Chronic Prostatis and BPH, PAE, HOLEP
Posted , 12 users are following.
I have a 76cc prostate by 3T MRI. An ultrasound shows an enlarged median lobe pressing into bladder.
I have been suffering from chronic prostatis for 25 years which is my main complaint.
I have typical bph symptoms also but never so bad as to cause full retention.
I have been on antibiotics on and off the whole time which has completely screwed up my stomach.
In the end the antibiotics only take the edge off the pain a little bit but don't really help much.
I have taken the full gamet of supplements, etc.
I just recent consulted an IR doc at Yale about PAE. Between him and the resident they spent 2 hours
with me. The most impressive Dr visit I ever had in my life. In the end he said his patients have an
average of 170cc size prostate and the procedure works best for larger prostates.
He had a patient with a prostate similar in size to mine with concomitant chronic prostatitis whose
prostatitis symptoms did not improve much with the procedure. He wasn't too sure that it would help me.
He said PAE does not shrink the prostate much and kills cells mostly in the center of the prostate around the urethra which seems to be key to allowing people with retention to pee.
I also just recently consulted with Dr. Christopher DiBlasio of Bethpage, NY. He has been doing HOLEP for
9 years. He said that he has had a handful of patients with prostatitis that he treated with
HOLEP. He claims that the prostatitis patients had a large buildup of calcifications in and around the
ejaculatory ducts that was visible as he was doing the procedure. He aggressively removed the calcifications and the surrounding tissue around the ejaculatory ducts which inevitably caused retrograde ejaculation.
He claimed that the procedure effectively cured the prostatitis in these patients.
He believes this buildup around the ejaculatory ducts is also responsible for the extreme pain post
ejaculation in prostatitis patients.
He's the first urologist that I have encountered that claims to have actually helped people with prostatitis
using some procedure.
He also claims that Greenlight and Turp will probably make the prostatitis worse based on his experience with these procedures. He no longer does Greenlight. He also felt that Rezum and Urolift will probably not help or make things worse. He has also been doing Aquablation for about a year and he seemed really positive on that for BPH because retrograde ejaculation is much less likely than with HOLEP. However, he is not sure it would be helpful for prostatitis because he feels it essential to remove the ejaculatory ducts for it help prostatitis.
For many years I would always pee blood when I had a major flareup in symptoms. Since I started a low oxalate diet about 4 years ago I have not peed blood when getting a flareup. In addition, the burning pain has improved a little bit. He found this interesting given his finding of high calcification in
prostatitis patients. For those who might not know calcifications are frequently caused by formation of
Calcium Oxalate crystals.
He told me to try Finastride and Methenamine for about 3 months to see if they help before going for HOLEP.
He said I could do Finastride every other day
to avoid the side effects. My guess is that they either won't help at all or only a little bit just like
everything else I tried. At that point I will probably have him do the HOLEP procedure.
He claims there is a minimal chance of impotence or incontinence from the procedure.
I live in CT and he is out of network for my insurance Connecticare so I would have to pay out of pocket.
I turn 65 in January when I will go on medicare (original medicare not medicare advantage).
If I do the procedure I will do it then to have it covered. I just learned that it is important to get
original medicare and not medicare advantage because original medicare is not limited to a network like
medicare advantage. In addition, medicare advantage plans do not cover procedures such as PAE while
original medicare will. Also many Drs will take original medicare but not medicare advantage.
2 likes, 48 replies
hank1953 dantec
Posted
Thanks for sharing. Why do you need to take Finasteride before hoLEp ? Also, will the doctor take original Medicare ?
What tests do you need to have before hoLEp ? Thanks.
dantec hank1953
Posted
The Dr. simply wants to be conservative and be sure that all other options have been explored before resorting to surgery of any kind. He says that finasteride has been helpful for some of his patients. Of course, I'm not happy about the idea of retrograde ejaculation which is pretty much guaranteed for this procedure when done to primarily address chronic prostatitis especially if he finds calcifications around the ejaculatory ducts. However, given how debilitating the chronic prostatitis has been for so long, I'm willing to take a chance and make that trade off at this point.
The Dr. will take original medicare. To be honest I don't know if he will also take medicare advantage but I do know that a number of other Drs. I have consulted with said they will not take a medicare advantage plan.
He said that he would have to do a cystoscopy and a urodynamic study before doing the HOLEP. Possibly also an ultrasound but it may not be necessary in my case because I have a recent 3T MRI. If you only have BPH and not prostatitis you might talk to him about aquablation which he claims is much less likely to cause retrograde ejaculation.
hank1953 dantec
Posted
Could you please PM me Dr. Christopher DiBlasio contact information. I am only interested in hoLEp. No bandages and crapshoot for me. Thanks.😀
derek76 hank1953
Posted
You just need to google his name
hank1953 derek76
Posted
It can be very difficult sometimes that way.
hank1953 derek76
Posted
Very good reviews. I did find him as you suggested. Thanks. 😀
derek76 hank1953
Posted
I'm several thousand miles away from you and just input his name and the first three results were his direct personal contact details.
uncklefester dantec
Posted
Finasteride has done wonders for me. Thought for sure I would be having HOLEP in 2016 but after 6 months on finasteride my urinary symptoms improved. I don't think I have prostatitis though.
derek76 uncklefester
Posted
No side effects from Finasteride after all that time ?
tom86211 dantec
Posted
I had PAE in 2017 and it was completely covered by my Medicare Advantage plan from Kaiser. Only had a copay of $250, standard for any procedure where imaging is involved such as MRI or CT scan.
joe34587 dantec
Posted
HI Dantec,
welcome to the board. I have heard many men on this site (myself included) with large median lobes who did not get long term relief from PAE.
I had a FLA from Dr. Karamanian in Houston 9 weeks ago with excellent results so far. He did my initial consult for free. Others have reported good results from FLA as well.
Both are relatively newer treatments and we are still learning. Don't have anything to share about prostatitis.
Would suggest you learn more about FLA and consider as a possible treatment. Dr K Would probably read your 3T mri for free.
Good luck whatever you choose. Please let us know how things work out for you.
Joe
joe34587 dantec
Posted
HI Dantec,
welcome to the board. I have heard many men on this site (myself included) with large median lobes who did not get long term relief from PAE.
I had a FLA from Dr. Karamanian in Houston 9 weeks ago with excellent results so far. He did my initial consult for free. Others have reported good results from FLA as well.
Both are relatively newer treatments and we are still learning. Don't have anything to share about prostatitis.
Would suggest you learn more about FLA and consider as a possible treatment. Dr K Would probably read your 3T mri for free.
Good luck whatever you choose. Please let us know how things work out for you.
Joe
dantec joe34587
Posted
Thanks for your reply. I have been reading about FLA but Dr. DiBlasio's experience with finding calcifications around the ejaculatory ducts in prostatitis patients and his theory that that could be a source of the pain and inflamation makes a lot of sense to me. I'm not sure that FLA would be able to target those areas as precisely as HOLEP. My understanding is that the appeal of FLA is that it reduces chances of unwanted side effects like RE because it stays away from the most sensitive areas such as the ejaculatory ducts.
Of course the other downside is the out of pocket cost which I would be happy to pay if I knew for sure that it would solve my problem.
ian30145 dantec
Posted
I talked to my urologist about radical prostatectomy - remove the whole thing; there's an article on Prostate Clinic website recounting the happy outcome for one sufferer. But the urologist wasn't enthusiastic - said that potentially this op could make my condition worse. I don't know where I go from here - every antibiotic I've ever taken I've reacted very badly to - they're poison to my system
dantec
Posted
I have also talked to a urologist about Radical Prostatectomy, David Samadi, who is one of the best at it. He claims to have done 7000 robotic radical prostatectomies. However, he did not recommend it for BPH or chronic prostatitis. In fact, you might have a hard time finding a competent surgeon willing to do this for something other than cancer. If you do insurance probably won't cover it.
I'm probably going to do HOLEP in January timeframe and I could let you know how that turns out. It is a much less radical and less invasive procedure than a radical prostatectomy. Also, I would consider a simple prostatectomy before a radical one for chronic prostatectomy because again it is less invasive with less potential for side effects. Simple prostatectomy, however, is more invasive than HOLEP which removes about as much of the prostate as a simple prostatectomy.
MichaelVM7 dantec
Posted
dantec,
Dr. Samadi is widely acclaimed for robotic prostatectomy. Open prostatectomy is less common these days. Both radical prostatectomy (RP) and simple prostatectomy if done by incision (open) are equally invasive. In RP, the entire glad is removed while trying to spare the never bundles. In simple, the BPH adenomas are removed. But the surgeon must cut deep into the abdomen to reach the prostate in either case. In either case, potential blood loss is a concern, and a hospital stay of two nights with Foley of 10 days is the norm.
Yes, if the diagnosis is BPH (negative biopsy) then no urologist will perform an RP and no insurance company would cover it.
Looking at HoLEP viz a viz simple prostatectomy in terms of Qmax, reduction in PVR and IPSS, HoLEP offers similar long-term and potentially "one and done" results. Many other options, TURP and Urolift included, may require follow-up at 5, 10 or 15 years.
I was told that either simple prostatectomy or HoLEP would provide <1% chance I'd need another procedure in my remaining lifetime. I think for men between 55-65 who may live another 15-25 years, possibly even 30-35 years, opting for a one and done procedure should be considered. I mean, who would want to go through three TURPs?
You're right also in that SP and HoLEP do remove about the same amount of adenoma.
FLA appears to be a promising one and done procedure, but it does not have the 20-year track record of SP and HoLEP. And, good as Dr. Karamanian is, for a lot of men, $25,000 out of pocket is not doable.
Michael
dantec MichaelVM7
Posted
According to one of the articles I read Holep and SP have similar benefits but SP does seem to remove noticeably more of the Adenoma than SP. I don't know if this was done intentionally by the surgeons involved or if somehow Holep can't remove as much as SP.
tom86211 MichaelVM7
Posted
Michael,
Your analysis is absolutely on the mark. I had a PAE in 2017, then a bipolar TURP earlier this year. Both were partially successful but I am still having some retention and getting up frequently at night. It takes 3-4 tries to completely empty my bladder before I can get back to sleep. This is a lot better than before the TURP. My next procedure would be a HoLEP. The SP is a much more invasive operation. Five years ago I had radiation for prostate cancer, but I almost flew to NY to have Dr. Samadi do a RRP. Now, I wish I had done that. Removing the prostate means no more prostate, no BPH, and hopefully, eventually, control of any incontinence. None of the procedures are 100% guaranteed. The FLA is widely promoted here but flying to Houston, staying for a week, and paying $25k for the operation, transportation, and hotel stay isn't pocket change for me or most. And, even that procedure has not been completely successful as many here have reported. Then, there is the issue of bladder rehabilitation. After suffering from retention for long periods of time many here have bladder issues. My bladder is now very sensitive and I feel like I have to pee all the time, typical overactive bladder sensations. If my prostate had been removed then I might not be suffering from this bladder issue now - a very big deal.
Tom
MichaelVM7 tom86211
Posted
Tom,
My heart aches for you, seeing what you've been through and the pain of second guessing yourself (which I have a tendency to do as well).
How big is your prostate?
Did you see any gains from PAE in terms of urinary flow, quality of life and night time frequency?
I'm on the fast track for HoLEP but to be honest, I met with a great doctor but still am not sure he's the one to go with or whether that is the procedure for me.
My prostate is north of 130 cc and I have a moderate median lobe. All I do is take 0.4 mg Flomax every 12 hr.
HoLEP (in the right hands) offers long-term benefit.
FLA has not been around long enough to compare to HoLEP's 20-yr track record.
Obviously, simple prostatectomy predates HoLEP, and with a good surgeon, that is probably a once in a lifetime procedure. Granted, the recovery is the hardest. For a younger man in excellent shape, it should be an option on the table if quality of life is suffering greatly.
Can you PM me the name of the IR who did your PAE and who you're considering seeing for HoLEP? I can share more privately with you, Tom.
Wishing you all the best, both physical health and peace of mind,
Michael
MichaelVM7 tom86211
Posted
Tom,
Also, re: radiation and salvage prostatectomy..... removing the prostate following radiation is a difficult task many urological surgeons will not attempt.
Have you consulted with anyone from Mayo or Johns Hopkins for robotic salvage RP?In Chicago, Dr. William Catalona is widely known for nerve sparing RP, having pioneered that procedure with Dr. Brady Walsh of JH. They've probably done more open RPs than anyone in the U.S.
I will pray for you, Tom,
Michael
MichaelVM7 tom86211
Posted
I would have gone with Dr. Karamanian, but it would have required a 2nd mortgage and my wife didn't want to take on that debt.
I think, at the time, OOP expenses for the surgery would have been $21,000 - $22,000. It may have gone up in the last two years. Including airfare and hotel/meals/ground transportation/incidentals for 7-10 days in Houston (until the catheter is removed), and total expenses would be more than $25,000 (possibly $28,000 now).
I spoke with one man who had FLA and is doing remarkably well.
Dr. K is loved on this forum, and rightly so.
Unfortunately, with too many bills as it is and not making enough, Dr. K and FLA are merely a pipe dream for me. But for guys who can afford the procedure, it's worth considering. We won't know for another 10 years if FLA offers the same longevity as HoLEP, but the short-term results for most men look promising.
hank1953 MichaelVM7
Posted
Michael, FLA had a good start couple years ago and gave much hope for many on this forum. After that, more people went for it and the total results have been mixed. My best guess is that its success rate and effectiveness are better than Urolift, PAE, and Rezum, but less than Turp, and especially HoLEP.
However, even though few people complained of RE after FLA, I believe that its risk is still much lower than Turp and Holep.
Again, there is also an issue of how long it would last. I would not mortgage my house for it.