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John Hopkins Brady Urological Clinic

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vigneron
vigneron

I have an appointment at Johns Hopkins in Monday to go over options for BPH.  Has anyone had any experience at this clinic? 

AT one time, Hopkins was famous for prostate problems; I do not know about now.  I was there years ago and had two prostate biopsies performed.  The first one found pre-cancerous cells and the follow up one  did not find any.  Since that time, I have been going to the VA Hospital in Martinsburg, WV. 

At Johns Hopkins they gave me absolutely no sedation for the biopsies and one lobe was very sensitive - inflamed and really hurt to be biopsied.  A few yeas later, I had a biopsy at the VA and asked them for IV sedation.  They said "Sure man, we can do that for you.  No cancer found in that one either.  It has been years since I have been to Hopkins but I am still in their system so I thought I would consult with them.   I believe they have a PAE study ongoing.  I have also gone to Inova in Alexandria and have had a consult there.  I am going to take my time and get more than one opinion on the best procedure for me.  This forum has been very helpful to me.  I have a CT Urogram and will have a 3T MRI on CD for them to evaluate so they will have plenty to go by.

1 like, 15 replies

15 Replies

  • john15876
    john15876 vigneron

    Posted

    Top tier ask a

    Lot of questions at least you

    Are seeking help folks like me waited way too long and tried to solve my huge prostate with mom meds and

    Needed surgery long before June 14'still suffering recovery from Turp 

  • BobbyT
    BobbyT vigneron

    Posted

    John Hopkins is supposed to be excellent but what really matters is the doctor and what he has been taught to use. There are a lot of different techniques. All have risks. Weigh them carefully because what you do is permanent.

    I joined a clinical trial for iTind device under investigation by FDA. Been used for years in Israel, Europe and a dozen countries around the globe. I decided upon that method due to low rate of post op complications. No long recovery, very little chance of incontinence, ED or retrograde ejaculations. Very gentle procedure and it worked great for me but that all depends upon your condition. If it had not worked for me the other options were still open to me. But once you have TURP or HoLEP there is no going back because that tissue is gone and if they damage a nerve - oh well.

    Good luck and listen carefully and ask lots of questions. All of the methods are good when they work. It is when they do not work that you have lifetime problems.

    • don30615
      don30615 BobbyT

      Posted

      Thanks very much for all the information about the ITind device. It's always heartening to hear a success story. I had a PAE done recently with somewhat unclear results. I'm not ready to undergo another procedure yet, but am looking into other options in the event I do decide to try something else. Do you mind if I pick your brain a bit? Here are my questions:

      --Why did you opt for ITind over other noninvasive procedures with low risk for retro and other side effects (e.g., Urolift and Rezum);?

      --What's a good source of independent information about ITind?

      --Where did the trial you participated in take place?

      --Outside of the trial, is the procedure being performed in the US?

      Thanks for any info you can share. 

      Best of luck to you.

      Don

  • paul96555
    paul96555 vigneron

    Posted

    This sounds thoughtful.  There has not been much written about I-TIND on this forum.  I have a hunch that the tissue might grow back inwards over time, but then again : maybe not, maybe the egg whisk pushes it out far enough and hard enough that it holds.  If as you say it is fairly risk-less, no risk of strictures or that sort of rubbish, and more or less painless, then you've little to lose if you can afford to still do something else later if needed. 

    • BobbyT
      BobbyT paul96555

      Posted

      There is no "one right for everyone" procedure because there is a wide variety of prostate sizes and shapes. Just as one man can be tall and skinny and the other short and fat so too the shape of each man's prostate presents a different problem to solve. Think of the variety of shapes a simple tomato can grow into.

      The iTind device does not "push back" the tissue but makes an incision. Instead of actually cutting tissue which caused trauma to the surrounding area it compresses the tissue it contacts and that tissue dies off and sloughs off like a scab. You are left with incisions running the length of the urethra and bladder neck. It is a very precise procedure because it is the only procedure done under direct visual observation. That way the doctor can avoid injury to the seminal vesicles. I believe that the other methods are done by ultrasound or MRI so they are less precise. Also, they can injure tissue and nerves that remain which can cause incontinence or ED.

      The big question about iTind is duration of effectiveness. Effectiveness of all procedures do diminish over time because the prostate does keep growing it is just that for most men, especially the older men, the effectiveness outlasts their lifespan.  So far I understand that nobody has had to repeat the iTind procedure and it has been used for almost 6 years. That being said the manufacturer and the urologists doing the procedure do not see any reason why the procedure can't be repeated in the future. It would just reopen the incisions.

      Those for whom the iTind did not work they went on to use TURP or another procedure with varying degrees of success, however the success of the followup procedure does not seem to impacted by the iTind device.

      For myself I would gladly repeat the procedure every 6 years or so if need be. It was that gentle. Just some soreness for 5 days and a little burning when I urinated, but once it was removed all discomfort went away. Sort of like the "aaahhhh" feeling when you remove a pebble from your shoe. Since then it has been like I was in my 20's and 30's. No urgency and I feel like I completely empty my bladder when I need to.

      It

  • paul96555
    paul96555 vigneron

    Posted

    NB I am not saying this is the case for I-TIND, but for the other procedures I think all of them do represent a bit of a throw of the dice as to how well they work; if any one worked overwhelmingly well, it would out-compete the others, even with the stickiness to the competition that most uro's learn one or two techniques or maybe three (mine knew how to do 4, TURP, PVP, Holep and Urolift); new Uro's coming thro' would learn that best technique for all situations, with no more drawbacks than others, if it existed.  Of course it's not like that, hence the large number of different techniques none perfect for all. 

  • bobby72221
    bobby72221 vigneron

    Posted

    I had a bph procedure done while having my Focal Laser Ablation of prostate.  The prostate was ablated on area causing my urethra to be pinched   Did not go thru front but went thru rectum to do FLA for cancer in prostate and BPH procedure. Was on flomax for several yrs. Had the outpatient procedure on June 3 in Galveston Tx. UTMB.  Am peeing great now. 
    • j12080
      j12080 bobby72221

      Posted

      Bobby, that is great to hear. Did you have Walser or Karamanian do your procedure? I like them both though I feel Karamanian is much more focused on the BPH procedure as Walser is the big time Board member running that big teaching hospital and cannot be as focused. Dr. K has now opened a clinic in Houston and does nothing in Interventional Radiation but prostate issues but he does still work UTMB with Walser on IR cases. He has a clinical trial going which now helps the price paid.  Now he does a good bit of BPH FLA and has become quite the Master at it. He and Walser work together a long time on the Cancer Ablation side. His post op care is beyond good but Donny is also great as the best PA ever. 

      Really glad to hear you got the double bang for your buck. That in fact is how the IR doctors discovered that this was a very good procedure for BPH as it is accurate and focused and can go right to the problem. In treatment of cancer, they found it was stopping the symptoms of BPH. In fact, it is a lot easier when PCa is not an issue just BPH. I did mine in December of last year and Doctor Karamanian has been great with his care since the procedure. 

      Good luck

  • don30615
    don30615 vigneron

    Posted

    Hi, there:

    Several years ago, I had a consultation at Johns Hopkins with Dr. Schatz, the urologist running Hopkins' PAE study (comparing PAE and TURP results). He has recently left Hopkins for a hospital in Texas.

    I am going back to Hopkins at the end of this month, for another consultation, this time with Dr. Pavlovich. I'll be asking him for any thoughts he might have on the rmixed results of the PAE I underwent with Dr. Bagla last April as well as to find out more about two noninvasive proceeders (Uroloift and Rezum) that I've been looking into.. I will also ask him about results from the PAE study..

    I'll share what Dr. Pavlovich tells me on this site, and it would be great if you would share what you learn as well.

    All best,

    Don

     

    • richard11472
      richard11472 don30615

      Posted

      Hi Don,  How did things for with Dr. Pavlovich?  Dr. Karamanian would like me to get a fusion biopsy and he is one of the doctors at Hopkins that performs the procedure.  Would love to hear your feedback.

      Thanks, Rick

    • don30615
      don30615 richard11472

      Posted

      Hi Rick,

      I never saw him. Something came up and I had to cancel. I intended to make a new appointment but then things started to get better, and there was no real need for a second opinion. I wouldn't say the PAE procedure was resounding success--I still get up one to three times a night--but I'm pretty pleased at the moment. In my case, it took a full 5-6 months for the procedure to take effect. 

      So you've decided to go the FLA route? Why did you choose that procedure over the PAE? Sorry if we've already had this conversation! It's been a while.

      Good luck at Johns Hopkins. Would love to know what Dr. Pavlovich has to say about the Hopkins PAE study (comparing it with TURP). 

      Don

       

  • bobby72221
    bobby72221 vigneron

    Posted

    J12080.    I had Dr Walser do the Fla and bph.  Had a gleason score 6.  He removed 4 small lesions and 4 places next to urethra so I could pee. Had to pay out of pocket but would gladly do it all over again. No side effects. Took about 4 hrs outpatient. I chose Dr Walser because of his experience having done over 200 procedures.  I know he trained Dr Karamanian and have heard he is great too.  I would recommend this procedure to anyone needing cancer removed that is contained in prostate and gleason score 7 or less and bph. Having no probs. Peeing great. Did I mention that. Lol
  • vigneron
    vigneron

    Posted

    I had an appointment at Johns Hopkins in Baltimore yesterday.  It was a disappointment.  I saw a nurse, not a doctor, not even a PA.  I was told on the phone that the person I talked to would be knowledgeable about the various procedures - WRONG.  She did not even know what PAE stood for.  I was asked to fill out a questionare, give a urine sample and had a digital rectal exam.  I also had my bladder checked with a small portable Ultra Sound machine to check to see if the bladder were empty.  It was. I was told a doctor would get back in touch with me - probably via phone call.  I took with me on CD, my CT urogram along with radiologist report.  She took the report but said she did not want the CD.  I also had a CD with my recent MRI of the prostate (taken 4 days ago.  She did not want the CD and said she would call to get the radiologist report.  I gave a 17 year history of yearly PSA values and copies of my most recent urinalysis and blood tests.  I gave a LOT of data but the CD were not even downloaded into their system and did not want my copy.  Before my appointment, the waiting room only had ONE other person besides myself  - perhaps not a good sign.  At one time Hopkins had a good reputation for prostate problems but I do not have good vibes about that place now.  I will not return.
    • richard11472
      richard11472 vigneron

      Posted

      Glad I came across this discussion.  I have a call into Hopkins to see if I can schedule a fusion biopsy (Dr. K would like that to look at a place that showed on my 3T MRI---might be a shadow or might not.  I will be having the FLA once the biopsy is done.

      Another practice in the Baltimore area also offers the fusion biopsy---Chesapeake Urology.  I called and they want me to be examined by a urologist (or maybe a nurse) before they can even consider scheduling a biopsy.

      I really want the doctor to review the MRI or at least take a copy so he can review it and make a decision if a biopsy is warranted.

      I was hoping to get this done so I can head to Houston next month but it looks like this may drag out for another month or two.

      Let me know how things end up at Hopkins.  I was thinking about canceling the Chesapeake Urology appointment but they may be better than the world famous Johns Hopkins.

      Good luck, Rick

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