleep? (I note there was never sufficient noise to trigger a very sensitive Voice Activated Tape Recorder I set running each night over several weeks back in the 80s – whereas had there been OSA I understand there would have been ample noise to trigger it into recording - so I conclude my SDB is caused by Central rather than Obstructve Sleep Apnoea.) (I conclude that there is CSA from there being, on my waking the penultimate time each morning, perfectly peacefully (peacefully in the sense of low heart rate and no particular urge to breathe, and certainly no struggle to breathe) a thunderous ‘diving reflex’ (explosive elevation in heart rate) after I decide, three or four seconds after regaining consciousness amidst all this peace and quiet, that I might as well take a breath (such a diving reflex requiring that there have been a prolonged failure to breathe in the period preceding that first breath (or so I was advised by a Consultant at Oxford University’s John Radcliffe Hospital whom I bankrupted myself spending an hour questioning one Friday afternoon in the mid 90s, which I mention because of the following tale about Sir John Radcliffe. He was Royal Physician to King William 3rd, a King of England Scotland and Ireland. Sir John liked his sleep. Summoned to the Palace in the wee hours to advise the King on the King’s spindly legs he gave his verdict as he departed: 'I would not have your Majesty's two legs for your three kingdoms.' the offended King thereafter mortifying the temptation to disturb his physician’s sleep.)

I would also be most grateful for any recommendation for make of CPAP machine.

Frank in Florida said...

Incidentally, there are many other causes of nocturia. I have sleep-disordered breathing, related to obstructive sleep apnea (OSA), and that is the major cause of my nocturia. I am on CPAP and only need 6 cm H20 pressure to fix my breathing, but need 8 cm to get rid of the nocturia. The mechanism is atrial natriuretic peptide which is elevated by OSA and reduced by using CPAP. In BPH you tend to have multiple small voids during the night, due to incomplete emptying of the bladder. In OSA you tend to have multiple large voids because the urine flow from the kidneys doesn't slow during sleep like it is supposed to. If you are suspicious you might have SDB or OSA, Google them and try to figure it out. In my case, I started with SDB, BPH, and mild interstitial cyctitis which was very confusing, but they are all now under adequate, not perfect, control. BPH was actually the easiest to take care of, at least for me.

This is the best forum I have found for discussing BPH, and I don’t want to hijack it to discuss sleep apnea. There is a very active and very helpful forum at www.cpaptalk.com. Warning: you can spend a lot of time perusing the messages there.
Ac72—I was getting up 3x/night to pee before starting cpap. When I had my sleep study using cpap I slept straight through the night despite being wired with a couple dozen electrodes, including EEG. That’s when I started reading about the effect of OSA and cpap on urine flow. I barely made any noise when I snored (really just noisy breathing) and didn’t have significant apnea. The tech said that whenever I started to go into a deep sleep, I would start to snore and wake myself up, but not to full consciousness. As a result, I got very little REM sleep.
As far as purchasing a machine, there is plenty of good advice at cpaptalk.com. Just a couple of things: I prefer Resmed because the expiratory pressure relief is more natural (but I don’t use that feature any more). The most important thing is to get a machine that records full data. If you get your machine through insurance, they will always tell you you are getting the Cadillac of machines…don’t believe it. They will try to give you the cheapest machine because the reimbursement is the same. They will tell you the machine does record data…they won’t tell you that it is only compliance data. You want a machine that records the flow for every breath you take during the night. There is software available for free download from Resmed to analyze the data, and cpaptalk.com also has a version of software available for free called Sleepyhead. You really need to be able to analyze your own sleep patterns and change the settings on your machine.
In Australia, CPAP machines are available over-the-counter from any big box store, but in the US a prescription is required.
You mentioned central sleep apneas. For years before starting CPAP I noticed during the day that I would sometimes forget to breathe for a prolonged period and then have to take some deep breaths. I guess my oxygen sensors were desensitized. That has disappeared since I started cpap. You are the only other person I’ve heard of that has mentioned that phenomenon. Thanks.
I just want to reiterate that I believe that the embolization procedure done here in the US by radiologists to treat varicoceles is equivalent to the GG procedure and a heck of a lot cheaper.
Good luck!

Clap

The person asserting:

Frank in Florida said...

I just want to reiterate that I believe that the embolization procedure done here in the US by radiologists to treat varicoceles is equivalent to the GG procedure and a heck of a lot cheaper.

is a highly experienced PHYSICIAN.

Am I missing something or isn't this a wonderful bit of news? Since the opinion is that of a physician and insofar as cost for a large number of interested parties is no longer a factor - since a large numbers of Americans can now prudently 'trial' GG (equivalent) inexpensively, on government insurance - I'm UK based so I'm on shaky ground here – and with no need to travel overseas, isn’t the standard of proof you hold out for so sensibly inevitably going to accumulate rather quickly from the numbers undergoing GG (equivalent) Stateside if the forum organises for it a little – well maybe more than a little, but doable - ?

Post Edited (ac72) : 9/25/2015 6:21:36 AM (GMT-6)

ac72 said...
I feel I am being a fool rushing in where angels fear to tread persisting in the face of your silence but I would be most grateful if you could indicate if you think I am being naïve being perplexed there hasn't been considerable interest in Frank's of Florida's disclosure.

ac72--

Has Frank discovered a new Gat-Goren Fountain of Youth in Florida? There are probably many forum readers asking themselves this question. In my mind, this remains an open question, waiting to be given a definitive answer. By all means delve into this problem and research it. Unless someone takes the lead, we might never know. Just how close an alternative to the standard G-G procedure is provided by Frank's interventional radiologist?

It's not that I'm doubting Frank, who is after all a physician, while I am not. It's just that I'm by nature skeptical.

Best of luck to everyone.

Back again, just to say a very old mate of mine who now lives in Tassi had PAE carried out in Sydney about 6 wks ago. He is really pleased with the results although he is probably not the type of person to say 'Wow, fantastic I'm cured!' so it sounds as if it has been very successful for him. I think he was about the 10th person the interventional radiologist had done & he had a general anesthetic which is unusual but that was probably because he is a terrible patient. Anyway anyone in Aus. there is a man in Sydney that does the op.

AC72 - I feel I am being a fool rushing in where angels fear to tread persisting in the face of your silence but I would be most grateful if you could indicate if you think I am being naïve being perplexed there hasn't been considerable interest in Frank's of Florida's disclosure.

Hi. This is a free discussion forum. I have my opinions which are not 'written in stone' and everyone who writes here telling of success or otherwise with any procedure, influences my opinion. Many people who write are in a far more serious position medically that I am and I would never dare to advise them personally. Apart from the fact that I am in no way medically educated.

However, having said that, I do have serious reservations relating to the GG procedure. Based on that absence of true medical trials for the procedure. I cannot judge the theory behind the procedure but do find it very interesting that GG were refused a patent on the procedure inside the US.

On the other hand, the Florida Clinic has no medical trials either. The Florida clinic is very much cheaper though.

Actually, a year is not that long. If you look at the original finasteride studies, it took about that long for relief.

The "Florida clinic" does not perform the varicocele procedure to treat BPH...I'm the one who pursued doing it there. I didn't even mention beforehand that I had BPH or that I was hoping the BPH would get better. I was considering the various options for treating my BPH (TURP, laser, etc.) and chose embolization because I needed it anyway (symptomatic varicocele) and it was way more benign than the other procedures. I knew that it was an unproven procedure and might not work, but it was worth the gamble because it had little risk and was covered by my insurance.

I chose the clinic in South Florida because it was an easy drive to get there, and their website indicated they had a lot of experience treating varicoceles. Probably all interventional radiologists here in the U.S. have some experience treating varicoceles, but it might be a low volume procedure for them.

GG were likely denied a patent for their procedure because it differs little from the usual varicocele procedure that has been done for decades. They presented a lot of data to support their theory, but it was really just explaining why treating the varicoceles also treated the BPH.

BPH is such a mystery. I am always coming up with my own theories and then shooting them down. I am now wondering if the symptoms of BPH are due to the prostate physically pushing up on the lower part of the bladder interfering with the actions of the various nerves and sensory receptors in the area. Who knows...?

Hey Dave & Friends
This is for your list of success and failure of various treatments. Here's my original comment:
"Just wanted to give my experience with Urolift which was basically disastrous. I had the procedure in Oct 2014. I had a prostate about 85gms and retention of up to 700 cc. For a couple of months I had a very slight improvement in symptoms ie frequency, urgency etc. However about a month ago my kidney functions started to decline (rising BUN & Creatinine). Kidney sonogram showed mild hydronephroisis (swelling of kidneys). Aparantly before the Urolift I had chronic urinary retention. The trauma to the urethra put me into acute urinary retention, my bladder completely stopped functioning. I'm now cathing 3 x a day and taking advodart &flomax hoping that my bladder will regain function. It seems to have been really stretched out. I'm now investigating the Holep which seems to generally overcome the non working bladder. Needless to say the Urolift, which I saw as benign, a temporary way to avoid the bph drugs, was one of the worst decisions of my life."
Well believe it or not, almost a year later, you can put me in the positive camp for the Urolift. I was not a perfect candidate since I had a lot of retention and it doesn't address that. I started cathing to deal with that which shrunk my bladder and I started taking tamsulosin so I can't give an endorsement of what only the Urolift has done but as of now I don't think about or worry about peeing at all during the day. I have absolutely no urgency or frequency in the day. Curiously I do wake up 2 or 3 times during the night. Sometimes I can go for 4 hours if I cath before bed. So daytime totally cured and still some nocturnia. Basically a happy camper in the positive camp for Urolift. However, even with my retention reduced to 300 ml (from catching), I knew all this was just temporary and I needed to eventually do something that would deal with the retention issue which is either varicocele or PAE in my book.
I'm going to post my thoughts and questions about GG/PAE/Varicocele in a separate message since this is getting ridiculously long!

Michael,

I'm glad that Urolift and Rx drugs have given you relief. We discuss every approach to BPH on this forum: PAE, Urolift, GG, laser, TURP. It's whatever folks want to discuss. First-person reports always make for the meatiest posts.

I don't know anything about the varicocele repair procedure performed by Frank's doctor in Florida, so I'll have to limit my comments to the "standard" Gat-Goren procedure performed in Crete/Tel Aviv and PAE. If you decide to do a deep dive into the Florida clinic, many of us would be interested in learning what you discover.

For most US patients, PAE will likely be more accessible, it seems to me. Its cost is sometimes covered by insurance or by the clinical trial itself. Even if you have to pay out of pocket for it, I think it's a lot less than GG. There's some publicity about it now so that it has some credibility with physicians. The patient reports on patient.com have been very good--which surprises me as I was initially skeptical of it. It's offered in several locations in the US. There are two medical centers--Duke and UNC--near me in the Triangle that do it. If you have it done here, maybe we can get together for lunch.

The main advantage of GG is the *promise* of wider benefit(s). (This is a promise, because there are no guarantees in medicine.) I mentioned how it stabilized my extremely low testosterone levels and relieved a bad mental depression I experienced before the procedure when my T levels were wildly variable and occasionally off-the-charts low. I'm not particularly suggestible, but I think this was a bona fide effect (documented by T levels taken before and after the procedure). There is also a paper by Dr. Gat where he talks about this effect. Other *possible* benefits that have been bandied about involve male fertility and maybe even bladder health.

We can talk a lot about the *differences* between PAE and GG, but don't forget the manifest similarities: Both are performed by interventional radiologists, not urologists. Both procedures HALT (and partially reverse) the growth of the prostate. Some guys don't mind getting laser or TURP every several years. But that would bother me.

BTW I will post my six-month update at the end of the month. So far, no new changes.

I'm a paitient, not a health professional. We must all work out our own prostate salvations.

Good luck.