Had FLA for BPH done Feb 13

Hello,

I am 54, and was considering Holep. That may still be in my future. For now FLA has worked for me. It was great at first, but my stream seems to be a little weaker now than it was a couple months ago. I was also concerned about some of the sexual side effects from Holep, but dislike the side effects of not being able to pee more. 

I am happy that I had FLA done, but the durability of it is what everyone seems to be questioning.  

Cap. Whhat you have to do is look at want you can handle. You may not have a problem but you may also end up with the short end of the straw. At you age can you deal with any sexual problems leaking and retro. Can you deal with that. Don't let your systems tell you want to do. If you can wait and look more into fla do so. Maybe CIC would help till then.  We should not have to pic one or the other. Good luck. Ken

Hi Moto, just curious. Did you have an after-FLA MRI to see how much was removed ? Re Holep, from what I've read, it has the better results, except for the high risk RE and incontinence. The incontinence can last for weeks post op. But of course, you already know all this. 😀

Is Holep covered by your insurance ? Hank

Hi Motorman,

Were you part of the trial or did you have FLA private? I ask because I was just in touch with one of the trial participants who also had a very good initial result and then things got worse after he stopped Alfluzosin, which apparently is required for trial participants for six months post FLA.  Just wondering if you also were Alfluzosin post FLA and if that could have been the reason why results were initially better. Also, have you had your PVR measured recently and if so, how does it compare to pre FLA? Hope all else is well.

Jim

I was not part of the trial, and never took that drug. It is news to me that all trial participants would have to take alfluzosin for six months. Maybe some can chime in. 

I had been taking Terazosin before and after the procedure, 10 mg. I stopped taking that after a couple weeks after the procedure.

I did start taking it for a brief time about two months ago in a smaller dose of 2 mg daily, then stopped about a month ago. I can’t tell the difference really. I have an overseas trip next week, and will take it for prior and the duration, as I am not sure how the 13 hour plane ride will be. 

My PVR was measured recently, I think it was 30 cc? No problem there, and I did not have a problem emptying before the procedure, just how long it would take. I would from time to time have retention where I could not urinate.

i think some of my issue was an overactive Bladder. I was not used to letting my bladder fill up much. I am able to hold it much longer now than say the first 4 months after the procedure. And when I do have to go, I have a pretty decent stream

Motorman,

Thanks for the clarification. I was just recently told all trial participants have to take Alfluzosin for six months after FLA, but like you say, maybe we will hear from others.  If you haven't tried Kegels or timed voiding for OAB, some report good results. But given that you never had retention, not sure another prostate reduction surgery will help much, whether it's a FLA re-do or Holep. I can't remember if you ever had urodynamics, but at some point you might consider video urodynamics to really pinpoint the dynamics of what is going on because imaging only gives indications while urodynamics measures functions.

Jim

I had urodynamics testing done and was told I had an Atonic Bladder. So I am not sold on that particular test method...

That one test sent me to a number of other doctors to test for MS, nerve damage, MRI of my brain, back, etc

Dr K told me that the MRI doesn’t show an Atonic Bladder, that it looked healthy. 

So the only thing I could come up with from that urodynamics test, is that maybe I failed the test because of a shy bladder and was misdiagnosed because of that test? I was having a hard enough time peeing on my own, but to do it in front of a couple of nurses? I’m thinking the test may be flawed. I learned what paruresis was after that test, and looking back, I probably had it.

Hey guys my brother just had his FLA done this past Thursday as a part of DR Ks study, and no mention was made of staying on the afluzosin past the 30 day supply Dr K gave him.

Yeah, "atonic" bladder is not consistent with your low PVR. Like in many cases, I think it less the test was flawed than the person giving and evaluating it. In addition to what you said, sometimes they simply fill the bladder too quickly and get a false negative result. I know it may not be easy to find the right person, but video urodynamics is usually only offered at major teaching hospitals, so I'd start there. Certainly a lot less to lose than having another surgery that may or may not help.

Jim

Hi Joe,

I am not part of Dr. K's trial so I only got the info 2nd hand, but I was told by a trial participant that he was required to take afluzosin for six months because he was part of the trial. This particular person had the surgery over six months ago so it's possible that trial requirements have changed or there is some miscommunication somewhere. If I were a patient of Dr. K., I'd probably ask him directly, but I'm not. 

Jim

I can tell you that myself, Ross nor Victor were on the Alfluzosin for more than the one month 30 day Rx. I will check next week with Doctor K's office and see what his protocol actually is. 

That would be helpful. It's the "trial" protocol we're looking for, not what he may recommend to a private patient.

Jim

HeyJohn,  if you were on the drug before the procedure and you were part of the trial, he asked that you take that same drug for six months after the procedure.

Motoman, I thought I would let you know I am on the last 30 days of the first full year and everything is very satisfactory for now. I don't expect any changes for at least two more years. I am hoping for 5 to 10 but I also want to be a scratch golfer again and thats not really going to happen. I give FLA better shot than the golf score. 

 

So not Alfluzosin, but whatever you were taking before the procedure?

Trustme: " ... asked that you take that same drug for six months after the procedure... "

Hmmm. Wouldn't that be cheating ? How would you know if FLA is helping you or not, until 6 months later ? Hank

Hey Jim the only thing that was required of my brother to be part of the trial, was not having a prior procedure .(Which is what knocked me out of the trial. ) And Dr K gave him certain surveys to fill out at 2 months, 4 months and 24 months. Other than that that is all he was asked to do. Definitely worth the savings.

That is great news John.

Keep your hopes up for the golfing.

I am at 9 months now. I would rate mine as good, not great. But I can live with these results just fine, I am happy with the results, and would do it again. I hope to get at least 5 years. Maybe by that time a permanent cure will be found. We can hope

I can’t speak for those guys in the trial, as I was not part of it because of a prior procedure. But I can tell you there was a huge difference in the flow rate after the procedure, taking the medication, and not taking the medication. 

Any drug.   They want an apples to apples comparison.  

I guess the 6 months of drug continuation requirement only applies to trial people. Am I correct ? What if the patient was doing fine before the procedure, wants to do it just to get off the drugs ? Then it's almost a guarantee of success, for the first 6 months, statistically. Hank

But why if the procedure worked and cleared the bladder. Why do you stll need the meds. Ken

Hi Joe,

"TrustMe", a trial participant just posted that if you were taking Alfluzosin prior to the study, then you are required to take it for six months after the procedure. Apparently, your brother was in a different situation.

Jim

@hank: What if the patient was doing fine before the procedure, wants to do it just to get off the drugs ?

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If I was such a person, I'd stop the drugs enough time prior to FLA so that I was no longer benefiting from them. My hunch is that in such a case Dr. K. would not require the drugs for the six month post FLA period. 

Jim

Jim. Im not getting this for some reason.  If the procedure worked why do you still need the pill. Isn't having a procedure done to get off the pills. Ken

I am not sure I do need the meds. I was having some issues, mostly at night, so the Dr thought I should try a low dose to see if it improved things. He also thought I might have prostatitis going on. So I tried them for a month, and like I said, I can’t be sure they are helping or not. So I stopped. But because I am going on a long trip with a long flight, I don’t want any issues where I have had issues in the past trying to pee on an airplane. For some reason, I would have a tougher time peeing on airplanes or boats when they are moving. So I am going to take the Hytrin for that period of time. For the 9months after my procedure, I was taking the pills for maybe 1.5 months of the time.

I actually think now my bladder is becoming retrained if that makes sense. Maybe that was my issue as much as anything. I’m trying to learn what makes my body trigger different events.

Thank you for the reply. I know the main reason for some men are to get off the meds but rrading about 6 months before and 6 months its making me think. Sorry i got nothing else to do in this hospital but lay in bed and watch tv. Waiting for the other round of antibiotics.  Take care. Ken

Ken,

You're assuming the procedure works 100%. All the procedures have some marginal results, including FLA. In those cases, you may still need the meds. That said, I see your point and agree. If I didn't think a procedure would get me off the meds, I'd probably just forget the procedure and self cath. But that's me. 

Jim

The meds are only required for trial recipepients.   If you have a certain IPSS score before the procedure and you are on the meds, they want to see what your score is after the procedure with all other things being equal.  Made perfect sense after Dr. K explained it.  I am off all meds now, but my IPSS score has increased slightly after stopping. Also, it is only for six months.

Moto, can you tell if you are now, without any meds, peeing better or worse than before FLA, but with 10mg terazosin ? Hank

But isn't that the reason we have a procedure done to get of the meds. Its just very confusing. But doctors do not know if a procedure will work until its done.   They can only suggest.  Ken

Jim: ".. I'd stop the drugs enough time prior to FLA so that I ..."

Good idea, Jim. Except this 6 months deal is strange. I never heard of it with any other procedures, trial or not. Hank

Hank,

I am much better now without any meds than prior to the procedure. I was having to self cath at least 3-4 times per week, and didn’t know when I would need to. That is why I did the procedure, after the Itind did not work for me. It worked for a while, which is why I was pretty sure something more aggressive would work. I still have a large supply of catheters I hope to never need to get out again.

I have a smaller dose now, 2 mg vs 10 mg prior, but like I said, I can’t figure out if it is doing anything when I take it or not. I will know more in a week I suppose.

Ken, that may be one of the reasons to have a procedure. In my case, one of three reasons. No meds, no self cath, and being able to pee when you need and want to in my case.

Hope you have a safe trip. Ken

@Hank: I never heard of it with any other procedures, trial or not. Hank

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I believe this is an observational type trial with no control group so I guess they can do whatever they want. 

Jim

I also have a big box (100) of those Catheters put away. Hopefully one day I will stop being lazy and donate them to someone. 

Great news Trustee. I am very happy to hear about the improved score after FLA with Dr. K. I would not know about that 6 month thing on meds as I was not privelged enough to get in that trail but happy you did.  

Ha Ha, I also have a big box (100) of those Catheters put away. Hopefully one day I will stop being lazy and donate them to someone that can use them. Glad to hear you are better than you were before the FLA.  I never heard of the six month deal either???

How are the bikes? 

Sorry that was to Motorman.

Hank, just a side note, I don't take the meds, Victor does not take the meds, Ross does not take the meds and I think Pete is now off his pre procedure meds. I don't know why to any of that all our cases were different. 

Pete (USA) here, 10 weeks FLA post-op, discontinued Alfuzosin 5 weeks post-op. Was on it for about 20 years. Completely drug-free and I can pee about 6 feet in front of me, which is something I could not do even when I was a teenager. IPSS from mid-20's to mid single digits. If anything, I keep getting better, which is nutty. My life has been completely changed. No side effects whatsoever other than slightly diminished ejaculate volume. 

I am so glad I waited until FLA became available, so thankful Dr Karamanian was bold and brave enough to offer it and that he makes tremendous efforts to help those of us who do not live in Houston. 

There is a dedicated thread I posted here on my specific situation.

 

Congrats Pete!!! This is great to hear.

Pete so happy that your happy.  I think the reason for the diminished volume is because you have less of a prostate.  But I think some is better then none.  Good luck and god bless heal well  Ken

Peter, that is amazing. I am so happy for you. For a moment I confused you with a certain Peter from Hong Kong who has also had wonderful results.  I will be sure to check out your thread.

Ross

Ross

How are you doing?  I see you every once in awhile on the forum.  Anymore problems after you ejected the stone?  I am still doing pretty good.  Lots of things going on right now and just wondering how you have been doing.  Have a Hppy Thanksging.

Mike

Mike, I've been super busy and away from the forum for quite some time. I am doing super well thanks and couldn't be happier with my results. It's been 6 months now and I am just so thrilled to have my quality of life back. Glad to hear you are well and wish you and your family and all the US readers a very happy Thanksgiving.

 

"Anymore problems after you ejected the stone? "

LOL!!! Quite the contrary, It was the moment I realized that FLA had really worked.

 

Thanks Pete, that is great news, especially to us guys who are a short time out. I am 5 weeks post Thursday, and doing very well. I sure hope I have as good of results as you.

Thanks for posting

 

Hi Joe, for me the magic really started weeks 5-8. It was better before then, but just kept getting better. Wish you only the best, of course.