Gat Goren, PAE, LUTS, Part 6

Chicago Dave - 'If a smaller prostate is the definition of "success", then a laser or TURP procedure is probably the way to go. By their very design, these procedures result in a smaller prostate.'

Yes. But GG, aside from the absence of success/failure ratios, also causes minimum discomfort from the accounts of people here. That, in itself, is a big draw for informed people who are looking for a solution that does not endanger their bodily functions or their sexual ... performance.

Chicago Dave said...


Yes. The lack of permanent side effects was a big draw for me. For example, GG never causes retrograde ejaculation (RE), which some guys passionately hate but others don't mind. (If you don't know what this feels like, have your doctor write you a script for a couple weeks of Rapaflo capsules.)

when trying to get off of Flomax because i was having to take 2 to 3 per day and getting some dizziness, my doc told me to try Rapaflo because it was stronger.
In 2 weeks I was 10 out of 10 having Retrograde. It was awful. Maybe some guys don't mind that. I know some older men say that Retrograde is fairly common anyway. But this was a complete shutdown. I went back to flomax and my next visit, told him how it went.
That is when he cut me down on the flomax to 1 per day and added a daily Cialis to my regimen. I like this combination. But, I am 19 months post-PAE and 14 months since fixing the diverticulums in my bladder. The trial on the Rapaflo was between the PAE and the bladder surgery.
My uro desires me to try to get off the flomax altogether. We are going to try that later this Spring. I will still be taking Proscar and Cialis. I am sure, by now, the PAE and bladder surgery have done all they're gonna do so it will be a good time to try.

BEFORE ANYONE GETS A LASER OR TURP, try 2 weeks of Rapaflo and see what Retro is like, because Retrograde occurs almost 100% of the time with these procedures.

Update 1/11/15 ... down the rabbit hole ....

Have an appointment with my uro on Tuesday. Have an appointment with my GP tomorrow (Monday). Last 14 days have experienced 7 nights of no sleep every other night, voiding 2-1/2 to 3 liters of urine at night, going every 15 to 30 minutes until 6AM to 10AM, when I grab a few hours sleep. Each all nighter has been followed by a close to perfect night of zero to 300 cc of urine, 1 to no wake ups. No problems during the day. Tracked my liquid intake at about 2 to 2-1/2 liters per day. No differentiation can be made between daytime activities, food, liquid during the days preceeding the good and bad nights. Simply put, every 48 hours my body is dumping urine.
The PA at my uro office basically told me urologists don't treat nocturnal polyuria, it's an internal medecine or a nephrologist (kidney specialist) field of expertise. I'm only seeing my uro on Tuesday to verify this is true. If so, then uro's are just surgeons and obstruction and infection specialists. Once they have addressed those issues, then they can't help you.
Will present all my data to my GP and start over from scratch tomorrow with this nocturnal polyuria problem.
Bob

Post Edited (Bob_NJ) : 1/11/2015 1:45:52 PM (GMT-7)

Hi Clap,
My daily routine, food, liquid and exercise is pretty repetitive. If I am eating anything diuretic it ought to have the same effect on successive nights. Anything I eat on a good night I eat on a bad night and vice versa. Don't take any meds, just a b12 and a d vitamin after breakfast and a probiotic before. The brain twister of one good night then one bad night, repeated over 14 days would seem to eliminate anything I have done the same every day. Nothing I do during the day stands out as unique on a good night or a bad one. But on the good night I may sleep straight though and not void at all, on a bad one I may void 25 times over a 6 hour period and void 2-1/2 liters.
Regards,
Bob

ClapTheHammer said...
Hi Bob_NJ. 'Last 14 days have experienced 7 nights of no sleep every other night, voiding 2-1/2 to 3 liters of urine at night'.

voiding 2-1/2 to 3 litres. (Golly). Might I suggest that you are eating something with your evening meal that may be diuretic?? I sometimes have that problem in the summer and is almost invariably due to having fruit early evening or late at night. Or fresh vegetables. Perhaps it is your medication that is the culprit.

Eating cooked 'quacker' (Porridge - crushed oats ), infused with those little red berries just as I go to bed, seems to give me a better chance at night of not getting up but, when I do get up in the mornings, I can pass more than half a liter (3 goes) within 5 minutes. After walking the dogs and peeing more, things settle down well for the day.

Just some harmless inexpensive uncomplicated and even enjoyable suggestions.

Hi Rphguy,

It's good to hear you are doing well. Except for the nights when I get up 15 to 20 times and void several liters, I am too. Like yours, my stream is not great but adequate to do the job.
I still get up several times a night (last night was 5 times and 650 ml in the urinal) but as long as I can get right back to sleep I am fine with it. I was worrying I was retaining as well, but an ultrasound a few weeks ago showed just 7cc PVR, so that laid my fears to rest.
I stopped the flomax a couple of months ago. The flomax was comforting in that it gave me a stronger stream, but if I am not retaining a slow stream seems better to me than the flomax side effects.
I haven't cathed at all in the last 13 months since I had the emergency surgery to cauterize the prostate and bladder neck hematurias, remove bladder stones and resection the bladder neck.
I also sometimes worry about regressing. Hopefully it won't happen, but if (and/or when) it does, I'll just have to deal with it.

Regarding your uti's, would drinking more liquid help? I drink about 2-1/2 liters of total liquid a day, more than half of it bottled water, the rest light coffee and a JD and Seltzer highball at night with dinner. I read online that 2 to 2-1/2 liters of total liquid is a good amount for a man to drink in the abscence of heat or heavy exercise which would need more.

Seems we both have come a long way from the days of constant pain and anxiety.

Regards,
Bob

rphguy said...
Hi Bob, Presently, I am satisfied with where I am at.
I am able to urinate fairly completely, albeit slowly. I don't have a fast or strong stream but do empty.
The times I check, which now is infrequently, I cath out about 60-110 cc of urine. (I remember the days I cathed 3 times a day and would sometimes get 500cc).
I rarely get up at night.
I have no sexual dysfunction of any kind.
So, I really have no real complaints. I do, however, have this paranoia that it's going to regress, but I am sure we all have that concern. If I never have any change, good or bad, I'm very happy.
My only concern is that I occasionally seem to get UTIs, but no burning or pain. Only symptoms are my emptying is not as good and an odor in the urine. I was never bothered with this until my bouts with those horrible infections during my cathing days. When this happens I take antibiotics a few days and get better.

My doctor wants me off the Flomax, but I'm OK with staying on it, but if I can dc it, that'd be great. Less medicine is good..... if it works out.

Bob_NJ said...
rphguy,
What are your symptoms at his time that you hope to improve? Are you in retention or have a large PVR or have difficulty passing urine?
Bob

Rphguy,

Fixing the diverticulum was definitely the most important as evidenced by your low pvr at present. If the bladder neck resection should be necessary in the future, I can say my resection left me in much better shape than the GL laser did. For me the resection was like the second half of the laser, doing what the laser left undone. Although I've had ED for about 15 years, I never did get the retro with flomax, the GL laser or the bladder neck resection, which was a plus for me.

Regards,

Bob

rphguy said...
Bob, I drink bottled water all day. By lunch, I've usually drank a liter. At lunch, I drink my only Dr. Pepper of the day. afternoon and supper more water. I no longer drink coffee at all even though I love it. When I drink coffee there is about a 90% chance my prostate squeezes so tight I can barely urinate and the urine will smell strongly. I only rarely even drink regular tea. Only jasmine or other "non-tea" teas.

My doctors were undecided after my PAE what the next step should be.... either the bladder diverticulum repair or a bladder neck resection. After sharing my life story and concerns, my surgeon opted to do the diverticulum repair first and, hopefully, wouldn't have to do the other. He said that definitely I'd be the patient he'd rather not do laser or anything like it on. He said the next step, though, would be the neck resection.
I asked about doing a "mild resection" to limit my chances of retro even though I know I might have to do it twice. He said that he would go that route if it was necessary.
I like the uro I have now and also the surgeon. Both seem very interested in my "life" and encourage me to only go the other route as a last possible resort.

My regular general MD said that I went the option that he would definitely have went.

all is good.

Bob_NJ said...
Hi Rphguy,

It's good to hear you are doing well. Except for the nights when I get up 15 to 20 times and void several liters, I am too. Like yours, my stream is not great but adequate to do the job.
I still get up several times a night (last night was 5 times and 650 ml in the urinal) but as long as I can get right back to sleep I am fine with it. I was worrying I was retaining as well, but an ultrasound a few weeks ago showed just 7cc PVR, so that laid my fears to rest.
I stopped the flomax a couple of months ago. The flomax was comforting in that it gave me a stronger stream, but if I am not retaining a slow stream seems better to me than the flomax side effects.
I haven't cathed at all in the last 13 months since I had the emergency surgery to cauterize the prostate and bladder neck hematurias, remove bladder stones and resection the bladder neck.
I also sometimes worry about regressing. Hopefully it won't happen, but if (and/or when) it does, I'll just have to deal with it.

Regarding your uti's, would drinking more liquid help? I drink about 2-1/2 liters of total liquid a day, more than half of it bottled water, the rest light coffee and a JD and Seltzer highball at night with dinner. I read online that 2 to 2-1/2 liters of total liquid is a good amount for a man to drink in the abscence of heat or heavy exercise which would need more.

Seems we both have come a long way from the days of constant pain and anxiety.

Regards,
Bob

Hi Guys,
First a report on the Urolift. Both a friend and I had it about 3 months ago and I'd report we both had some improvement but nothing like suggested in the literature. I had a large prostate and chronic urinary retention…both are not claimed to be helped and they weren't.

I went on to develope mild bilateral hydronephrosis….meaning water logged (urine logged) kidneys as a result of retaining so much urine. By a fluke we caught it pretty quickly but not before my kidney function was impaired. Hopefully it will repair itself after I do a period of daily self cathing.

So now I can no longer wait to make a decision ( that was the idea of the Urolift…..putting off the inevitable shrinking the prostate somehow). Since I would not take a chance with Turp, green laser etc it's time to discuss the elephant in the (chat) room. PAE vs Varicocele/Gatt Goren.

It seems that there are 2 issues. One is shrinking of the prostate and the other is restoring the hydraulic drainage system a la Gatt/Goren. It seems to me from my unscientific, intuitive, seat of the pants reading of the posts here and scientific literature on line that both the PAE and the varicocele/Gatt Goren have approximately the same rate and success in shrinkage. Restoration of proper drainage is not claimed for the PAE.

Since I cannot afford the Gatt/Goren procedure I have to consider Varicocele vs PAE. We are at a very unusual time in urology in that there is obviously a transition from slice and dice turp style approaches to interventional radiology for the obvious reasons. The readers here are early adapters. The problem with being an early adapter is that some things are hyped (urolift?) and don't live up to their claims. Other things are hard to get in the beginning. Right now it seems easier to obtain the PAE than varicocele in the US. There are a lot of medical centers and universities doing studies. PAE is going to be the new turp. Medicare is financing some of there trials. Varicocele depends upon finding a compliant interventional radiologist and then having to school them in a little Gatt/Goren which I personally do not feel qualified to do.

So I guess the question is whether it's worth it to pursue varicocele for the "alleged" drainage improvements or just go for the PAE because it gives the desired shrinking of the prostate and it's easier to obtain. Two years from now PAE will be everywhere but I don't want to keep cathing till then!!!!!! What do you think?

Bob and RPH: Thanks for bringing us up to date. Your postings are always very informative. I'm so sorry for what you guys have been through.

###

Michael:

Thanks for reporting on your experience with the Urolift. Sorry it didn't work for you. I hope it worked better for your friend and that he favors us with an update. The main thing is that you caught the problems in time, before any damage was done. Bob's comments for you are incisive, as usual.

You say you are considering "Varicocele" repair. There are many types that have been mentioned on this board from time to time. There's the standard repair procedures done by urologists; there's a specialized micro-surgery approach mentioned by Skateman (Thunder has been researching this and will hopefully report back later this year); and there are various Interventional Radiologists' approaches that have been reported on this board from time to time. I think of these latter as "home-brew Gat-Goren techniques". I presume this last is what you are referring to.

I say go for it. This will probably require a lot of initiative on your part. Unfortunately, I can't help you: I was extremely happy to leave all the procedural details to Dr. Gat and Dr. Goren. Contacting some of the posters (off-forum) who've gone this route would probably be the place to start. That should tell you how practical this would be. I think there was a guy in Florida and another guy in Europe who went this route. And maybe a third guy, who did a hybrid, home-brew GG/something else procedure; I'm not sure I'd recommend this. I believe the guy in Florida got insurance to cover his particular case.

Good luck with your research.

PAE is definitely easier to get in the US than the GG-type of procedures. I think that it is being actively promoted by the manufacturer of the little pellets. I follow the posters on the http://www.patient.co.uk board who are getting Urolift and PAE. (No one there is getting GG except for me.) The reported success rate seems to be lower than what guys had been hoping for. That's probably a general rule for new devices for BPH. But the new lasers and the "plasma-button" procedures seem to be getting favorable reviews, so I expect that those will continue to be the mainstay of BPH treatments for at least the next 15 years in the US.

Keep us posted.

Martin: Yes, I saw the discussion about Stinging Nettle Root ("SNR") on the Patient.co.uk website. Actually, I think there might be a few discussions about it. I think someone was wondering last week if it had diuretic properties. Of course, I thought of you when folks discussed SNR!

Dave: I posted this on the Patient.co.uk website:

Hi Chuck: I have been on Nettle Root for 3 months along with Crataeva Stem Bark which improves bladder function. I have had the Gat Goren procedure with embolization of the internal spermatic veins around 25 months ago. But my real improvement seems to be coming from the 5 ml daily Nettle Root. I was diagnosed with a 50 gram prostate with medial lobe protrusion into the bladder. With the nettle root I get up once a night. So many researchers have written on the cause of BPH. I have explored this subject for more than 10 years. This is the best explanation I have gotten from an M.D.. who advises body building supplement makers who wish to offer higher levels of testosterone to their audience. It might be difficult to understand for the novice not attuned to the biochemistry of this problem...but one can learn!

"Estrogen, the essential evil stepsister becomes the dominant player as we age and also offers rationale into why prostate woes increase with age. Interestingly enough 5 alpha reductase activity actually calms down as we age as testosterone declines on the order of 10% per decade past about age 25. The finger of guilt has alway been pointed in the right direction.

We have learned a LOT about the impact of estrogen in the pathophysiology over the course of the last 10-15 years. In order for estrogen to impart effect, Estrogen has to stick to SHBG while this protein is attached to the prostate cell membrane. This linkage between E2 (Estradiol) and SHBG while attached to the prostate cell membrane directs IGF-1 (amongst other types of insulin like growth factor) to stimulate the actual growth of prostate cells and increase the volume of DHT receptors (but this is till moot with less substrate.)

Obviously, Nettle root extract binding to SHBG would halt this entire process because the linkage to E2 on the prostate cell membrane wouldn't happen. There is also a mild anti-E effect (in the form of an aromatose inhibitor) from nettle root that is gaining further acceptance. Additionally, there is a loss of DHT receptor concentration with less E2 available and perhaps more importantly, less E2-SHBG combos floating around.
Nettle root has truly been a successful prostate treatment and I would assume if the projected mechanaism that dictate pathophysiology are correct and hair loss (androgenic alopeica) follows suit - this is a completely moot point.

Information from: Dana Houser, MD, MHSA, CISSN (Industry author and Product Development Consultant)

Hi Martin

Are you still using these 2 products that you posted in the past

https://www.standardprocess.com/Products/MediHerb/Nettle-Root-12#.VHHYO74-CqR

Also, I suggest purchasing the MediHerb extract called ProstaCo which contains crataeva stem bark which improves the efficiency of the bladder.

https://www.standardprocess.com/Products/MediHerb/ProstaCo#.VHHWxb4-CqQ

Thanks!
Jeff

Michael Daner,
I know there are not many postings on PAE but I would recommend calling Inova to make a phone call appointment with Dr. Bagla. They tell you what you need to provide and check your insurance. They send you a description of the procedure. Dr. Bagla is very skilled. I wouldn't be posting if I wasn't so grateful I found PAE as an option and had good results. It's been 4 months and its not like before I had biopsies, but good enough I would do it again even if it only lasts a few years. I was at the point I thought I'd need a catheter if the Flomax started failing.
I hope this helps you.