PAE in Oct, 2017 and FLA in June, 2019. Updated as of Aug 1 2019. All good!
Posted , 13 users are following.
Hi to all fellow sufferers of BPH. Just to say you are not alone plenty of us are struggling with mixed, variable and incomplete medical advice on what to do are our ability to void slowly disappears.
I have now had a PAE with Dr. Schlaphoff in Sydney Australia Oct 2017 and six weeks ago (ie June, 2019) a Focus Laser Ablation (FLA) with Dr Karamanian in Houston. so thought with these behind me could offer a somewhat unique perspective.
Two years ago things were getting really bad several near fully acute retention episodes and a UTI forced my hand to make a decision. Also terrible frequency, 5 - 7 times up at night, urgency, etc. About 130 size and a large median lobe pressing into the bladder and causing restrictions. Taking two a day Tamsulosin. Two different Urologists suggested a TURP as the gold standard of care though actually only told me very little about it. However when pressed they both said their was a reasonable chance of incontinence, retro and ED and there were no guarantees. As a 52 year old that sounded pretty bad.
Spent a lot of time reading these forums and doing my own research. I considered the Rezum procedure and did consult with the lead investigator doctor. It sounded like the results might be better than a TURP however the process and recovery as described did not seem to compare well to the PAE in my opinion. (I have not had Rezum just did some research so can not know for sure.)
I eventually chose the PAE and Dr Glen Schlaphoff in Sydney Australia. He is a real pro - has a great caring team, the latest equipment and is a leader in the field. The operation was painless, no catheter, home the same day and the care was excellent. However due to the architecture of my blood vessels he was only able to do the embolization on one side as he felt it unsafe to do the other side. Even so I had remarkable improvements in flow, frequency, urgency, started sleeping through the night and went off the Tamsulosin. It was like getting my life back. Easy gentle process with great results the only downside the median lobe was still big and still there. As I had no other choice at the time he saved me from a TURP and I am very grateful.
However my prostate kept growing and based on another 3T MRI in April of 2019, with an even bigger median lobe and symptoms slowly returning it was time to look at options again. Consulted with two Urologists both said TURP the way to go. Consulted with Dr Schlaphoff - he was again terrific, took time for me and was open and honest - we could try PAE again and it might buy some time but with my unique architecture he was not sure it would be best. I asked him about FLA and he was aware of it and thought it might be worth considering though he was not yet offering it in his practice. What a joy to get an honest opinion like that. He is really a terrific doctor and I would highly recommend him to anyone with these kinds of problems. I believe that his other patients where he could do embolization to both sides continue to do well over time so far.
So that brought me to Dr Karamanian to learn about FLA. He took the time to read both of my 3T MRI's and called me in Sydney. He was generous with the time up front at no cost and was clearly focused on care and achieving good outcomes. He is a unique person in his knowledge of engineering, medicine, lasers and IR and is a real pro - and a great human. He told me that he started out doing FLA for prostate cancer and then later discovered from his cancer patients that they were no longer suffering from BPH symptoms. This led him to start doing FLA for BPH. He now works on the prostate exclusively which I think is a big deal in terms of learning and gaining experience. He has apparently now treated 250+patients for prostate cancer and or BPH. He mentioned the BPH results are very good for flow improvements, with very limited side effects regarding ED or incontinence and limited retro.
I had the FLA on June 18th 2019. Started at 6am very nice so not waiting around all day fasting... canular in, twilight drugs in (no general anesthesia), local pain killer in up front then the foley in. Not nice but did not hurt. Then onto the MRI machine lying down on the stomach fairly comfortable. Partial memory of the operation - could hear a few things but no pain then it was done. The FLA is done through the back door although you are not really aware of it at the time. They are also pumping cold saline through the foley to protect the urethra from the lasers' heat so plenty going on. Took 4 hours then went back to the hotel for recovery. Catheter in for a week. Did not enjoy that but not that bad really. Hardest part is keeping everything sterile and clean to avoid getting a UTI and it limits mobility a bit.
The day after the operation went back to Dr Karamanian's office for a follow up. He showed me some images from the procedure and the before and after images. It was eye opening - You could clearly see that he was getting within 1 or 2 mm of some critical areas without hitting them. He believes that he ablated more than half the prostate and there was clearly no blood flow to those areas. More specifically he ablated the areas in the "transition zone" specifically to improve flow. The median lobe appeared to be gone. Looked really good we will see.
For the first week no pain, able to sleep, eating normally. Got the catheter out day 7 again no pain not a big deal. I will say though that the nurse (Donnie) came to the hotel to take it out rather than making me go to the practice - a very nice and thoughtful thing to do. He mentioned there might be some retention issues in the first 24 hours however so far so good.
Also hardly any bleeding at all whether during or after the procedure. What a difference from a TURP.
Also Dr Karamanian and Donnie had both said it takes three weeks to "break even" on your flow and then you will see improvements.
In week 1 was already waking up "feeling like a man" so no concerns about ED. We will have to find out about the retro later as have not tried yet.
I kept feeling better and more healed through the first three weeks. During the fourth week started to experience fairly strong pain (burning) during urination. Also started to have a lot of frequency and nighttime wakeups. Also started to see more blood in every urination. This was a surprise and followed up with Dr. Karamanian. He mentioned that as I am fairly young, and my prostate was approaching 135... that he had to take quite a lot to achieve a durable result. He mentioned he believes he took somewhere between half and seventy percent of the prostate and that the healing might take as long as 2 months. He was very available and caring.
In week 5 the frequency and pain continued and I started to pass a few blood clots. This was also a surprise and when I emailed Dr. K he responded within 15 minutes to assure me that was normal.
Happily on day 33 the pain receded, the bleeding dropped off, the clots ended and suddenly I was getting 5 to 7 hours of sleep without waking up - hurray! It was like a light switch change. Now it is day 44 and have had great blocks of sleep every night since.
The flow is wonderful almost forgot what that felt and sounded like. Had a bit of leakage (few drips not much) for the first 4 weeks or so and that has ended.Can typically now wait 3 - 4 hours between bathroom visits.
Wife is happy everything is working just right... 😃
The one open question is retro. Whenever I am taking 2 flomax a day I have retro so until I can drop that back down will not know but am hopeful. That day is close now.
So while the recovery had some ups and downs so far it has not been that bad and is significantly better than a TURP and flow is really great now.
Final thoughts.
Both the PAE and the FLA procedures were not painful and not that bad.
I found the PAE a bit easier, it was shorter, had no catheter and gave me excellent results pretty quickly. However for me the PAE was not durable whether because of doing one side or because the prostate was able to re-vascularize I don't know. Also there is some radiation but that did not overly trouble me.
Knowing what I know now if I was a candidate for PAE, thought they could do both sides, did NOT have a prominent median lobe and could get Dr Schlaphoff - I would have confidence in doing this. Time will eventually tell us how durable it is and if re-vascularization is a limiter.
The FLA was more involved and included the catheter for a week however again not that bad and much easier than a TURP. It was clear in the images that he smashed the median lobe and opened up the flow areas. No ED and no incontinence. Flow is just so GREAT. I am hopeful that this proves to be a durable solution.
Knowing what I know now - if I was a candidate for FLA and could get a time with Dr. Karamanian I would have confidence in doing this. While FLA had more recovery time and was a bit tougher, the results so far, are better. So for now waiting and will provide more updates as time goes by. Fingers crossed that flow stays great and that when the flomax ends the retro ends...!
For me, so far, the FLA appears to be the more effective solution but time will tell.
Good luck to all!
0 likes, 10 replies
martass joe34587
Posted
Thanks Joe, for sharing your experience. Very informative and educative. Thinking about going to do PAE .
l seem to be having a problem with my Urologist who doesn't want to discuss anything. l am seriously thinking of going to see a different urologist. Seems you are able to easily go to different urologist.
joe34587 martass
Posted
Hi Martass well my urologist did not like the idea of a pae and did not like the idea of fla either. I got a referral to a different urologist who was more open minded but still preferred TURP.
Dr Schlaphoff in Sydney who did the PAE is an interventional radiologist.
Dr Karamanian who did the FLA in Houston is an interventional radiologist.
I basically referred myself to them both.
kenneth1955 joe34587
Posted
Hey Joe
Glad all is in working order. Dr. K is a very good doctor. With you taking Flomax it is going to take a week or so for it to get out of your body.With him showing you that he was within the 1 and 2 cm of all the good stuff you should be up and running in a while. You have a good chance
Don't rush it. Your doing great
All the best...Ken
ES28567 joe34587
Posted
Great success story. I wish Blue Cross would start covering FLA.
rdemyan joe34587
Posted
Glad to hear you are very happy with your results. However, based on narratives from some other posters who recently had the bipolar TURP, your FLA recovery does not sound like it was "significantly better" than TURP. It actually sounds like your recovery took somewhat longer and that you had somewhat unexpected difficulties in weeks 4 and 5. Still since you are only 52, FLA was most likely the better choice because it has a lower probability of RE and possibly ED. The other thing I like about the FLA is that the IR uses MRI images both before and after. I don't think this is the case with other procedures, although I guess a patient could pay to have 3T MRIs done before and after another procedure. Why urologists seem so resistant to using clearer MRI images versus grainy and difficult to read ultrasound images is a mystery to me. I thought it was cost, but I recently had a 3T mp MRI in San Francisco that cost me $1300 (self pay). Others have posted that they have self paid as little as $800 for a 3T mp MRI (IIRC in Florida and Texas).
joe34587 rdemyan
Posted
Hi Rdemyan,
Thanks for your kind response. I agree having the 3T MRi is great. In Australia it only cost $400 though perhaps the medical system here has more of a subsidy not sure.
Having not had a TURP it is hard for me to really compare. My father had two of them and took 4 - 5 months to recover each time with much larger amounts of blood loss, pain, lost sleep, unfortunate side effects, etc. They were only two years apart the Urologist told him they could only take so much tissue each time due to the excessive bleeding and he may have to go back again in a few more years.His prostate was even larger than mine. I acknowledge that that is a sample size of N=1 and he is older however it might possibly be a good proxy for what I could expect - don't know for sure.
I am involved in the medical community supporting work to develop new drugs and biologics most often for orphan diseases (ie smaller patient numbers where no good treatment options currently exist) so am more open to try new things myself. Also have observed, from time to time, resistance to change from medical professionals when newer and better treatment options become available. In fairness there is so much development activity it can be hard to keep up but have seen clearly improved medical outcomes with a new treatment and it still takes years for the education and change management to happen. I suspect that may be the case with TURP as more and more new treatment options become available - especially when the new treatments can only be delivered by a unique subset of doctors (IR's vs Urologists.) Just my 2c.
Good luck to all of the men suffering and trying to find the best path forward.
rdemyan joe34587
Posted
Hi Joe.
Thanks for the reply. I suspect that your father had the monopolar TURP, where there typically is a lot more bleeding. Having said that, it sounds like you made the right choice to preserve your sexual function at what is still a relatively young age. There are obviously a number of different ways to go, but I personally like a procedure where the doctor can clearly see what he is doing and what is happening. I don't like Rezum because the steam is just sprayed into the prostate and it certainly does not have the mm accuracy that something like FLA has. I'm considering a PAE, but right now my symptoms seem to be well controlled with dutasteride and alfuzosin. In the near future, I am looking to either get off the drugs or reduce the dosage significantly (fortunately, I do not have an enlarged median lobe). If I do that, I'll post my plan and keep the board apprised of progress.
Best of luck to you.
joe34587 rdemyan
Posted
Hi Rdemyan,
For more clarity my Dad had the newer "Button TURP" each time which is a bipolar cautery vaporization. It is apparently less invasive than the older TURP procedures. Instead of a wire loop on the end of the scope, it has a small, button-shaped tip to vaporize prostate tissue via low-temperature plasma energy.
They told him the healing would be quick with limited bleeding however his experience included lots of bleeding and a long recovery cycle > 4 months.
Of course it might be different with other people but that was his experience.
Cheers.
Joe
j12080 joe34587
Posted
Joe, this is a great story and most of the time you don't get to hear the guy's who are the 85% of these procedures that are successes on this web site. The men who "hit the jackpot" with procedures tend to just move on and enjoy life again. I commend you for your time and interest in reporting the detail of your success. Thanks for remembering the guys still trying to find an answer and relife. We who have been blessed need to remember our brothers in BPH suffering.
I think the most important part of your message is that the Doctor that one chooses to preform the FLA is the most important part of success. Dr. K and Donnie are the most amazingly caring people I have ever met in medicine. As you said, Dr. Karamanian took 4 hours for your procedure. Most Doctors take 45 minutes to an hour and a half. This is because Dr. K. really checks, double checks and triple checks each time he pulls the trigger on the laser. He sees it, he measures it, then he does the same procedure a second time. He and Donnie stay in constant communication on every thing especially the temperature of the tissue and the running of the coolant flow during the procedure. Also the fact that Dr. K. studied Bio Engineering prior to he medical studies gives him a advantage in look at a patients MRI and pre-outlining the game plan for exact tissue removal. Other doctors don't bother with this they just go in and start shoot. This technique is what also happens in REZUM with the urologist. No eyes on the target during the procedure.
I am happy for your success. I wish Insurance would cover FLA but the urological association is very large and powerful and they don't want procedures available to the urological patients if the Urologist cannot make money from the procedure. Interventional Radiologist are the only ones that can do FLA. Their lobbying association is very small. I wish I had a lot of money. I would start a foundation and fund a clinic that could support BPH sufferers. Good luck and keep reporting on your success and offer to help other men in their search.
Bobcats joe34587
Posted
Thank you Joe for this great report! I am 54 , so I can really relate to your story. I have said it many times on this forum but it is hard to keep track of user names stories...I had PAE April of this year with great results. My vascular architecture , as you put it, was very accessible for the procedure and my quality of life is so much better than I could have ever hoped for. But if things start to turn in the wrong direction for me, I want to stay close to this forum for info like what you have provided.
3 months and I take no meds whatsoever, but out of fear I always keep self catheters close on hand!