Self Catherization. An alternative to Turp, Greenlight, HoLEP...?

Hi Bobby, 

Thanks for this information. That's really interesting! I have a few questions:

1. Do they go through your prostate?

2. Are there risks with puncturing your prostate, for example if you have cancer, will this release cancer cells into your blood stream?

3.Where did you have this done? Are there trials in the US?

Thanks.

Greg

Hi Bobby,

Very happy that the iTind Device worked out for you! Were you part of a trial or did you have it done privately? Did insurance pay for it? Where was it done?

I just read the exclusion criteria for the trial and most of us here, including myself would be excluded either due to size of prostate, median lobe or PVR. (PVR greater than 240ml is excluded). 

You might want to open a separate thread on iTend so more can know about it. 

Jim

I just did a Google search on iTind and found information, including a YouTube video of the procedure.  Can't link it here of course.

I wish to God that I had done something different back in March of this year about to end.  My doctor pushed TURP and said also sorts of bad things could happen if I kept living with my BPH (up 3-5 times at night but never had an acute retention/blockage event).  Had I known of the Patient site and read the discussions on CIC, I might have avoided the total incontinence I live with day and night, and I wouldn't have gone to surgery three times, with more in my futre.  And my wife and I might still have the sexual part of our lives that we share.

I was a test patient in the USA clinical trial. I was assigned to Dr. Chughtai at Weill Cornell - New York Presbyterian for the screening and procedure. Call 646-962-4811 as they are looking for more patients as part of the trial. He and his staff were fantastic. Very comfortabe. Very state of the arts facility.

Maureen Reagan is the Medi-Tate co-ordinator for the USA. Super nice. Super professional. Call her to find a doctor near you. 516-669-6081. Never made me feel embarrassed or uncomfortable. answered my questions which i asked a lot of.

Medi-tate paid all expenses except travel and personal incidentals like a few minor prescriptions or underwear pads that were under $100. If you are part of the trial there is a 2/3rd chance you will get the device and a 1/3rd chance you will get a sham procedure BUT that is only a Foley Catheter being inserted and removed. I reasoned that even if I were in the control group I will at least be checked out by a top urologist in a top medical facility.

Call and go get screened. Do not eliminate yourself as you are not a doctor. They did a cancer screening on me and several ultra-sound tests as part of qualifying me for the procedure. Clinical trial patients get a very high standard of care because neither the medical company nor the doctor want any failures since the purpose is to pass the FDA tests. They will not take you unless they have a very high probability of being helped. . They will answer all of your questions. If you qualify you can alsways decide not to follow through.

Google iTind and Medi-Tate to find their website. There are several videos of the procedure being done live as well as an animation and a place to e-mail your name. .I cringed the first time I watched the videos but that is because I have never had any surgical/medical procedures except the occasional injection or blood drawing so I was a medical wimp.

They sedate you so you do not feel or remember the procedure.

They instill a numbing lubricating gel into your urethra. No needles.

They use a rigid cystoscope through your urethra to get to your prostate and bladder. There is no cutting.

They slide in a folded three wire stent made of Nitinol through the cystoscope. It looks like a small three loop whisk or egg-beater.

As the Nitinol warms to your body temperature it expands as Nitinol has a "memory" of it's designed shape. This expansion opens up the passage inside the prostate. Again, no cutting. It is just holding it open. The procedure takes 5 minutes. Recovery from sedation is almost immediate after they stop . I was out for maybe 8-10 minutes total. Then an hour of monitoring blood pressure and and heart rate and you have to be able to drink and urinate on your own. No catheter is left in. Just a string hanging out your penis which is used later to remve the device. Looks weird but not painful. Just a littel tender for the 5-7 days it is in.

The device stays in from 5 to 7 days. During that time the tissue that is in direct contact with those wires is compressed and blood and oxygen is restircted so those cells die off in a process called ischemia. Painless; like a scab falling off a cut. They pass out of your body with urine.

After the 5-7 days it is removed in a simple process that takes about 15 seconds. there is a brief "ouchie" like being stuck with a needle when you draw blood but it is over quick and then AHHHH - relief. No more urgency. Your bladder calms down. Flow comes easily. No incontinence or dribbling. I can sleep at night. Sexual function is normal.

Make the call anbd get checked out.

Good health and good luck.

 

Glenn,

I read of a fellow in your situation. His wife felt badly for him and he no longer felt like a man. Then she had to have a mastectomy and then he felt badly for her as she did not feel very feminine. There were having a real mutual pity party and grew distant from each other.

Then they went to therapy. The therapist got them to focus to what they had, not what they lost. They were "ordered" to have long make-out sessions like teenagers. He was "ordered" to become good are giving his wife oral pleasure. She was "ordered" to try giving him alternative sensations like extensive tickling and playful spankings and being more relaxed abuit being naked more often for him to enjoy looking at her body which he still did.

The result was better and more intimate communications, a sense of physical pleasure, and there were releases of endorphines and oxyticin and a whole lot of pleasure hormones. He said that he experienced extended sexual arousal and enjoyed that even though he could not ejaculate. And giving his wife pleasure made him feel much more like a man than when he had retreated from her where he felt like a monk and she felt much more like a woman in that he really still adored her body.

Bottom line is that your biggest sex organ is your brain and you can choose to focus on what you have or what you have lost. But the choice is yours to make.

Best wishes for happiness.

Thanks for posting this story. Neil

Hi Bobby, Thanks for that info. I have one question? Where you in complete retention "cannot urinate without  cic?

Thanks Bobby,

No, never in complete retention. I had an almost constant feeling  of urgency, a constant feeling of a full bladder, going up to 18 times a day (yes, I kept a record), weak steeam with a lot of dribbling at the end, stop and start of stream, minimal output (sometimes as little as 25 ml, yes, I measured), 5 trips to the bathroom at night, sometimes as little as 30 miutes between trips, so I never got enough deep sleep and was constantly falling asleep during the day.  Only once in 3 years did I sleep through the night because I had given a blood donation that day and purposefully dehudrated myself. I felt great the next morning sleepwise except for the banging headache due to dehydrating myself. I was almost to the point of asking for a Spanner Stent or a Foley for a while just so I could get some sleep.

Now all that has changed. Only up once a night but have gone up to 5 hours between trips and maybe 8 trips a day. Output volume is 150ml minimum but usually 200-250ml. Bladder has relaxed. Never any urgency. I can take long car rides or train rides. I can effectively supress the urge when it occurs and wait another 30 minutres easily.

hi Bobby, Nic to hear your feeling better. I had the very same problem as you,

Hi Bobby ,I can't understand why you have to CIC when you can do  Natural void? 

thanks,

frank

Never did CIC. Never said I did.

I had LUTS (lower unrinary tract symptoms) so volunteered for the iTind clinical trial in the USA. It is a temporary implant that was in for 6 days and then it was removed. It created 3 deep grooves in the interior of my prostate which relieved the pressure and the LUTS. Life is back to 95% normal. The trial is to see how long the relief will last. I understand that so far they are up to 5 years without having to do any repeat procedures.

Hi Bobby,

Any chance of getting a placebo treament from the trial?

Hank

Hank,

Yes, that is what makes it a trial. Control groups are an important part of scientific testing. Yes, it is a bit of a mind trip not knowing but the whole idea is not to be doing this just for yourself, but for all of the men following you. In short, I did this for my son who may be facing the same health issues that my father and uncle faced which I am facing now.

I also did this for my country. Treating BPH is mostly men over 65; men who are on Medicare. That gets expensive considering the millions of men being treated for BPH. So for every man who can avoid an expensive treatment like TURP with all of the recovery issues that can happen by replacing it with a simpler and far less expensive treatment like iTind we are all better off, aren't we? Better tratment at less cost. That is a national win-win situation.

There is a 1 in 3 chance that you will be assigned to the control group and a 2 in 3 chance of receiving the implant. Officially I do not know if I received the implant, but believe I did because the results have been amazing. Could I have been in the control group and all of this is merely a figment of my imagination? I suppose but would be shocked. I will not know until the end of the testing in a few months.

All that being in the control group means is that you will go into an ambulatiory surgical center, be given a sedative, and have a Foley catheter inserted and withdrawn that day. You will not remember the procedure and will not know what they did. Then 5 or 6 days later you go back and have the implant removed. They will not have to sedate you heavily but will give you a relaxant like Vallium and instill a local numbing gel into your urethra. No pain. There will be a privacy drape blocking your view so you will not see what they are doing. They will insert a catheter again to remove the implant real or imaginary. In a few weeks you return and get retested.

Even if yu are in the control group what did you lose? You can always go back to drug treatment or elect TURP, HoLEP, etc. But you will have been examined by the best urologists in the area, have been thoroughly screened with blood and urine tests, ultra sound tests and urine flow tests. Afterwards you will be retested to see what has changed and filled out some surveys. Not a lot to do really.

you will have been part of a cutting edge science experiment and you will feel proud. Besides, the odds of getting the implant is heavily in your favor. Much better than any casino or lottery.ticket you can buy. So I encourage you and others to step up and get screene dot see if you are a good fit for the device. The sooner it gets approved, the sooner the men in the control group can get the real implant.

Happy New Year.

Hi Bobby,Thanks for that info. Do you know if having complet retention would quailfy me as a canidate?

Thanks,

frank,

Frank,

I am not a doctor so I have no idea if you would be a good candidate for any particular treatment. That is why you need to contact the pros who will evaluate you. That is what the screening process is for. If you are not a good candidate they will certainly tell you. They do not want unsuccessful test subjects. They could never get product approval at the FDA if they did.

Maureen Reagan is the Medi-Tate co-ordinator for the USA. Super nice. Super professional. Call her to find a doctor near you. 516-669-6081.

I was assigned to Dr. Chughtai at Weill Cornell - New York Presbyterian Hospital. I live in New Jersey and took the train in to the city.for the screening and procedure. Was driven home after the procedure since I had been sedated. Very easy. You can call 646-962-4811 as they are looking for more patients as part of the trial. He and his staff were fantastic. Very comfortabe. Very state of the art facility. But all of the doctors on their list are highly rated. And this is a much easier procedure than TURP, HoLEP, REZUM, TUNA, TUMT, etc.and a much easier recovery process. So get checked out.

 

Thanks Bobby,

You sound like a swell guy, and very patriotic too boost. So am I, I like to think so. However, being chosen for a placebo would be a big disappointment I don't think I can handle. Maybe if the trial site is in San Diego I may reconsider. I am even willing to pay to get the real thing.

Also, I would think you can tell right away if you have a mock or the real thing soon after the insertion from the discomfort level. Wouldn't you think so ?

Hank

Hi Hank,

You might want to confirm this with Bobby or one of the contact numbers he gave you, but I did a little research into the trial and it is very restrictive in who it will take in terms of prostate size. Those excluded from the trial include: prostate volume is >75ml; PVR >250; median lobe; prostatitis within the last 5 years.

 

The question I would have is what is the reason for these restrictions other than the usual cherry picking. Does this procedure then work only for this limited population, or is their a humanitarian aspect to the restrictions in that one third will get a placebo?

As to the discomfort level, my understanding is that both the i-Tind and placebo group will get a rigid cystoscopy under anathesia and both will get a second cystoscopy (not sure if rigid or not) for either removal or simulated removal.

Jim

Just found out that there is another trial (Europe only) without a placebo arm per the i-Tind web site. The short-term results looked impressive but again the subjects were restricted in prostate size (here <60ml) as well as obstructive median lobe. No mention about PVR limitations. What is appealing is both the relatively non-evasive and temporary nature of the procedure. To be seen is if it's something that will help a lot of us here with larger prostates, median lobes, etc.

Jim

To me it seams like there picking the ones with the least chance to fail.  It good for a trial but not for the men with bigger prostates.  They did to try others..Ken

Hi Bobby, Thanks for that info.I hope you have a happy and healthy New year.

Thanks'frank,

Hi Jim,

I understood both of your posts re iTind except for the "humanitarian aspect to the restrictions in that one third will get a placebo?" part. Can you explain further please ?

To me, this iTind something I am willing to try even though I am doing fine with CIC because of iTind's low cost, low pain, less evasive, minimal chance of long term irreversible damage like others. This maybe what we CICers have been wisely waiting for.

But again, as you said, too much restrictions maybe a big obstacle. The PVR part I can understand. We can just keep on doing CIC until our PVRs drop below 250ml first. Again, what PVR are we talking about, day or night ? To me, there a big difference there.

Hank

Hi Hank,

Regarding PVRs, etc, youshould go to the iTind site and check out the exclusion criteria for the trial or even better call one of the coordinators and go over it with them. I do agree that the iTind concept is intriguing for the reasons you mention with the exception of having a 30% chance of getting a placebo procedure. What I meant by "humanitarian" is that some trials will not subject subjects to certain risks and/or will end a placebo arm if new data shows the trial arm is performing well. In the case of iTend, the risk to someone with a high PVR, for example, might be kidney damage, therefore the exclusion from the trial. This is really just speculation, however, and the actual reason may simply be cherry picking for better results or perhaps the device just doesn't work for certain size prostates. Again, questions to pose to the trial coordinator. 

Jim

 

Hi Jim.regarding the PVR,Is this the amount of urine output?I'm in complete retention,does my cic  output refer to PVR?

Thanks 

frank,

I'm not exactly sure if the term "PVR" (post void residual) applies to someone in complete retention since you don't really void. 

Jim

Thanks Jim for the explanation. I am not going to pursue the trial further due to two reasons: 1. possibility of a placebo. 2. it is in NY, too far for me. I will wait for the approval if it ever comes.

Hank

Bobby,  sounds like me for many years.  Always looking for a restroom, and going to the toilet constantly.  Now with CIC, I can go for hours without a trip to the restroom.  It's the best!