How to Know in Advance if your BPH Surgery or Procedure Will Work!
Posted , 14 users are following.
It used to be pretty much just TURP, but now there are lots of way to fix BPH, which more coming on board each day. A partial list includes: Green Light, HOLEP, Urolift, REZUM, iTind, PAE and FLA.
But if you read the literature, or spend time here, what you will find is that all of these procedures can produce great results or not so great results. And that is often with the same doctor.
So, in broad strokes, in many cases it's not the procedure or the doctor that determines whether a surgery or procedure will work, but the condition of your bladder/urinary system going into the procedure.
Unfortunately, many doctors operate first and then make excuses when the operation or procedure fails. "Well, the operation WAS a success, but you really can't expect much with such a weak bladder".
Very nice piece of information to know, after the fact!!!
The more knowlegeable and ethical doctors will test the system first to get a better idea of outcome before the surgery or procedure. So far, urodyamic testing is the gold standard here, with video urodynamics the best of the best. Still, urodynamics has limitations, and is not the genie in the bottle.
Recently, a few of us in the self cathing group, were playing around with a way to use our catheters to open up the urethra in the way a stent might. The idea was to simulate with the catheter what a prostate reduction surgery often does, ie take the pressure off of the urethra. Problem is that a catheter is not really a stent because the catheter itself becomes part of the obstruction.
This lead me to think, what we really needed was a trial by stent. In other words, simulate a prostate reduction surgery or procedure with a temporary stent to see if indeed its worth doing the surgery or procedure.
Turns out, this has been thought of before. Problem is, as with many good idea, not much progress or effort has been put it into the idea since 2011.
From the 2011 paper:
"An interesting application of the biodegradable stent is to simulate the situation after the TURP in patients with a combination of severe BOO and severe overactive bladder. "
The cynic in me says not to expect too much in the way of more progress and funding in this area. First, these projects need funding and most of the funding these days is coming more from the equiptment and procedure manufacturers (think Urolift and REZUM) and not from stent manufacturers for a diagnostic use. And second, a trial by stent would be added time and work for the urologist, when in fact many are really chomping at the bits to either cut, slice, dice, burn, melt or lazer away your prostate.
However, on an individual basis, this doesn't mean someone motivated to find out before a surgery, if that surgery will actually work, couldn't hook up with a creative and enlightened urologist and do the trial by stent on their own. Not to say that may be easy, and in fact, if one does find such a urologist, please private message me their name!
I will post links to the only two studies I could find on this in my next message. They probably won't show up for a day or two until they come out of moderation.
Jim
3 likes, 138 replies
johnmm45 jimjames
Posted
A valid question in light of the potential downsides and the variable outcomes, but a more practical one relating to the current availability of BPH treatments in the UK would be where and how you could plug in to access professional expertise and support to enable you to make an informed choice in the first place, given actual availability of the treatment.
With no NHS availability and consequent low GP awareness, it's very much down to a personal campaign of trying to identify private Urology consultants, clinical trials, and learning from the expertise and experience of contributors on sites like this.
As far as I can tell, of the least invasive focal procedures, there are only two UK centres offering PAE and on a private self pay basis only, and access to FLA necessitates self funded treatment in the US.
It's great to be able to benefit from sites such as this and others like Prostate UK, and whilst it's understandable that they want to preclude any promotion of particular specialist or treatment type, it's somewhat frustrating that there is simultaneously no obvious directory of providers readily available as part of the support resources on offer.
jimjames johnmm45
Posted
I think a registry like you propose is a good step forward, but there are limitations in predicting outcomes even with the best doctors which is why there should be more focus and research in that area.
Jim
johnmm45 jimjames
Posted
I agree with you about the need for more research into the (pre-operational) efficacy of BPH procedures, particulary in relation to non target embolisation (PAE) where the potential random outcomes of the procedure virtually demand it. The merits of the procedure are certainly questionable, for me personally at any rate, if, as Neil3149 describes, the procedure can be a technical success in reducing prostate volume by 33%, but a clinical failure by delivering no change in IPSS score when the reduction in prostate mass has not been accompanied by any pressure reduction on the urethra.
Certainly makes any decision to proceed with PAE a bit of a punt as the current state of play stands.
Conversely, whilst FLA offers a targeted approach to localised tissue removal around the urethra, and presumed immediate relief of symptoms, it would appear that the issue of continued prostate growth may make this only a temporary solution (timeframe unspecified) before having to undergo a rebore.
Perhaps there is a case for these procedures (and accompanying research) being used in tandem with the role of PAE being to discourage further prostate growth following and in support of an initial FLA.
Confused consumer.
Howard31850 johnmm45
Posted
Hi John,
In regard to what you write here you might want to check out my thread on a "Gat-Goren" like procedure I will be undergoing next week in the hope of curing my BPH. Take care. Neil
https://patient.info/forums/discuss/-gat-goren-like-procedure-to-cure-bph-my-diary-586317?page=0&utm_source=forum&utm_campaign=comment-notification&utm_medium=email#2654368
jimjames johnmm45
Posted
John,
Some good thinking.
But going back to the "trial by stent", this particular diagnostic procedure, would in theory be a more accurate procedure for predicting success for more traditional prostate reduction procedures like TURP, GL, HOLEP and even FLA. That's because in those cases the prostatic obstruction is removed allowing the urethral canal to open. In the case of PAE, as you stated, hard to predict whether or not the reduction will open the canal.
Not to say trial by stent wouldn't be useful with PAE. In fact it could predict a failure, but it couldn't necessarily predict a success.
Time will tell how permanent FLA is as a procedure, but my understanding is that because of it's focal nature, no two FLA's are exactly alike.
Jim
johnmm45 Howard31850
Posted
Hi Neil,
I have been following that thread and read your postings with interest, particularly the one about the chemical influence of how BPH actually develops.
I like your line of thinking and hope your back door way of closing the back door via your Detroit 'Gat Goren' procedure achieves for you what your PAE failed to deliver.
Really hope the procedure goes well.
Personally, I don't think varicoceles are a problem on which I could engineer a 'Gat Goren' type solution in the same vein - excuse the pun - that you are, but I do understand the case that you are making for what these particular spermetic veins are contributing to prostate enlargement, and what they would continue to contribute even after undergoing a PAE. Seems there could be a valid argument for not doing one without concomitantly or sequentially doing the other.
Whilst my BPH may be an inconvenience and not as severe as others, but my IPSS score is a relatively high 28, I am personally not in favour of a pharmaceutical route to trying to ameliorate my symptoms. The low void volume, poor flow rate and increasing daily urgency and nocturia make it more difficult to continue to be passive, and recent national press coverage about UK PAE trials in UHS (Southampton) led me to look at an interventional solution.
Unfortunately, I now find myself more confused about how to proceed. If my preference is for FLA, then I have to look to the US for a solution, but prior to that I need to get off first base and understand the proper nature of my BPH.
Best wishes for your trip to Detroit.
johnmm45 jimjames
Posted
Hi Jim,
Point accepted about predicting the outcome of the more traditional procedures, and that by definition you cannot necessarily expect non targeted PAE to open the canal - luck of the draw and on this basis would you/one commit to this procedure??
Suppose that ultimately depends on the severity of the individual condition and what options are open to you. Seems early days for total US/UK/Europe/Australia patient volumes and that we may still be some way off this becoming a standard procedure, certainly it hasn't got off the ground yet here in the UK.
Again I agree that it is also early days about understanding how permanent a procedure FLA is - again would be interested in understanding current patient volumes. And, if no two FLA's are exactly alike, unlike PAE all the outcomes will be in terms of producing a customised core.
Stick or twist??
Howard31850 johnmm45
Posted
Hi John - thanks for your good wishes. It helps a lot.
If you ever get to "understand the proper nature of my BPH" you will probably get a Nobel Prize. Right now there are as many theories as urologists/IRs and they are all guessing - and most are getting rich in the process.
Have you had a chance to read the technical papers I mentioned in my thread? They provide a good rationale and good clinical data for the varicocele embolization of GG. If you can't get them then just PM me your email address and I will send them to you. They give a good education of Gat-Goren.
With your high IPSS score and symptoms it is really important to get an ultrasound of your bladder and kidneys and a cystoscopy too to make sure there are no problems developing.
Do you do CIC? If not I would so highly recommend it while you look at other options. And you have the world's best expert here to guide you - jimjames. He taught me every detail of how to proceed and I am so grateful to him.
Take care
Neil
jimjames johnmm45
Posted
Jim
johnmm45 Howard31850
Posted
Hi Neil,
Haha - a man with a sense of humour.
First pass, I thought the Nobel Prize was on offer for understanding the nature of BPH itself, got to be more complicated than your individual case surely!!
And certainly looks like they'd be getting richer off me too if and when I make any decisions about intervention, as I will have to self fund and travel to the US for FLA, my preferred choice as things stand.
I have some initial blood/urine tests set for May 02. I very much appreciate your advice about ultrasound and a cystoscopy and will be discussing both with my GP when the test results are available.
Think I've actually got the world's two best experts here, but currently my problem is needing to void too frequently rather than having difficulty voiding, and would much prefer to subcontract the work if catheterisation became a necessity - don't think I could confront a self management process!!
What day you scheduled for your faux GG in Detroit next week. Did I read previously that you are set for May 02 too?
Regards and again best wishes for next week.
johnmm45 jimjames
Posted
Is there any good news??
You are right of course. And at the moment I am investigating potential solutions when I haven't even had my own problem properly defined professionally.
Not that that is necessarily wrong, I can't see much benefit approaching a GP without the required knowledge base if they have no knowledge of the subject matter, and while mine is a good doctor, he doesn't know PAE or FLA as a BPH treatment option from DCF or IRR - actually as Neil suggests, the profession may well be familiar with the latter (financial) acronyms.
Equally, without being an informed consumer, the way the NHS system works here, I'm just as likely to be passed on to the local Consultant Urologist whose first line solution will be to want to start cutting, slicing and dicing, when I want to properly understand the full range of options and where the specialist expertise really resides.
Follow the money.
jimjames johnmm45
Posted
John,
Maybe I missed it, but what tests have you had? Do you know your post void residual (PVR)? Have you had a kidney/bladder ultrasound? Cystoscopy? Urodynamic study? TRUS to measure size of prostate? IPSS score (you can do it yourself, just google "IPSS Score" and take the online test).
I ask because the symptons you list may not even be bph/luts. Could just as easily be overactive bladder which requires a different approach.
Doc all too frequently lump all luts symptons together, diagnose BPH and then cut, burn or staple or burn it away. A proper diagnose is the first step and unfortunately the one step often hurried.
Jim
Howard31850 johnmm45
Posted
Also I just want to ditto what jimjames wrote here to get checked for over active bladder (OAB). Your symptoms are consistent with that problem and require a much different treatment, and a much easier one than BPH.
Neil
johnmm45 jimjames
Posted
Hello Jim,
I certainly do not intend to hurry the first step and don't intend to make any decisions without first getting a proper diagnosis. As I said earlier, I may currently be at the point where I'm looking for a solution - or rather at potential solutions - without having actually defined/redefined my problem, and in which context I appreciate your comments about OAB.
I had the gamut of urodynamic tests in my early 60s, when my BPH was supposedly diagnosed, possibly by default, and have passively put up with low flow/low volume and increased nocturia since. The recent worsening of my symptoms and the national press coverage of PAE earlier in the year have put me back in front of my GP.
Whilst having the occasional proctological visit over the years, I have never had any knowledge of my actual prostate size or undertaken any of the tests you have listed. This is ground I now want to cover with my GP following the results of initial blood/PSA and urine tests scheduled for next week.
Not so sure the NHS will be welcoming me with open arms to proffer this whole raft of diagnostics, the amount of rationing and queuing for elective procedures is making the service look third grade, but I intend to cover some ground this way first.
Chicken and egg.
johnmm45 Howard31850
Posted
Have a good trip to Detroit ahead of your GG.
jimjames johnmm45
Posted
Don't know how it works in the UK, but these tests in the U.S. are most often ordered and interpreted by urologists. PVR and Bladder/Kidney Ultrasound and Cystoscopy are pretty standard. Urodynamics which among other things measure's bladder pressure should be.
Once you take these tests it should be more apparent if it's primarily BPH/LUTS or OAB. Of course it could be a combination, but I would think that you would treat OAB first and then see if what you're left with merits any sort of treatment. If you treat BPH/LUTS first, regardless of the procedure, you may end up exactly where you are now.
In fact, regardless of what you have, and how you're treated, your Nocturia may remain. It's pretty common as we get older and can be caused by issues that have nothing to do with the prostate at all.
Jim
Howard31850 johnmm45
Posted
Thanks John for your good wishes. I wish you well too. It's not much fun being a lab rat!