Gat Goren, PAE, LUTS, Part 6

Liam,
Thanks for posting your success story with GG. I'm happy for you. I also don't get updates on all occasions. Sometimes i do and sometimes if I haven't gotten an update for a few weeks I'll log on and catch up on several new posts. I always check the "Notify me of reply postings by e-mail box", but if I stop getting notifications I won't get another one until I add a post to the thread.
Bob

Liamireland said...
I have just passed the 6 month stage, having had my Gat Goren procedure on the 9th September.

I posted that I had very quick results, starting after just 3 weeks and after 2 months I had almost all my present improvements achieved, there may be further improvement happening but not at any level I can detect.

As I stated before my life has been transformed by this procedure and I only wish everyone could have the same result. I sleep through most nights, I do not have to plan my movements around the availability of restrooms and the terrible urgency that was the bane of my life is no more. I was informed by the 2 doctors that improvement could be slow and could take a few years, I do not know why my improvements happened so quickly, I am just very happy it did. I am waiting now for the tests that Gat Goren wish me to do ad I will post those results when I have them.

I notice that for some months now I am receiving no notification e mail when a new post appears on the site, is anybody else experiencing this difficulty ?. Since this started to happen the rate of posting onto the site seems to have declined ?.

BPHOrC

A template biopsy will not only tell you if you have cancer but also if it is aggressive or not, which is extremely important. An MRI will more reliably tell you where & how much cancer is there.

I would not delay, you need to know if you have cancer asap, before it spreads.

BPHOrC said...
martin victor: Thank you! I completely forgot about the MRI option. I will definitely research this option and demand it from my urologist.

BPHOrC: As long as you're researching post-PSA options, maybe you should research something called "PCA3." I Googled it and it's a special test that looks for markers more specific to PC than the PSA test. I know nothing about it other than what I learned from five minutes with Google.

It was mentioned on an interesting Patient.co.uk thread:
http://www.patient.co.uk/forums/discuss/has-anyone-out-there-had-a-prostate-artery-embolization--301859?page=0#1160122

Search for "PCA3" to find the discussion.
There's an interesting discussion there about biopsies too.

###

Eddie posted a very informative post. It mirrors a lot of my experience, but I won't bore readers by rehashing details.
MGL59's post was also quite interesting.

###

Hey, you other lurkers out there...Step up and pay it forward! Your bros are depending on you. Whether you had a PAE, a Urolift, a GG or something else, tell us about your experiences. Pleased or peeved, let us know.

And those of you who are planning a procedure in the near future, check in beforehand so we can track your progress. Thanks.

End of Public Service Announcement.

Post Edited (Chicago Dave) : 3/15/2015 12:01:18 PM (GMT-6)

Not to make light of your conflicting results, but it reminds me of the old saw, never go to sea with two compasses. Either go with one or three. Good luck in figuring this out.
Bob

Hi Karnal,
First I would say as long as the foley cath is not painful, you can keep it in for a few more weeks while you figure out what to do. The last time I was in the hospital the guy in the bed next to me had worn a foley for 2 years. He actually didn't mind it, but his uro talked him into a PVP and he was not happy. I think he was in his mid 70's. I have had the foley in for a couple of weeks on three occasions. Unfortunately, for me the foley starts to cause bladder spasms after a few days. But if it is not painful, I'd say keep it in until you have decided the next best step. Another alternative would be self cathing 4 times a day, but if your urethra is shut tight, that might be difficult. Another option is to keep the foley tube in but close it off with a clamp instead of a leg bag during the day, and release the clamp every couple of hours to urinate, then put the leg bag back on at night.
In my opinion I wouldn't want a urolift. Two posters on this forum had the urolift, one had OK results, the other had disasterous results. I believe the post was either in this Part 6 of the thread or in Part 5.
You seem to be fairly dissastisfied with your urologist in that he repeatedly failed to identify your PVR. PVR is the very first thing my urologist looked at and kept reviewing. Also Avodart does not help flow, it reduces the prostate over the long term. But flomax (or the generic tamsulosin) usually improves flow within a couple of days. It's a mystery why he didn't prescribe something that would help you with your flow and relax the bladder and prostate. It sounds like you are not happy with your urologist, so maybe it's time to switch doctors. If you liked the urologist in the hospital, you could start with him, or look online for highly rated urologists, or find one that specifically does the type of procedure you want. Even if you decide on the Mayo clinic for the holep, you still would want a local urologist for UTI's or prostatitis, and just to keep an eye on things with a check up and ultrasound and PSA every 6 months.
I took cipro for UTI's a few times a year for several years. The last time I took it I got tendonitis and my foot blew up and looked like a raw meat loaf for a week or so. It is on the label for cipro that this can happen, and it happened to me and it did to you too.
From what I have read on forums like this one, the "button turp" (not the traditional turp), and the holep get the best reviews. As long as you are not happy with your urpo, why not look for one that offers one of those options?
If your uro only did 10 holeps, you wouldn't want him to "practice" on you anyway.
Prior to my PVP greenlight laser my doctor was never able to identify prostatitis with urine tests. However while he was doing the PVP he found many puss filled abcesses inside the prostate as he vaporised tissue. My prostate was 120g. + and he removed about 70g. with the PVP.
I'm 68 and I had a PVP laser about 3 years ago. At that time I had taken flomax for several months but it stopped working for me. I had a PVR of about 400cc and I would get up in retention in the middle of the night with kidney pains, and need a drink of whiskey and a 10 minute walk to be able to urinate. I had no choice but to have a procedure done. I ultimately needed a bladder neck resection and removal of bladder stones a year ago, to finish the job. As the result of about 15 or 20 years of bph my uro said my bladder became over muscled, and my total bladder capacity before I have to go badly is only about 300cc, and before I feel the need to go is only about 200cc. Therefore I only pee about 200cc at a time and I get up 2 to 6 times a night on good nights. I keep a disposable 1 liter urinal by my bed, and can get up in the dark, use the urinal, snap the cover back on and get back to sleep in just a minute or so. about two times a week I go all night long and void 2-1/2 to 3-1/2 liters. I'm presently going to doctors to try to figure that out. But it's not a blocked prostate or bladder as my pvr is only 7cc. If you have a procedure, get off of any aspirin or blood thinners or you will be a candidate for a hematuria of the prostate or bladder neck (which I also had).
Bob

karnal said...
i am new to the forum and need some advice from this very knowledgable group i would welcome any suggestions
here is my short history
Recent History of my BPH issues :--
I have BHP for over 13 years and am 78 years but in good health
My urologist diagnosed infection in the semen (prostatitis) on December 10 without culture of urine or semen ,he did not check the urine retention (during the last 5 visits) and just Put me on ciprox even though my urine culture was negative ; after taking cipro for 12 days I started having nerve pain in the lower right leg and tendinitis in the left leg and he substituted the antibiotic to Sulfamethoxazole and trimethoprim combination I don’t think it took care of the infection either but leaving me in a situation that I still can barely walk more than a couple hundred yards without nerve pain

right peroneal nerve issue
I had a decompression of the right peroneal nerve 20 months ago which was successful the strength was back and nerve was almost healed and the pain was very low ; the above incident increased the nerve pain
New incidents
I was admitted in hospital on sixth of February as I had fever of 103.3 and shakes on 4 February and went to the emergency room where they gave me antibiotic and released me on the fifth morning. However I was called back to do further checking and readmitted to the hospital ,due to suspected blood infection ;initially they thought it was UTI but the urine culture was negative ;initially blood culture did not show any infection but they persisted in culturing the blood again the attached document shows a rare bacteria and I was on IV antibiotic for 3 weeks till March 5th

BPH issues before and in Hospital

I was urinating only 200 ML at a time every hr for past 75 days i.e. all of Dec,January and early FEB before the catheter was inserted and and started dribbling as well
During the stay in the hospital I asked for urology examination and the urologist who found 800 ml of urine retention and next day Feb 8th a catheter was inserted and 1000 ml of retention was removed , my bladder was thick and enlarged and blood was coming for 3 days before the urine cleared . The urologist removed the catheter twice during last 30 days for 5 hrs but I was not able to urinate .I still have a catheter and has been advised surgery before any removal again. My prostrate was 69gr in 2011 and 77 Gr in aug 2014. Before hospitalization I was getting up 6 times a night and felt I had a large retention , unfortunately for last 4 years my urologist did not ever do any ultra sound to check the urine retention.
Avodart prescribed by him was not effective and I discontinued it .
I opted for Urolift even though it may not last more than 4 years and gives me time to wait for better thing to come along like PAE or better still Gat Goren(procedure) when available again???
and saw a urologist last week he pronounced
my prostate at 70+ gram is too large is not fit for urolift
2. My urethra is tight shut and will be difficult to open it up with Urolift without 5-6 stents ( which he doe not recommend )
3. he wants to do immediate Surgery either PVP or Turp: he also claims he did 10 odd Holep procedures and gave it up and did not think much of it. (kind of doubtful suspect statement )
I have an appointment with Mayo doc in Phoenix for holet and am actively searching for urolift surgeon in Los angeles area
any comments and advice will be welcome
I donot think I can operate my thriving business in renewable energy with catheter all the time till I find better alternative . i cancelled my turp surgery set up for tomorrow in case i am not suitable for urolift
thanks guys
Karnal

Post Edited (Bob_NJ) : 3/17/2015 10:44:51 PM (GMT-6)

>>> Therefore I only pee about 200cc at a time and I get up 2 to 6 times a night on good nights<<<

Bob: 200cc at a time is not so bad according to what I read. But as much as 6 times a night is a lot of urine output. The most I can void at any one time is 7oz and that is infrequent.

"Normal fluid intake is between 1500-2000 cc's (50-70 oz.) per day, which should produce 1200-1500 cc's (40-50 oz.) of urine output. The normal bladder capacity before you feel any sensation of urge is about 300 cc's (10 oz.). Normal voiding volumes are 210-300 cc's (7-10 oz.) with the first morning voiding usually being the largest at 400-500 cc's. Your Voiding Diary record will have indicated if any modification is required in the volume or type of fluids you drink."

Martin Victor. On 11th March you posted the following link. http://sperlingprostatecenter.com/prostate-cancer-detection/

As you know, I am somewhat suspicious of 'information' on the Internet. So many people hoping to profit from the fears of others so I did a search of "3T Multiparametric MRI – Blue Laser™'.

The following link looks genuine and holds up great expectations for diagnosing actual cancer in the prostate non-invasively.

http://www.cancernetwork.com/prostate-cancer/multiparametric-mri-standardizations-needed

Part of the article: The potential role of prostate MRI has in recent years expanded significantly, and there is great hope that mpMRI can help address two major problems encountered when treating prostate cancer: overtreatment and understaging. Prostate-specific antigen (PSA) level, the currently used screening tool for prostate cancer, is nonspecific and often leads to prostate biopsy. Despite the fact that transrectal ultrasound (TRUS)-guided biopsy routinely misses and understages cancers, many patients are still unnecessarily treated for identified indolent cancers that will not kill them.

The goal of a multiparametric approach to prostate MRI is to increase the accuracy of the identification of tumors within the prostate. Many recent publications have confirmed that a multiparameter approach achieves this goal,[1-6] although with sensitivities ranging from 49% to 95%. The identification by mpMRI of tissue foci within the prostate suspicious for neoplasm has many potential benefits: it can identify lesions in patients with elevated PSA levels but negative prior TRUS biopsy, guide biopsies in patients who are candidates for active surveillance, provide serial information on the size of tumors under active surveillance, provide reassurance that low-risk patients do not harbor significant disease, and identify lesions for localized therapy. These uses should help us accurately stage and follow disease and reduce the incidence of unnecessary whole-gland treatment.

But it is worth going to the link to read the whole thing through. My conclusion, having read it through, is that anyone preparing for a prostate biopsy should consider this route and sadly, I have found no indication of expenses involved or where would be one's nearest place where it could be performed.

Friends
Thanks for the help
I have an update of my visit yesterday with a young progressive urologist
he needed cystoscopy and qualified me for urolift after the first urologist who did not want to do urolift; he was not sure if my prior urologist was experienced in urolift; this is an important decision for me hence I just wanted a second opinion ; he agreed that my prostate was large but suitable for Urolift he wants to do office procedure in LA on 26 March however I will need six pins he also advised me not to cancel my surgery in Phoenix for Holep at Mayo Clinic on 6 April
I gave him the paper from Israeli doctors he read it cover to cover and thought it had merit however it is a job of the radiologists according to him I requested that he do a sonogram of my testes he found only mild grade 1 Varicocele and wasn't sure if it was causing my BPH
he advised that you would know within a week if Urolift was working and if not then I can get my Holep surgery done
my nephew is a professor of urology in medical school Delhi and he agrees with him I will appreciate any comments from the knowledgeable people on this forum as I am in you entrant and need all the help I can get should I send an email to the Israeli doctors
thanks

Hi Dave,
Karnal says he has had a catheter in for 30 days and cannot urinate without it. The GG is a long term solution, but what are the chances of it allowing him to void without a cath?
Bob

Chicago Dave said...
Karnal,

Congratulations on finding a urologist open-minded enough to read Dr. Gat's paper. I didn't think such people existed. Both of the urologists I met curtly dismissed him and refused to even look at the papers.

You have nothing to lose by contacting Dr. Gat's office and describing your symptoms and history, and mentioning that varicocele was diagnosed and that you're intending a Urolift soon.

So in the spirit of Caveat Emptor (Let the Buyer be Aware) I wanted to reiterate my Urolift experience and research about PAE.
I had a lot of urinary retention 6-700 ml prior to Urolift and approx 85 gm prostate no median lobe.The post op 3-4 day recovery was bad but eventually my kidney functions began to show impairment (creatinine 2.2) leading to 1 time a day cathing. Finally a UTI and acute urinary retention and catching 3 times a day.Bladder then stopped working. So from this harmless non invasive Urolift I almost lost my kidney function and did lose my bladder function. I down to catching once a day and taking Flomax and finsterade and my bladder is slowly coming back….ironically these are the drugs I was trying to avoid hence the Urolift.
On the PAE research (Not wanting to make a similar mistake):
Extremely important to have a really experienced radiologist since the connections in the veins and arteries are complex in the urogentital area. A mistake and the acrylic microsphere balls can migrate to occlude another organ. Apparently bladders etc have been affected. Doesn't happen frequently but it does happen rarely.
Amount of radiation equivalent to 3-400 chest x rays at one time leading to a 1 in 2000 risk of a tumor. I was advised it might take 20 years or more to develope a tumor.
I wonder about the wisdom of leaving a bit of your artery filled with acrylic/gelatin plastic balls. Personally I don't even like my food in plastic and prefer glass.That said, they haven't seemed to cause problems when used in women with fibroid tumors in hundreds of thousands of uses.
All that said I may eventually go for the PAE but I wanted to share the risks with you guys once I identified them as I saw it.

Good find, Martin. If I were in Karnal's shoes, I'd be tempted to skip the Urolift and go directly to PAE (assuming that GG isn't appropriate, which is quite possibly the case). It will be interesting to see what Karnal decides.

To complete my thoughts about the possible risks of the PAE since everyone seems extremely positive without mentioning the risks or the possible downsides.

PAE CAVEAT EMPTOR 2 :

(1)I forgot to mention what is being called "PAE Syndrome". Most likely as a combination of the effects of the contrast dyes necessary for mapping the veins and arteries and the prostate tissue die off in the first few days there's a fever, chills and feeling horrible.
Previously mentioned:
(2) Fairly large dose of radiation
(3) Possible migration of embosphere acrylic balls and necrosis of other areas other than prostate
(4) Possible downside to filling arteries/veins with plastic/gelatin material.
(5) Seems to work in only about 60% of the time from actual responses of subjects.
(6) Long term effect is not guaranteed since the body tries to create new blood vessels to feed prostate. PAE may need to be repeated.

All that said, it's still probably got the best risk/reward profile of all the procedures available. I may go for it in the future. Number (4) is my own concern and I haven't seen research showing side effects. It's my own pet peeve that I suspect most of us are experiencing an overabundant exposure to plastics. (It really was the future Mrs Robinson)