MY HORRIBLE PAE EXPERIENCE
Posted , 6 users are following.
I made a PAE one and half year ago.
First 30 days were horrible and very painful. Excruciating pain when begin urinating (no medicine was able to subside it), blood in urine and feces during 30 days.
Sometimes I urinated on myself (flow was released) and I passed a big chunk of something
like a piece of my prostate and which cause me great horror.
After 60 days I began to urinate very well (like a young, I´m 67) with strong and great volume.
After one year flow diminished a lot, but I´m stiill able to pass 200ml / 250ml more slowly.
Today I drink 1,5 lt of water until 1p.m to avoid urinate by night.
Worst symptom right now is great difficult in begin urinating. Don´t want to use alpha-blockers.
Prostate weight before: 120 and right now 95.
My doc said "new arteries have grown but no worries, we can make a second PAE".
I learn from a Dr. Pisco article that some arteries must be isolated during PAE so you won´t
feel pain after it (penile and proximal bladder arteries). Is that true?
I would like to ask you if you can guide me to an article which shows me success rate of a
second PAE and which strategies you use to fight pain after that surgery.
How can I protect my only one kidney from contrast dye during MRIs? I read that NAC plus
vit C just before the test can do the job. Any clinical trials proving it?
0 likes, 31 replies
kenneth1955 lrp1
Posted
dl0808 lrp1
Posted
Sorry to hear that up first PAE result did not last as long as u had wanted. I don't know the answer to ur question.
just curious that how long would u expect the second PAE to last. Logically, it seems there is no reason to expect it should last longer than the first one.
if the second PAE will last another year, would u go for it?
just wondering if u know a normal prostrate is 20-25g and 80g is considered a large prostrate. 95g is quite a large prostate.
also curious if RE is something u definitely couldn't live with.
lrp1 dl0808
Posted
I really don´t know how much time a second PAE will last so I can´t answer that question. I´m just looking for an article showing clinical trials about success rates of a second PAE.
Pardon me, but what is RE?
dl0808 lrp1
Posted
dl0808
Posted
Plse ignore this post. Just a test.
bmj?com/content/361/bmj?k2338/rapid-responses
(In the above link, plse replace the "?" Sign by "." that is a period.)
dl0808 lrp1
Posted
Below is a review of a paper (2018) reporting the the results of a PAE clinical trial. Not what u wanted but may contain helpful information.
The purpose of the review is: "....the major attraction of PAE, at least in the public’s eyes, is its depiction as a minimally invasive procedure with less adverse events (AEs). Preservation of ejaculatory function is particularly promoted (4) . A look beyond the headlines is required to examine this image."
Source:
bmj?com/content/361/bmj?k2338/rapid-responses
(In the above link, plse replace the "?" sign by "." that is a period.)
Comparing PAE to TURP. A critical view. Re: Comparison of prostatic artery embolisation (PAE) versus transurethral resection of the prostate (TURP) for benign prostatic hyperplasia: randomised, open label, non-inferiority trial
[Critical information from this review is on PAE ejaculation dysfunction:
"The incidence of 56% of ejaculatory dysfunction in the PAE group is rather surprising (1) . Its mechanism is uncertain. By comparison, the incidence of ejaculatory dysfunction in 84% of patients after TURP is within the expected for this procedure, its mechanism is understood, and it is an essential item on the consent form for this procedure. It therefore follows that ejaculatory dysfunction should be declared as a significant possible AE after PAE rather than the current position of promoting it as an ejaculation-saving procedure! (4)"]
This article (1) is a valuable contribution to our knowledge of the value of PAE (prostatic artery embolization) in the treatment of patients with BPH-LUTs. The paper’s special value lies in the fact that it reports on the results of a RCT, thus providing a high level of evidence.
The trial results show that, at the very short follow up period of 12 weeks, PAE reduces LUTs, as measured by IPSS, but to a lesser degree than TURP, and with unproven non-inferiority. Furthermore, one has to take into consideration that, by comparison, an observation period of 12 weeks is likely to disadvantages TURP far more than PAE. The ROPE study had shown that the improvement in the IPSS is at its best at 3 month for PAE. On the other hand, for TURP patients the improvement in symptoms continues up till the end of observation period of 12 months (2).
From the functional point of view the superiority of TURP is beyond any doubt in terms of improving Qmax, PVR and Pdet at Qmax.
Since the trial did not control for any of the relevant outcomes, one can simply compare the % change in baseline measurements. The results show that the % reduction in IPSS, at 12 weeks, is approximately 48% for PAE Vs. 61% for TURP. It is worthwhile remembering that a1-blockers reduce IPSS by approximately 30-40% (3). The improvement in the Qmax is approximately 74% Vs. 211%, the reduction of PVR is 58% Vs. 85%, and the reduction of Pdet at Q max is 21% Vs 54% for PAE Vs TURP, respectively.
When compared to the current standard surgical treatment, namely TURP, the major attraction of PAE, at least in the public’s eyes, is its depiction as a minimally invasive procedure with less adverse events (AEs). Preservation of ejaculatory function is particularly promoted (4) .
A look beyond the headlines is required to examine this image.
In relation to adverse events the emphasis in the paper, particularly in the abstract, is on the total number of AEs rather than its significance. The really significant AEs of treatment of this condition are not the irritation, pain, discomfort, UTI, or mild haeamturia, which constitute the main bulk of the number of AEs in this study, but the serious ones as well as the long term ones. The paper did not provide detailed information regarding serious AEs to allow valid judgment, and with the very short term follow up here the long term results are unknown. However, other longer-term studies showed more concern regarding log term results of PAE, in terms of reoperation rates, etc. (2,5) . When discussing AEs context is important.
The incidence of 56% of ejaculatory dysfunction in the PAE group is rather surprising (1) . Its mechanism is uncertain. By comparison, the incidence of ejaculatory dysfunction in 84% of patients after TURP is within the expected for this procedure, its mechanism is understood, and it is an essential item on the consent form for this procedure. It therefore follows that ejaculatory dysfunction should be declared as a significant possible AE after PAE rather than the current position of promoting it as an ejaculation-saving procedure! (4)
There are also other remarks to be made about this trial.
BPH- LUTs is a complex mixture of pathophysiology, symptoms and signs (physical and investigation results). The authors chose to give symptoms the prime importance. Although, ultimately, the objective is to relieve symptoms, it is not the only objective. One will have a good reason to believe that improving functional outcomes are just as important. They are likely to result in a more durable symptomatic improvement.
The authors use the term “refractory BPH-LUTs” to describe the participants. This is not entirely accurate. Approximately 15% of patients had not even tried medical treatment.
The exclusion criteria demonstrate the limitations of PAE. The exclusion list includes many common comorbidities, e.g. Atherosclerosis, as well as common findings in patients with BPH-LUTs e.g. eGFR < 60 ml/n
In summary, the results of this trial are unlikely to change the final conclusion of the highest level of evidence, a recent systematic review and meta-analysis on the subject (5). That had concluded “ Growing evidence supports the efficacy and safety of PAE in the treatment of BPH. However, this systematic review with meta-analysis and meta- regression shows that PAE should still be considered an experimental treatment modality. In terms of efficacy it is still inferior to standard treatment methods. Also, the persistence of improvements cannot be guaranteed.”
The authors of this paper (1) promised further follow-up extending to 5 years, and that will be another major contribution to current knowledge.
It is noteworthy that NICE’s decision to “support the use of this procedure” is based not on its equivalence to TURP, but on the basis of “the potential benefits of prostate artery embolization compared with surgery include fewer complications, avoiding a general anaesthetic and it may be done as a day case procedure” (6) . This study should not be seen as moving the agenda any further to make PAE a competitive to TURP on efficacy grounds.
The gold standard, currently TURP, is not perfect and we should continue to search for improvements. PAE will find its place. Within current evidence, it is not a replacement for TURP. It might be used as a stop-gap between medical treatment and TURP (2,7) and that will have financial as well clinical consequences; or it might be of particular value for patients in whom bleeding is the main problem, whether current and unmanageable by other means, or potential one with particular serious consequences. Time will tell.
Meanwhile, we should keep in mind the consequences of previous too enthusiastic rush to implement new and exciting treatments for BPH-LUTs. If we do, we have learnt from history that we learn nothing from history (8).
References:
1- Abt D, Hechelhammer L, Müllhaupt G, etal . Prostatic artery embolisation versus transurethral resection of the prostate for benign prostatic hyperplasia: randomised, open label, non-inferiority trial. BMJ 2018;361:k2270.
2- Ray AF, Powell J, Speakman MJ, et al. The UK ROPE Study: efficacy and safety of prostate artery embolisation for benign prostatic hyperplasia. An observational study and propensity matched comparison with transurethral resection of the prostate. BJU Int 2018. 10.1111/bju.14249. 29645352
[There are more references.]
Competing interests: Practicing Urologist.
j12080 lrp1
Posted
You basically cut off the blood supply and hope. Hope that the death of tissue from the lack of blood supply will reduce the exact location that is cause the problem. I have met with both Bagla and Isaacson in doing research to choose a solution and neither explain this to me and both seemed some what evasive in the discussion of this when I brought it up.
My issues were not just flow from a pinching of the urethra, I had a large median lobe situation that pushed up into the bladder causing some retention. It was a lot to hope for that a PAE caused blood reduction that was random would remove the locations and the amount of tissue involved in my dilemma.
This is sad and disappointing to hear for the men who have not found relief yet.
Good luck
lrp1 j12080
Posted
There´s another thing I forgot. Since my PAE I developed Erectile Disfunction and my doctor said that it was caused by low pressure on penis ???? and that when my prostate was 200ml I have better erections because I have high pressure on penis. No matter I try to figure what was he said to me I didn´t understand.
kenneth1955 lrp1
Posted
gene97713 lrp1
Posted
Dear Doctor,
You are expressing the view of a typical practicing Urologist, who is used to perform TURP or open abdomen, or suprapubic resection of the prostate in case of BPH or PC. You experience with PAE is probably less than mine because I underwent a totally successful PAE 6 month ago and experienced a very stable and substantial improvements in my IPSS score and LUT symptoms. Frequent UTI infections gone, nocturne urination gone. I don’t have frequent urges and even my bladder, which was diagnosed long ago with wall thickening, severe neck obstruction, and diverticula due to a couple of severe obstruction episodes, which resulted in Foley catheterization for a week or longer, start to function close to normal. I can keep periods between visiting bathroom up to 5 hours vs 1 hour before PAE.
I’m myself a teaching Professor and have access to all recent papers and reviews. I’ve read the same recent reviews on PAE results and comparative statistics. Yes, there are some complications when PAE was performed by not. A very trained Interventional Radiologist Otherwise It’s a very safe a relatively mild minimal invasive procedure vs TURP, which has 30% complications of incontinence an permanent ED. That percentage grows when the size pf the prostate is above 80g and age above 60. BTW, I am 71 and had my prostate was 138 g when the Uro from my HMO scheduled me for the TURP, which is by itself a malpractice, but many URO do it for the sake of money.
How many of TURP patients age 71 do you know , who had similar improvement in 30 days with any bleeding, wearing Foley catheter and a bag on their leg for at least two weeks. Radical resection of prostate, recommended in such cases has even more complications and requires a week stay in hospital.
One of our former Presidents, according to the anecdotal data, underwent 3 TURP procedures over his lifetime. According to the newspaper Prime minister Netanyahu had chosen PAE to treat his BPH. Let me know that here that PAE was proposed and scientifically justified in Israel by tree doctors who developed a hydraulic theory of BPH and explained why prostate experiences such dramatic growth in some patients.
Yes, the results are not that dramatic as1 year after a very successful TURP. I can hardly believe, though, that TURP on average leads to 220% improvement in rate flow. Maximum rate flow of an adult healthy man in his 40th is around 20 cc/sec with average amount of urine of 300 cc. Let’s assume that this rate is achieved after TURP (that is unthinkable for a 65 -year old bladder). That will lead us to. The assumption that before TURP an average patient had only 6 cc/s, which is dismal for a prostate less than 80g.
Of course, I realize that my prostate is still around 80-90 g after PAE induced necrosis and shrinking. According to some recently published studies of post-PAE MRI, prostate continues to shrink up to 24 months after the procedure. The longest post-PAE time described in the literature is 4.5 years, when 75% of patients reported the substantial improvement in IPSS scores without any ED or RE.
The longer UROs like you will insist on inefficiency of and questionable benefits of PAE, the longer insurances and HMO with refuse to cover that innovative and much less invasive procedure that can return quality of life to many men after age 60. Yes, severe atherosclerosis of arteries and kidney failure are a limitation factor for PAE, but if you take into account the frequency of the poisoning by glycol used in TURP, which is nothing less than a barbarian method of shaving the prostate from inside by an old method that uses MW for blood coagulation like the one that is used for warts removal, bleeding in older patients with large prostate reaches 60% of cases.
In brief, your comment , is nothing more than propaganda against PAE, to keep TURP surgeons sacred cash cow safe. So much for the “gold standard”. In my view it should be eliminated long ago and some countries in Europe and Central America are doing it as we still arguing.
lrp1 gene97713
Posted
Please excuse me, you called me a Doctor, but I am not a doctor. I am a patient.
gene97713 lrp1
Posted
I'm sorry, that email was meant for dl0808. I clicked on a wrong reply button. I have sent a brief email with excuse. It's above. I think, though that you are not totally correct when explaining the idea of PAE as just a random success when the organ is shrunk. Neither TURP or HoLEP are much better than that but much more invasive and traumatic to the bladder and surrounding nerves and urethra. Moreover the modern way of targeted PAE allows to target specific areas in the prostate. Generally speaking the shrunk prostate should pressure the urethra and bladder neck much less than before and allow for the passage of urine. When I went for the procedure with Dr. Picel, he had 11 successes out of 12 patients. All with large prostate requiring open abdomen surgery or HoLEP. So, it's not so random after all.
Temporary ED and pain in pennis, bleeding during defecation is possible when wrong arteries were involved by mistake or accident. Except for pains in dying prostate I didn't experience any of these. The erection and orgasm is even better after PAE, but I have practically no semen. It was expected, as vasicules( semen storage) were shrunk as well. I don't plan to have children at 71. I doubt that TURP preserves the ejaculation function either. Most often it destroys the important nerves responsible for the erection and sphincters control causing incontinence and ED. Most certainly positive effects of PAE will last shorter than TURP and it involves huge dose of radiation, albeit increasing the probability of the cancers by 1-2% at that age.
lrp1 gene97713
Posted
Thanks gene97713,
If you don´t mind is it possible to find an article showing how to protect yourself from radiation duraing PAE procedure?
I have only one working kidney and would like to know too how to protect it when doin MRIs. I found some articles about NAC and vit C just before the test but I don´t know of any clinical trials about it.
dl0808 gene97713
Posted
I have offended u, my apology. But there are misunderstandings which I would like to clarify.
(A) I know close to nothing about PAE and TURP and also don't have any personal interest in them.
(B) About TURP, it was used as comparison in the original clinical trial paper (on which the review paper was written). if u have a chance to read many clinical trials about BPH surgeries, u might have known that TURP was the surgery with which all other new and different BPH surgeries were compared. The author of the review as well as the authors of the PAE clinical trial paper did not intend to promote TURP.
(C) If u had a chance to read the review as well as the original clinical PAE trial, u might have discovered that I just copied and pasted the review. The opinions are from the author who wrote the review. I obviously have no knowledge about both PAE and TURP and not qualified to make statements made in the review. Perhaps, I did not make it clear enough. If that is the case, I apologize again.
(D) I am not a urologist.
Your posts have new, useful and interesting information on PAE from a patient who had PAE, for example the sexual function after PAE. This info, I believe, is very useful for would be PAE patients. They are educational and I read them several times and learnt from them. I hope there could be more posts like yours with good details to expand our knowledge on PAE. I congratulate u that PAE has worked so well for u. But to be fair, that is just one person's experience. Readers could have a fuller picture of PAE by reading papers on PAE clinical trials.
U said, "I have practically no semen. It was expected, as vasicules( semen storage) were shrunk as well. I don't plan to have children at 71." This is precisely what the review trying to point out. The common understanding of PAE is that all sexual function will be preserved.
I am sorry again I offended u. There is truly unintended and a misunderstanding. What happened was that I got an email about this topic, it appeared to be a very interesting and was a topic I would like to know more. So I googled PAE and came across of this review of a 2018 PAE clinical trial paper. I checked the review against the original paper and found that the original paper did make the statements cited by the review. I formed the opinion that the review presents views very different than what I had read about PAE. I thought it would be good to share with forum members as I thought it would be good for members to know both positive and negative views so that the patient who is seeking treatment could make the best decision by knowing both the pros and cons.
I hope I did the right thing to present to the reader what I thought was (and still is) a good review of PAE. If u think there are comments in the review which u don't agree, it would be of value to members of this forum, if u have time and interest to correct them. If u come across a good review but of opposite opinion, I hope u could present it too so we will understand PAE more.
Not sure if u agree. I believe that it is to the best interest for a patient to know both the positive and negative view of the desired BPH technology he wants to be operated on and that the negative view is the most important. If he does not know such negative view exists and all he knows is the positive view, he may regret after having the surgery. I have come across many such posts. For example, RE, some patients were devastated and claimed their lives had been ruined after finding out they had RE and claimed that the doctor didn't tell them before the surgery.
gene97713 lrp1
Posted
Unfortunately you can't protect yourself from X-ray, except to find the best trained radiologist who man minimize the time of PerFeCted PAE. Radiologist technician should know better about toxicity of the Gadolinium ions used in MRI scans. I know they accumulate in brain, but not sure hoe toxic they are for your single kidney. Have serios doubts about Vitamin C and NAC. Just drinking more after MRI and flushing the system should help the safety. Again, I don't know to what extent you kidney is malfunctioning. Low GRFs <60 is a serious disqualifying factor for any PAE, when teh contrast injected into your arterial system is a part of the procedure. It can't be done without CAT contrast. I was borderline with mine GRF >80.
kenneth1955 dl0808
Posted
Dl and all the other men on this site. There are a lot of things I could say but there are some doctors that do not consider the male ejaculation a sexual function. That function is only suppose to be use for having kids. But I and some men feeling that it is a function and my orgasm and ejaculation go together. Like DL said when picking a procedure you have to do your pros and cons of it. The Urolift is the only one that does not cause any sexual side effects. When the other procedure are done you have to remember that the sperm and fluid comes from 2 section. You will have fluid coming from the seminal vessel and the prostate. The seminal vessel give you 70% and the prostate give you the other 30%. Now when you have a procedure done you have to think of what is is being destroyed. With most of the prostate If they cut out most of the prostate they can destroy the seminal vessel. So you will only have whatever is left of the prostate that will make up the fluid so you will not have much coming out. What ever you do think before you do anything and remember you are the one that will have to deal with any side effects. I think that is enough. I don't want to get started on this Have a good day all Ken
gene97713 kenneth1955
Posted
Ken,
you theory is not fully correct. Men can experience a strong orgasms with an ejaculation or even with RE. That's why doctors are not so concerned with RE. It's not a tragedy at all, unless you are going to act in porn movie or want to impress your partner. Some man with healthy prostate can experience unorgasmia. The process of sperm and semen creation is very complicated. BTW most men with large prostate and BPH don't have much of the ejaculate due to the enlarged prostate not being able to contract so energetically and ejaculate all the semen that bu itself naturally decreases with age after age 60 in most men.
RE in most cases of TURP, takein alpha-blockers, etc. is caused by the destruction of paralysis of one of the sphincters in the prostate (the one that leads to the bladder) and inability to divert the semen forward. There are some surgeries that preserve some important nerves and the sphincter itself but few doctors perform them. RE is a typical typical complication for most TURP patients and according to newer data for 25% of PAE.
Unless a man wants to have off springs at age after 60 which is complicated and not advisable for most men, RE shouldn't be a problem for a normal sexual life even with a much younger woman. ED is a different story, but PAE doesn't influence ED and many TURP procedure even improved erectile function. I know many friends who are post radical prostatectomy and preserved their erection and orgasmic ability. Obviously they can't ejaculate at all, even RE.
So, in my view the problem that you have mentioned is more psychological and to some extent artificial caused more by medical illiteracy. One can have an RE (most users of the alpha-blockers have it) and be perfectly happy with their sexual performance.
Main problem of TURP and other invasive methods is that it causes ED and incontinence in about 30% of patients. It can subside in 1-3 years, though.
When you partner will leave you 😃...
gene97713 dl0808
Posted
You didn't offend me. You forgotten to report that while most results of PAE and TURP at 12 weeks are indistinguishable, TURP patients experience incontinence at double rate of PAE patients. Th ereport was based on one radiologist experience with 108 patients. Who know what his training was...
kenneth1955 gene97713
Posted
Thank you very much for your reply. Yes my theory and it is also my opinion. That is also true what you said about some doctors. To them they do not care about your ejaculation and all they care about is to get you to pee better. If something else happen they trow you a pill and tell you that you don't need it anymore. But that is not up to them. I feel sorry for every man that went through a Turp or a laser surgery that was not told everything that can happen. But if you are aware of the side effects and can deal with them Then thats fine. But there are many men on here that don't want to give up there ejaculation. Why should we just to pee better. We should not have to give up on anything. You said you have friends that are please with there results. That is fine. I have friend that are not happen after being talked into there surgery. Some have giving up on sex. There partner leaves them. And some have even wish they were dead . I'm 63 and there is no way I am going to have any procedure that will take that away from me. Retro sucks Had it and never want it again. As for the feeling some men after a procedure well improve with there erections and there orgasm and there is no change. But you also have the men that the feeling is not there anymore. I have read and have been told that the orgasm is cut to a 1/3 in some men after a procedure. All I ask before you pick a procedure is to ask your doctor question and if he does not answer them get another doctor. A doctor that cares about all of you not just getting you to pee better. We are not animals where they castrate us and put us out in the pasture to live out our final days. Life is to short and when we get older and our kids are gone this is the time to have fun and enjoy all we can Have a great day Ken
hank1953 gene97713
Posted
GRF ? Did you mean GFR ? Does PAE cause problems for kidneys ? Thanks. Hank
gene97713 dl0808
Posted
I wrote a long reply to your post but system didn't accept it and dumped it before I was able to save it. So, I will repeat some points from my reply.
gene97713 hank1953
Posted
Yes, I meant GFR. PAE doesn't affect your kidneys but to be a good candidate for PAE you nedd to have GFR > 70, if I'm not mistaken. You will be given a lot of CT contrast (iodine type) which should be excreted by your kidneys. Not sure about one kidney but you should be fine with some precautions. There are a lot of disqualifying conditions for PAE procedure.
dl0808 gene97713
Posted
Thanks! U are very knowledgeable and well read. I have no doubt that readers will get insightful info on PAE from u.
For non resective techniques. i don't know anything about FLA and RESUM, but between urolift and PAE, I agree as u had said t hat urolift seems to be able to offer "no RE" better than PAE could.
This will make Ken happy, but as u had pointed out urolift is for prostate less than 80cc while PAE is for 'relatively large prostate'. this fact is not known to many readers and It is useful that u made it clear to them.