Three months after my PAE. Great disappointment.

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After 90 days of my PAE, I´m very sad and disappointed.

Problems that are arising:

#1 Burning pain during urination

#2 Reduction on urine stream (at the beginning I improved 60% and now only 30%). 

#3 Difficult begin urination and some dribbling is coming again

#4 Waking up 3 times every night to pee

#5 A feeling that, slowly, I´m returning to the point where I was before PAE (same symptoms, considering that I never use medicines to fight BPH).

Unfortunately I think, I´m on the unsucessful side of the procedure, and worst case scenario: there´s nothing I can do. After spending

US$ 14.000, I need to point also too that my pós-procedure was very painful and with much blood in urine and faeces which make me worried a lot.

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  • Posted

    I'm sorry to hear that.  I had similar results.  Do you know if you had an enlareged median lobe?

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    • Posted

      My IR said that an enlarged median lobe "wasn´t a problem" because it could be managed during the procedure. My prostate before PAE weighed 122grs. and I was considered a "good candidate". I´m doing some tests to know actually PSA, prostate weight and other. I´m reaching the point where "and now what can I do?". BTW did you know how much time one have to wait to perform another PAE when the first didn´t work?

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    • Posted

      I think you can do it relatively soon (after a year or so).  I do know that they don't have nearly as much success w/ enlarged median lobes.

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    • Posted

      Why would you want to repeat PAE ? Instead, look into FLA. It is new for BPH but has been used for PC for years. Many people on this forum had good successes, and are providing good support for others in return. Hank

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    • Posted

      hank1953, as you posted correctly there are not much information about FLA for BPH. PUBMED didn´t show any paper about this procedure used for BPH. I´m very afraid to do something after a painful experience with PAE right now. I posted about repeat PAE, but I really don´t have any input about guys that have done it. Just hoping to receive answers about someone that repeated PAE.

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    • Posted

      Hi Irp1,

      Sorry the PAE didn't work out. As you said, no peer reviewed studies on FLA, and while we have some good anecdotal experiences here, this should still be considered an experimental procedure until more data is available, not to mention dropping another 20K-30K after the 12K you already spent. 

      If it were me, I'd first try and investigate more why the PAE failed, before considering either another PAE or any other prostate reduction procedure. Was it the PAE itself that failed or was the PAE "successful" but your bladder was too flaccid (stretched) to function? I don't know what testing you had before, but cystoscopy, imaging and urodynamics seem to be in order, before moving forward.

      Jim

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    • Posted

      First of All, I am very sorry that your PAE didn't work out for you. I had a PAE done in 2013. It was my first attempt at fixing my BPH which was getting worse and worse. I had decent results at first in terms of stream and frequency but they only lasted about 2 years. It's not a robust procedure for many and is a gamble for those with a protruding median lobe. It's an untargeted procedure that is therefore has an element of luck associated with it. Not everyone is lucky or is anatomically suited.

      I disagree with Jim on FLA. FLA has been FDA approved for the treatment of prostatic tissue. PCA treatments which require very precise targeted ablations extremelt close to sensitive structures have been done  by the thousands with enormous levels of success. There are many forums out there with cancer patients waxing lyrical about there outcomes.

      FLA for BPH is way easier than FLA for cancer as it merely (like other ablating procedures) targets the trasitional zone and any other BPH tissue causing the patient's problems. There's nothing experimental about that. It's a very straight forwrd ablation usuing cutting edge targeting equipment. (without the prolonged exposure to radiation)

      I chose it because when you educate yourself on what's out there, FLA makes the more sense than anything else. An FDA approved prostate laser treatment, proven in thousands of PCa treatments; the FLA targeting of BPH tissue is hardly a leap of faith is it?

      As to why my PAE failed? I saw my 3T MRI prior to my FLA and Dr Karamanian showed me where how my median lobe had been totally missed by the PAE, had a healthy blood supply and continued to grow into my bladder neck ultimately causing AUR episodes earlier this year. 

      I agree with Jim on bladder function testing prior to doing anything. I dont agree with him that FLA is experimental. It's the most promising procedure out there for men who suffer this miserable condition. 

       

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    • Posted

      I am ; however, as positive and helpful as the anecdotal evidence on this forum is, I'm a firm believer in the science - and I think that the clinical studies regarding FLA for BPH is just beginning. So I'm waiting.

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    • Posted

      I agree he should have urodynamics testing prior to having another procedure, but if he got significant relief, even for awhile, he can surmise that at least a good portion of his problem is his prostate. If he woud be satisfied if another procedure would make his initial PAE results permanent, it makes sense to try something else - hopefully a procedure that will address his specific pathology.

      FLA (despite the lack of peer review on it for BPH) will probably work, but you'll have to fork over another 5 figure sum due to lack of FDA approval. I think a large median lobe precludes Uroflift (someone feel free to correct me if that's wrong) but it doesn't rule you out for Rezum, which is FDA approved and will likely be covered by your insurance. It does pretty much the same thing as FLA, but via steam and not a direct laser cut. Probably a bit less precise, but in skilled hands more than precise enough.

      But before jumping into anything else, I'd get the tests JimJames recommended, if for no other reason than to get a sense of the best likely outcome - even if another procedure will definitely help, it may not fix you completely. This will align your expectations with your pathology which is, especially after a procedure failure, a good idea. 

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    • Posted

      @ross:  I dont agree with him that FLA is experimental. 

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      "Experimental" in a medical context is commonly defined as a procedure or drug that has not yet completed the peer reviewed trial process, and usually that means Phase III. To my knowlege, FLA for BPH has not completed any peer reviewed trials and therefore is considered "experimental" by definition. There are common sense reasons why drugs and procedures are put into categories such as "established" or "experimental", and it's important for any prospective patient to be made aware of where a given drug or procedure falls. After that, if they want to take the relative risks, fine, but at least they will be informe. While FLA for PCa uses the same laser technology, it has different clinical objectives and therefore any data, other than safety issues, really isn't relevant for FLA for BPH.

      Jim

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    • Posted

      Ross,

      I just want to add that "experimental" isn't a derogatory statement, it just is what it is. I believe Aquablation, even though will probably be FDA approved this year, is also considered experimental because the trial data is still in review. 

      I suggest anyone considering FLA or any other procedure defined as "experimental" do their own research, not just on the procedure but on the risks and rewards of procedures in general that have not gone through the peer review trial process. 

      Jim

       

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    • Posted

      Jim, to best of my uderstanding and research, the FDA approval for FLA is for tissue removal in the prostate gland. It is not segregated to cancer vs BPH. The urological laser usage is also under this category. The main technigue of disparaging of the procedure is with the approval of the insurance and industry directed and controlled clinical studies. I will check this next week when I get some time and tell you what I find out of verification. I received this information from a director inside Medicare who verified in the same conversation that they are in fact mailing a reimbursement check on my procedure. 

      The fact that insurance has not previously paid or that clinical studies have been short to be conducted have nothing to to with a experimental designations and FLA is not considered experimental by the FDA. It is sad to say but a lot of clinical studies are very skewed and bias even to the point of false data reported in procedures and in drugs. There is a great free documentary movie out right now on Next Flicks called What the Health. If you have any interest to watch. Several doctors in this. It is not about prostates but applies in general. Interesting film.

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    • Posted

      j- It appears as though there were successful Phase I and II trials for the use of FLA for low grade prostate cancer lesions. The FDA has not approved this treatment for other types of prostate tissue as far as I know.
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    • Posted

      "the FDA approval for FLA is for tissue removal in the prostate gland"

      That is entirely correct John and my understanding is that it has been that way for 10 years.  Therefore FLA for BPH is merely an off-label application of an already proven and safe ablation technique. The ablation of the transitional zone of the prostate by way of this technique is hardly therefore a leap of faith or experimental but a natural progression of treatment options. This is why I believe insurance is starting to pick this up!

      Ross

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