Another FLA Experience

Posted , 5 users are following.

I flew to Houston, TX for a 3T MRI and to consult with Dr. Karamanian on Jan. 30, 2020. It was my first MRI, and it gave me a clear picture of the challenges that my enlarged prostate presented. Dr. K charged $200 for the consultation, and it was money well-spent.

Some background on me. In December of 2015, I was hospitalized with acute urinary retention. This surprised me as I was still urinating—pretty much as usual except that my stream was slightly slower. At the hospital, they drained 7,000 ml out—that’s right 7,000! They kept me in the hospital for 3 days. The urologist told me that I’d never be able to pee on my own again. I was also told I had bladder stones.

About 3 months after leaving the hospital, I learned how to do Clean Intermittent Catheterization (CIC), and started doing CIC 5 to 6 times a day. CIC allowed me to empty my bladder, and it also gave me time to research my treatment options.

After I left the hospital, I started researching my condition and options online, and I consulted with 5 more urologists, including two at the Mayo Clinic. They each told me that my prostate was large with a large misshaped median lobe. None could tell me the exact size of my prostate, but said I had a slim chance of peeing on my own if I went with their recommended surgery. The recommended surgeries included supra pubic prostatectomy, HoLEP and TURP. One of those may have helped, but my research revealed that if a prostate doesn’t fit certain parameters such size and shape, the odds of unwanted side effects increase.

In 2016, I opted for a Prostate Artery Embolization (PAE) as it was the least invasive procedure. PAE is done by interventional radiologists. The radiologist was able to tell me my prostate size, which was 90 cc. The size of my prostate was a good fit for the procedure, but my large median lobe reduced the odds of success. Mine was partially successful. After PAE, I started peeing on my own again, but not enough to reduce my CICs. PAE reduced my prostate to 86 cc, and allowed me to do a natural void before CIC. A few months after PAE, I had the bladder stones removed.

I continued to research, and about 3 years ago, I discovered Focused Laser Ablation (FLA). It appeared to be a good fit with my prostate parameters, but it wasn’t covered by insurance. I started saving up money for the procedure and continued to look for new treatment options.

In 2018 I started to notice changes. My natural void volumes and my stream were slowly decreasing. In 2019 CIC started to become more difficult. In January 2020, I went to see my urologist about a UTI and learned that my bladder stones had returned. I decided to go ahead with FLA.

Dr. Karamanian did my FLA in April of 2020. My prostate had grown to 120 cc, and my prostate median lobe was very large and misshapen. He ablated about 45% of my prostate, including much of my median lobe and prostate tissue along the urethra. At no time during the surgery, or following surgery, did I experience pain or discomfort. The only pain or discomfort I experienced was from the Foley indwelling catheter he inserted following FLA. Because he removed so much of my gland, he recommended having the Foley in for 14 days instead of the usual 7. The Foley started coming out on its own on day 10. When it started to happen, I called Dr. Karamanian, and he walked me through the process of taking it out.

I started to see improvements in my stream and natural void volumes at week 4 following FLA. I’m now 3 months post FLA, and last week, Dr. Karamanian told me that I can stop CIC. I will still need to check my post void residuals (PVRs) from time to time. I can do that with CIC or with a bladder scanner. Later this month, my bladder stones will be removed. It’s been a 4 ½ year slog, and I’m very grateful to all of you on this forum who have shared your experience and knowledge. You encouraged me to keep asking questions and to keep seeking the treatment that was right for me. Thank you!!

Stebrunner

0 likes, 5 replies

5 Replies

  • Posted

    How will the bladder stones be removed? Endoscopic laser or ? Will this be done by Dr K or a urologist?

    Best,

    Vincent

    • Posted

      Hi, Vincent,

      The 3 bladder stones will be removed by a urologist. One of the stones is actually a kidney stone that dropped into the bladder but is too large to pass. I'm not sure how the stones will be removed this time, but imagine it will be the same as last time-- via Transurethral cystolitholapaxy. They use a cystoscope which delivers ultrasonic waves or laser to break up the stones. I'm not sure which will be used.

      Stebrunner

  • Posted

    Thats wonderful news . !

    I had turp back in 2019 and cutting a long story short it was successful but not without a few worries along the way . What really struck me about your story was the volume of urine that built up in your baldder as I had about 1.7 litres at peak before I started CIC ..I thught that was a lot .

    From your experience so far do you think your bladder is recovering it`s elasticity & muscle tone .I have a theory and it is only a theory that bladders can recover quite well depending on our individual circumstances .

    I read about trebaculation and how it ruins a bladder ( I was told by a Uro nurse also that trebaculation is not revesible ) but from my experience over the last 18 months it feels to me , as if mine is well on the road to recovery and some normality .

    What is your personal opinion on this .?

    Thanks

    Geoff

    • Posted

      Hi, Geoff,

      After I left the hospital, I was surprised by how quickly my bladder started signalling it was time to pee after my Great Retention. One forum poster, Jimjames, developed a strategy to rehabilitate his bladder, and I started following it. The strategy is to keep your bladder total volume below 400 ml (to keep it from stretching out again) and to gently push a few times with your detrusor muscles while you are draining your bladder via CIC. Doing a few gentle pushes is supposed to give your bladder muscles a little workout. Dr. Karamanian told me that my bladder probably had some unrepairable damage done during my Great Retention, but he thought that the rehabilitation strategy I had been following would improve my odds of completely emptying my bladder on my own.

      Early in my BPH journey, I realized that my problem was twofold. I had a pipe problem in that my urethra was constricted by my enlarged prostate, AND I had a problem with my pump in that my bladder walls had been stretched and weakened. The urologists all focused on the pipe problem, and they would look at me blankly when I'd ask how they suggested we repair the pump. They are basically surgeons, and I don't think they know much about rehabilitating bladders.

      I don't know if my bladder is regaining elasticity; however, in the past month I've had some incredible streams when I pee. My stream strength isn't consistent at this time, and I sometimes think the stones occasionally interfere. It will be interesting to see if there's more improvement after the stones are removed.

      Stebrunner

    • Posted

      Thank you for your reply . It is so valuable to hear others stories .

      My very best wishes to you Stebrunner and good luck for the future. !

      Geoff

      Birmingham (UK)

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