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Welcome to Dr. Landon Trost - Directly answering member questions in the "Medical Professionals" section below the Treatment boards. https://www.peyroniesforum.net/index.php/topic,16512.0.html

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Author Topic: Nightmare came true  (Read 1215 times)

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SW01

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Nightmare came true
« on: January 14, 2020, 04:19:05 PM »

Well had that hernia operation done. My worst thought was what if something happens. So bad I almost backed out of surgery and deal with hernia pain.

Tried my pump when swelling went down. Thought everything fine. Got 12 half pumps in and a fully soft bulb. Never happened before. I coulld tell I was inflating just not very far.

Started cursing and when I stopped about half hour later with my wife looking at me like I was crazy. Told her implant is not working any longer.

When I calmed down. I went ahead and released. Bulb filled back up. And I deflated. One more time. Pumped up about 12 half pumps started inflating and the squishy bulb. And nothing.

Issues are obviously something got punctured cut etc but I am not out of saline. Pumps up a little then deflate and can do it again.

Now thinking something got kinked and am only getting what is in the tubing.

Of course everyone knows issue. Hernia doc did nothing. It is just a big coincidence.

Has anybody ever had just tubes run down to see about kinks or do they just revise.

Meeting with my implant doc next week to see about options or any ct scan to see tubing route.

Anyone know if ct works on seeing the tubing and reservoir.
Logged
Dealt with Erectile Dysfunction, Peyronies, & venous leak for 3 yrs.
implant on March 7, 2019 w/ a Titan 18 cm plus 1cm RTE
Revision after hernia surgery. Dr. Andrew Todd, Richmond KY
Removed Titan and put in LGX 18 cm plus 2 RTE's, 20 cm total.

Hawk

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Re: Nightmare came true
« Reply #1 on: January 14, 2020, 04:51:16 PM »

Wow!  The LAST thing any of us wanted to read.  I am so sorry to hear this news and I hope that somehow it is not as final as it sounds for this implant.  See if any of these troubleshooting tips apply on the last pages of this document.  https://www.coloplastmd.com/wp-content/uploads/2018/03/Tips-Tricks-to-Ensure-Success-Titan-IPP-Pump-Guide.pdf

I don't think so but it is worth a careful read.

With considerable effort, I can pump my implant with two hands until all the fluid is moved from the reservoir to the cylinders.  At that point, the bulb depresses but does not expand and remains flat until I press on the release valve.  If your pump bulb is just going soft, it does not sound like it is just running out of fluid.  I wonder if it is sucking air instead of fluid.   That would indicate the system was punctured.

Is the inflation you are getting enough to even attempt intercourse?  I know the sick feeling because I had a moment months ago where I thought mine was done for.   In a second, I knew I would get another one as fast as possible.  Fortunately, it was nothing.

Keep us posted and we will keep you in our thoughts and prayers. 
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Pfract

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Re: Nightmare came true
« Reply #2 on: January 15, 2020, 01:51:23 PM »

Hey SW01... This is so unfortunate....   It definitely works to see how things are inside your body. Alibaba did just that, and his scan is roaming around the web somewhere.

SW01

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Re: Nightmare came true
« Reply #3 on: January 15, 2020, 07:30:44 PM »

Tried everything. Perused all forums for anything to troubleshoot. Nothing. Pumps up a little not even close for sex. About what a 2 month deflate looked like. A weak 4 o clock. No strength to it.

Not using for sex for sure.

It looks like to me by feeling around, the hernia incision is right on top of the reservoir. I can feel a tube going from my sac up into groin. Straight toward the hernia incision.

I guess options would be to see about a ct to locate tubes. See how the relate to hernia surgery. See if they are cut or crushed.

Still not sure about options. Will see urologist on tuesday who did 1st one to see. Then I guess deal with attorneys, insurance, boards, whatever to see who fixes and pays for this.

If I have go through a revision, I am hoping for 20 cm cylinders.

Might get me close to that 6.75 mark. I have to look for a silver lining somewhere.

I guess if the reservoir is toast, they might be able to do just that. Not sure though how old tubes floating around impacts that.

A few weeks will tell. Hate going through this again. 1st time was not bad. Just hate having 2nd one in a year. Good mostly 9 months though.
Logged
Dealt with Erectile Dysfunction, Peyronies, & venous leak for 3 yrs.
implant on March 7, 2019 w/ a Titan 18 cm plus 1cm RTE
Revision after hernia surgery. Dr. Andrew Todd, Richmond KY
Removed Titan and put in LGX 18 cm plus 2 RTE's, 20 cm total.

Pfract

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Re: Nightmare came true
« Reply #4 on: January 15, 2020, 07:46:49 PM »

Try to stay strong SW01... Seems like you are super on track with how you are going to address this, so there's not much more to add. I'm very curious to hear what your implant surgeon will say about this, and what could have gone wrong... Keep us posted please !

SW01

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Re: Nightmare came true
« Reply #5 on: January 15, 2020, 08:40:37 PM »

What went wrong I think that my tube to reservoir is being pushed against implant hernia mesh and doc did not pay close enough attention around that tube.

I asked about him needing a scan or something. His words were not necessary. Tubes are not anywhere close to his incision which is if not top of reservoir to damn close.

Morale of story. Do not let anyone cut into your abdomen until they know where your tubes and reservoir are and they are fing with a 70,000 dollar piece of equipment.

I should have made more clear if you have to f with the implant, leave hernia alone if there is any chance of screwing it up.

Find a doc who will listen. As much as I shopped for an implant doc. I dropped ball on this one. This one I liked to. Saved my life years ago. Had my head up my ass I guess.
Logged
Dealt with Erectile Dysfunction, Peyronies, & venous leak for 3 yrs.
implant on March 7, 2019 w/ a Titan 18 cm plus 1cm RTE
Revision after hernia surgery. Dr. Andrew Todd, Richmond KY
Removed Titan and put in LGX 18 cm plus 2 RTE's, 20 cm total.

Hawk

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Re: Nightmare came true
« Reply #6 on: January 15, 2020, 11:21:22 PM »

I know it is no time for humor but maybe you should have gotten a spinal and watched him do the surgery so you could yell STOP!

I am pretty certain they will install everything, not just a defective part even though it is pretty new.  My understanding is they typically leave the deflated bladder in and just place a new one and fill it.
Logged
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Stepone

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Re: Nightmare came true
« Reply #7 on: January 20, 2020, 10:25:14 AM »

SW01, so sorry to hear about it.

You would think after you told him, he would have been more careful.

WTF!

Prayers for a good fix

Stay in touch.
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Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

SW01

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Re: Nightmare came true
« Reply #8 on: January 31, 2020, 10:47:24 PM »

Life sure does bite you sometimes. Looks like I am going to either have to have a total revision or just repairs done.

3.5 weeks after hernia surgery. Dead in the water. Nice thing about titan is cylinders keep everything straight till I get it fixed.

I was told if I wanted since I am pretty straight that I could either get repaired with pump and reservoir or replaced with lgx. Either would be probably 20 cm. I cycled for 10 months really good and am straight so peyronies should no longer be an issue.

Still working through some issues but not sure what to do. Love the titan but wonder about the lgx.

Either way sucks doing this again and not even a year with the titan.

BUT AS I HAVE SAID. THIS THING BREAKS. GETTING IT FIXED.
Logged
Dealt with Erectile Dysfunction, Peyronies, & venous leak for 3 yrs.
implant on March 7, 2019 w/ a Titan 18 cm plus 1cm RTE
Revision after hernia surgery. Dr. Andrew Todd, Richmond KY
Removed Titan and put in LGX 18 cm plus 2 RTE's, 20 cm total.

Stepone

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Re: Nightmare came true
« Reply #9 on: February 01, 2020, 05:00:31 PM »

SWO1

I cant imagine this difficult decision. It’s like you have a chance to try another model. I don’t know what to say, but knowing what I know about Peyronie’s Disease. It seems to be unpredictable. In other words, could it cause issues down the road and would the less sturdy model be more apt to bend? I don’t know.
The other thing is if they are only replacing a few parts, that means your penis will have less trauma and less a chance of infection?
I don’t know if I have read anyone that has had an issue like this, it would be nice to here. Perhaps Hawk or you could check with Dr Eid and get his perspective?
This seems like a tough call.
I know this may seem a little inappropriate, but what about the surgeon that cut the tubing? Is this something you need to discuss with an attorney?
Be safe,
StepOne

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Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

TonySa

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Re: Nightmare came true
« Reply #10 on: February 01, 2020, 05:58:19 PM »

Everything I’ve read has said if one part fails replace everything.  But here one part was damaged.  Also, the Titan replacement might be covered...but not sure if that is only when it fails vs being damaged...
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PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

SW01

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Re: Nightmare came true
« Reply #11 on: February 01, 2020, 09:29:52 PM »

All valid points. Right now things are up in the air but all options are open. Suffice to say, I spent 30 years in law enforcement so well versed in pretty much all legal areas and how to deal with them.

Right now, I will get the ct and deal with my wife's issues. Sex is 6 months away anyway. Not that big a deal. We just passed 40 years so we are in tune for sure.

My only absolute is to say I will get this fixed. The titan got us closer so it sure has a special place in my heart.

I know there are those who would say it is just sex. Nope. It is intimacy. A sharing. A closeness. A bonding. Once gone you are friends, which is fine but lovers is better.

I wish I did not have to go down this road, but it damn sure makes for an interesting story. Or an observation. My wife and I sure as hell wish she did not go back down her road.
Logged
Dealt with Erectile Dysfunction, Peyronies, & venous leak for 3 yrs.
implant on March 7, 2019 w/ a Titan 18 cm plus 1cm RTE
Revision after hernia surgery. Dr. Andrew Todd, Richmond KY
Removed Titan and put in LGX 18 cm plus 2 RTE's, 20 cm total.

TonySa

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Re: Nightmare came true
« Reply #12 on: February 02, 2020, 10:22:36 AM »

Another consideration might be that just replacing the tubing might be a much easier recovery for you.
Logged
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

SW01

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Re: Nightmare came true
« Reply #13 on: February 05, 2020, 08:17:53 PM »

Had a ct scan yesterday ordered by my local urologist after I saw him because pain in my groin is getting worse and worse.

Ct image is Hard to tell what is what because I am not sure where everything is but reservoir looks like an empty balloon and is laying horizontally across my belly. I have also had some hard knots coming up from the skin in my groin.  Feels like tubing is pushing up and a piece of reservoir may be protruding as well. Find out tomorrow.

Needless to say pain is ramping up. I cannot ride in a car and probably not going to make a 3.5 hour car ride to original hospital surgery site. Scrunching up at all is not happening, and no seat belts for sure. Have to sit laid back or just lay in bed.

See my local urologist surgeon tomorrow for follow up ct consultation and check on the knots. Last week they were not this bad. I would say whatever happens the reservoir, tubing, and pump are probably going to have to come out soon. Just cannot put up with this nauseating pain.

No fever right now so that is good. Just pain.

Not sure what the local urologist can do but right now probably going to have to have faith in him he does what he can. If he can remove and replace probably will let him. He told me he would just pull everything out and put in a 18 cm lgx with 1 or 2 rtes. 21 might be to big a jump.

Whatever happens, as I have said before. Happy with my implant while everything was good and getting it fixed or another one.

Logged
Dealt with Erectile Dysfunction, Peyronies, & venous leak for 3 yrs.
implant on March 7, 2019 w/ a Titan 18 cm plus 1cm RTE
Revision after hernia surgery. Dr. Andrew Todd, Richmond KY
Removed Titan and put in LGX 18 cm plus 2 RTE's, 20 cm total.

Stepone

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Re: Nightmare came true
« Reply #14 on: February 06, 2020, 08:34:09 AM »

SWO1 so sorry for all you going through.
I had a shoulder problem about 15 years ago. I had surgery to fix it, it created pain, went to same doc again, he did a second surgery to fix something he missed. The pain got worse. I was in so much pain, I just wanted it fixed.
I called another doctor friend and he said DO NOT have any more surgeries until I get you to a specialist. I was able to get an emergency appointment with a surgeon for the Baltimore Orioles. This doctor told me the previous surgeon “f'~c<+d up” my shoulder and cut a nerve too.
Needless to say he did a surgery to fix things, but I would never get back what I had because of all the previous surgeries.
So what I am saying is, try to get someone to help you find another alternative than settling for a local urologist that might not know what he is getting into.
Whatever you decide, get someone to help you sort this out before you might regret it later.
I am
Praying for you buddy.
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Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

SW01

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Re: Nightmare came true
« Reply #15 on: February 06, 2020, 08:39:02 PM »

Well I had the ct done and a discussion with two surgeons. Reservoir is empty. No idea what happened really. Looks like pain is actually from another hernia. Not sure how that got missed or what happened there. So back to surgery for me, but I am going to have to have both general surgeon and the urologist surgeon both there to do there parts. So I will be doing it locally. One thing is I already have 19 cm in so might get 20 or 21 if I am lucky. Ved starting back again as well.

As much as I love my implant. I am beginning to think inserting the reservoir and tubing did cause some of my issues. No matter, am going to get it fixed.

My only issue is next time it will be a bit more invasive with 3 separate incisions, and 2 surgeons needed. Suffice to say I am getting a lot of cooperation from the medical department on how to fix this as easily as possible.

In all honesty though, I have had extensive surgery on my intestines and lower groin area years ago. I ran into a sharp pointy instrument causing all kinds of trauma.

I figured that reservoir might cause me issues. They offered a 2 piece but if I want the 3 piece they will both make sure it gets installed in all the right areas. Replace it all.
Logged
Dealt with Erectile Dysfunction, Peyronies, & venous leak for 3 yrs.
implant on March 7, 2019 w/ a Titan 18 cm plus 1cm RTE
Revision after hernia surgery. Dr. Andrew Todd, Richmond KY
Removed Titan and put in LGX 18 cm plus 2 RTE's, 20 cm total.

Pfract

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Re: Nightmare came true
« Reply #16 on: February 06, 2020, 10:29:38 PM »

Oh boy.... SW01... i am impressed with all your story so far... One thing i was going to say, that Stepone also mentioned was to do your due diligence in trying to choose the right doctor to treat you so you don't further worsen your case. You say you will be doing it locally, and i just hope it goes better for your this time. Also, i left you a quote on the other board on your post. Somebody else had a very simiilar problem to yours as far as i understood, but i am not sure you saw it. If you did, may i ask if you have tried reaching out? maybe that guy can offer some insight.
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