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Author Topic: Waveboy's journey in getting am implant.  (Read 3253 times)

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Waveboy

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Re: Waveboy's journey in getting am implant.
« Reply #50 on: November 26, 2021, 06:31:34 PM »

Hey Hawk and tks.

So girth is not fully back but cant measure it correctly either, due to still have some questionable swelling on dorsal side of penis. still puffy.

inflated I'm aiming 2-3.

getting better with full deflation so its been at 3. Yesterday I achieved full deflation where if felt cylinders collapsed and its starting to aim about 4. Still tucking it up or rotating side to side while in underwear. Not aiming it down even in deflated.
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48 yrs old
Factor VIII Hemophilia
4x inguinal hernia repairs, one w/mesh
Lifelong History of Erectile Dysfunction and 3yr Hx of Peyronies Disease - Meds stopped working
Peyronies diagnosis 2/2021
AMS 700 CX IPP 10/4/2021/ Dr. Rafael Carrion @USF Tampa

Waveboy

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Re: Waveboy's journey in getting am implant.
« Reply #51 on: December 08, 2021, 07:29:53 PM »

Ok I have a question to anyone out there as far as the ams 700. To whom has one or had one. So I am scheduled to go back to see my doctor the end of this month.
When I went 3 weeks ago for what I thought would be my last follow up. The doctor was going to show me how to cycle. I have been unable to cycle for 6-7 weeks post op due to still healing surgery site on penis. So my last post I went over my visit on how when I compressed the bulb it stayed down on 1st pump. It happened in doctors office and he said that was weird moved pump around and it opened back up. Well it happened again as soon as I got home. I moved pump around and about 15 mins later it opened back up. I waited about 30 mins again and it let me pump then. So 5 days pass with cycling twice a day and then in the evening I went to cycle and bulb compressed and stayed down on 1st pump again. My wife and I looked up on the internet and found how to hold and press on pump and it will reset and inflate bulb back up. Well that worked! It inflated and it says you feel a click on first squeeze, which I had felt one time before but not each time I started cycling. So I went for squeeze and bulb stayed down again. Now aggrevation set in. After 10 times resetting and pumping and resetting I finally gave up for the night. Woke up the next morning gave it a good squeeze and I felt the click! and I was able to cycle! So 5 days went by bulb compressed about 4 other times but reset fixed and I was able to pump. This went on for another week. Then finally got to the day where I could spend time with my wife and then. Bulb compressed again and reset brought it back and kept compressing  and reset would make bulb come up. This went on for an hour needless to say go everyone out of the mood! So has anyone had this issue and how did they resolve it?

Question 2.  I do not get the click everytime I start to cycle and I give the first squeeze a good one. Is this good or bad?

Question 3. With cycling I can get up to 12 great pumps now then the bulb is so tight I can squeeze even with 2 hand grip. I wait 2 mins and I can get another pump  but then bulb tight again. cyclinders are tight but not at full potential because I still have movement of skin on penis shaft. I am not feeling the pain in penis when inflated like others are saying they feel when cycling for it to stretch back to normal. I pump all I can pump, the bulb isnt compressed it just doesnt feel as inflated as in the first 10-12 pumps. Is this a normal thing and just takes time?

Last Question. When deflated I know I have squeezed all of it out cause cylinder are flat when Let penis go. But then the left cylinder will slowly inflate to about 30% and penis lays to the right. I squeeze fluid back out and 10 mins later back again. I aim it to the left, but with moving around it shifts back to the right and left cylinder has inflated again. I have tried giving it a couple pumps to stop the auto fill. most of the time that works but I am pointing straight out then. As far as positioning I can flacid aim down to about 4 maybe 5 oclock but if it auto fills or if I pump couple pump to stop auto fill its aiming out at 3 or have to aim straight up.

I know this is a lot of ?s but I am just trying to understand more so I dont get this lost look from the doctor or a just give it time.

waveboy out!
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48 yrs old
Factor VIII Hemophilia
4x inguinal hernia repairs, one w/mesh
Lifelong History of Erectile Dysfunction and 3yr Hx of Peyronies Disease - Meds stopped working
Peyronies diagnosis 2/2021
AMS 700 CX IPP 10/4/2021/ Dr. Rafael Carrion @USF Tampa

Hawk

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Re: Waveboy's journey in getting am implant.
« Reply #52 on: December 10, 2021, 12:17:05 AM »

Those are great questions and a very good post.  I hope an AMS guy will jump in and respond but they are in the minority.  All AMS pumps should be the same however even if they do not have an LGX700. If you do not get this resolved then I could suggest a list of specific questions for the surgeon on the next visit.

A couple of observations;
if you totally deflate and pump twice to reduce the chance of reinflation there is NO way two pumps should hardly register on your penis much less make you point straight out.
Any time a pump remains depressed, it is always because it cannot refill with fluid for whatever reason, (tubing pinched, reservoir out of fluid, etc)


Questions: 
Have you had intercourse?
in any case is it rigid enough for intercourse
What is your assessment of the size when fully pumped? (compared to before surgery)
Can you manually bend your penis when fully inflated?

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Hawk - Updated 10/27/18 - Peyronies Society Forums

Hawk

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Re: Waveboy's journey in getting am implant.
« Reply #53 on: December 10, 2021, 12:29:06 AM »

The following men have AMS implants and are still reasonably active on the forum:
SW01
Tomas
Pichou

I might be missing some.
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tomas1

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Re: Waveboy's journey in getting am implant.
« Reply #54 on: December 10, 2021, 03:19:19 PM »

I can't say I experience most of your issues with my AMS pump.

I never hear or even feel a click when cycling the pump.

I think it's normal to be able to get another pump in when fully inflated, but on the next pump the pump is hard.
I don't really think the first extra pump does anything, at least in my case.

My pump never goes flat

I never feel discomfort after pumping to the maximum.

I don't bother to squeeze everything out of the cylinders, but I also hang naturally after depressing the deflate button.

Bottom line is I'd GUESS that your pump is defecti8ve.
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Waveboy

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Re: Waveboy's journey in getting am implant.
« Reply #55 on: December 14, 2021, 05:47:48 PM »

thanks again hawk and tomas for responding back. Sorry for not responding until now.

so to answer some ?s. The only time I have been able to try and have sex was one of the nights the bulb compressed and I pressed reset button and it kept compressing and this went on for about 30 mins. Kinda put things out of the mood. So not true sex yet. It will pump up and stay hard when I can pump it up.

So as far as will it get hard enough for sex yes. As far as size, girth not completely but not far off. Length is the issue. So before surgery and before I knew about pressing down to pubic bone to measure. I just measured from base of penis with a full hard on to tip of head and it was 6.5 inches. Now with all the pumps I can get to which the most has been 20 full pumps I am measureing 4.5 inches. I just question when they say they put a 21cm plus one rte which is 2cm thats 9 inches. I can comprehend that 4.5 inches is in my body or why I was 6.5 before now 4.5. Dont know?

Thomas as far as the click, the only time I have felt it click is after I hit the reset after bulp compresses and doesnt open. Outside from that it doesnt click.

As far as hanging naturally. If I deflate and dont squeeze  it finally started hanging alittle naturally but in about an hour the left cylinder will start filling up on its on and point to the right. so about every 3-4 hour when I go pee I squeeze it down again. Hawk I tried giving it 2-3 pumps to stop the autofill its just taking longer to autofill.
So I have just adjust life with that.

I am still cycling 2-3 time a day. atleast 20 mins. And I try to get a 30-40 min one as I am going to bed. Yes tomas I am not getting the painful erection while cycling. Thankful for that. Just hope that things are going right.

Last question Hawk can I bend it when fully erect. When I get all the pumps I can do. I can hold the base and bend in all directions with some effort but I hold base so it doesnt make rte loose. Dont know if that helps stretch cylinders or not. I dont do that much.

So My wife and I have a message out to the sales rep for ams implants. To ask him about pumps. Trying to talk to him before I go to see Dr Carrion Dec 28th.

waveboy out
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48 yrs old
Factor VIII Hemophilia
4x inguinal hernia repairs, one w/mesh
Lifelong History of Erectile Dysfunction and 3yr Hx of Peyronies Disease - Meds stopped working
Peyronies diagnosis 2/2021
AMS 700 CX IPP 10/4/2021/ Dr. Rafael Carrion @USF Tampa

Hawk

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Re: Waveboy's journey in getting am implant.
« Reply #56 on: December 14, 2021, 10:49:21 PM »

Waveboy, not having great discomfort after being inflated for 30-40 minutes is NOT something to be grateful for.  That discomfort means that you are stretching and regaining size.  It is the sign that you will be bigger in a month than you are now.

I hate to say this, but I suspect something is not right with either your pump (defective) or the tubes leading t the pump (crimp or kink).

It is beyond my experience and understanding to explain how all of the following can be true.
1. The tips of the implant extent at least 1/3 of the length into your glans. (suggests you were not undersized)
2. Totally inflated you feel no discomfort and your penis is considerably shorter than before the implant (suggests you were undersized or you are not totally inflating)
3. You pump until the pump bulb gets too hard to pump even with two hands (suggests you are not under inflating)
4. You are only getting a 4.5" length from 23 cm of implant and RTE (this suggests you must be under inflating) (I have 21 cm of implant and have 6.75" - 7")
5. You feel no discomfort when inflated for 30 minutes (suggests you are undersized or not fully inflating)
6. You pump bulb dents and does not refill (proof it is not getting fluid due to lack of fluid in the system or obstruction)

You begin to see the dilemma.  The two of you have to do what you excel at.  That is, making noise until this is resolved.

You also need to force some stretch of the reservoir capsule by forcing it to retain fluid.  If need be, Coban wrap your penis, or you will have auto inflation for the implant's life.
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LightAtTheEndOfTheTunnel

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Re: Waveboy's journey in getting am implant.
« Reply #57 on: December 15, 2021, 12:04:12 AM »

So you can actually physically feel the cylinder tips in your glans? Most of you who have gotten implants say that it feels completely natural especially when erect, other than the pump obviously. You’ve made it sound as if you wouldn’t be able to tell the different between an erect penis with an implant and one without one. How is that possible if you are able to feel a hard foreign substance in your penis when touching it?
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Hawk

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Re: Waveboy's journey in getting am implant.
« Reply #58 on: December 15, 2021, 01:07:05 AM »

It takes some deliberate effort and knowing what you are looking for.  It also cannot be done if you are aroused and get some natural glans engorgement when aroused.

If your glans is not engorged and you are inflated and probe the glans feeling for the tips you can find them.  Neither the man or a partner would ever happen across them.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
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TheBoykinLady

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Re: Waveboy's journey in getting am implant.
« Reply #59 on: December 15, 2021, 08:17:56 PM »

"You begin to see the dilemma.  The two of you have to do what you excel at.  That is, making noise until this is resolved."
I'm changing my username to Karen because I'm going to need to speak to the manager Hawk! ;) LMAO

I also have suspected a pump issue for a while. They are going to be so happy to see us go when this is finally resolved. And it will be resolved but dang, I hate it for my hubs because we will insist on a whole new implant.

I reached out to Boston Scientific on Monday and a Rep called him back today. In fact, the rep said he was Dr. Carrion's rep so that's good. I think he needs to be there for the appointment on the 28th.

Also, what is the timeline here for permanent scarring in of a defective implant?
I can't find any specifics on malfunction percentages. If anyone has them, please share.
Thanks friends!
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I'm looking for answers but am happy to answer any questions you may have.

Hawk

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Re: Waveboy's journey in getting am implant.
« Reply #60 on: December 15, 2021, 08:45:56 PM »

BoikinLady,

Personally, I would subtly let the rep know you have been on a major Erectile Dysfunction / Peyronies Disease forum trying to get input on these issues.  I think they will make a greater effort to see the story has a quick and successful ending.

I doubt that he will need another implant even with a worst-case scenario.  I would hope that the most he will need is a scrotal incision to replace a pump or correct the tubing routing.  Honestly, I think he can stretch to near his same potential, but it will take longer than if cycling began right after the implant.  His gains could slowly extend over two years.


In the unlikely event, there is any discussion of a total replacement I would then ask about the Boston Scientific LGX 700 arguing that it will help him with length restoration.  They might adequately counter-argue but I would raise the issue.
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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

TheBoykinLady

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Re: Waveboy's journey in getting am implant.
« Reply #61 on: December 16, 2021, 09:43:22 PM »

Thanks Hawk,

If I understand correctly, current research shows an increase in infection rates(2.5-6%) when a partial revision is done, for any reason?? I think that's why we question not doing a whole new IPP.

Let me ask you all this question: If you had plicatation/penoplasty/reconstruction and IPP, which procedure was performed first?
The reason I ask is, if you have plaque/curvature causing the penis to be drawn closer to the body, shouldn't the cylinder measurements be taken AFTER any reconstruction is performed and penis is "freed" from any deformity, to get a more accurate measurement?

The reason I ask is, Hubs actually has more of the cylinder length internally (13cm) than externally(11cm) and has not gained any weight in the last 2 years, since Peyronies Disease began. He is not close to pre-op BPL(6.5"), even with a pre-op partial erection. He also has a fair amount of loose skin on the shaft of his penis when fully inflated.

Given these values, he is measuring BPL now @ 4.5 inches. (11cm=4.3") If I am correct, he has no room for gains and it would explain all the lack of pain during cycling and loose skin? Am I wrong in this line of thinking and calculations?

The cylinder tips extend properly 3/4 into the glans, so I wonder if order of procedure has a causal effect on post-op length.

The Boston Scientific rep has been in touch with Hubs today, after another stuck bulb event during cycling. He is going to try to get a 'local to us' Rep to see Hubs before the f/u visit on 12/28.

I will definitely have Hubs mention the Forum, great idea Hawk!

Until next time....thank you all!
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48yo wife of Erectile Dysfunction and Peyronie's patient with hemophilia (waveboy).
I'm looking for answers but am happy to answer any questions you may have.

Hawk

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Re: Waveboy's journey in getting am implant.
« Reply #62 on: December 16, 2021, 11:02:33 PM »

Thanks, Hawk,

If I understand correctly, current research shows an increase in infection rates(2.5-6%) when a partial revision is done, for any reason?? I think that's why we question not doing a whole new IPP.

It's possible you know something I don't (which would not surprise me in the least), but I never saw stats that indicate the incidence of infection is greater with a partial replacement than it would be if you went on to replace more components.  Applying common sense that seems impossible, but maybe there is that one missing factoid I don't know that suddenly causes it to make sense. 

I admit to being more confused by Waveboy's stats than any I have run into.  Part of the problem is that the two of you have nothing to compare to, or you would know if he is approaching full inflation.  From a distance, with only verbal input, I am guessing he has never reached full inflation.  This is why.
1. He feels no stretch or discomfort.  That means he is undersized, impervious to discomfort/pain, or not inflating.  His reports of the tips extending well into the glans would rule out being undersized.
2. Because his pump gets hard might not mean he is totally inflated since the pump is acting glitchy.
3. I am 5'8" 160lb.  I measure a minimum of 6 3/4" with a BPEL with a 22cm implant.  That means roughly 5cm is placed deeper than my pubic bone.  Bone Pressed does not change with weight gain/loss. That is why it is used.  Everyone is different, but I do not believe any man of any size could have double that number.

Fully inflated at midshaft (even if he was undersized), his penis should be unbendable. While it will feel natural, no man could have a more firm shaft at any age under any circumstances.  If that is not the case, he is NOT fully inflated.

The confusing part is that with his model implant, even deflated, the penis length should be less than an inch shorter than fully inflated. This is because only the LGX expands significantly in length during inflation.  All other implants increase mostly in girth.

The local rep or even another guy with an implant should know if he is totally inflated in a minute or less.
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Hawk - Updated 10/27/18 - Peyronies Society Forums

Hawk

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Re: Waveboy's journey in getting am implant.
« Reply #63 on: December 17, 2021, 09:21:31 AM »

To the Dynamic Duo - I am going to repeat myself because I am still perplexed over this and I want to re-express myself in slightly different terms.

1. My gut just tells me that a doctor of his experience would not likely undersize a patient.
2. The size of your implant tells me you are probably not undersized
3. The position of the tips within the glans tells me you can't be undersized.

All combined plus the fact that you have clear pump issues suggest that you have never fully inflated and that you can't be undersized.

                                                   BUT

The fact that your deflated length is not over 5" tells me you are undersized.

Obviously, both of these cannot be correct.

_______________________________________
Let me ask you all this question: If you had plicatation/penoplasty/reconstruction and IPP, which procedure was performed first?
The reason I ask is, if you have plaque/curvature causing the penis to be drawn closer to the body, shouldn't the cylinder measurements be taken AFTER any reconstruction is performed and penis is "freed" from any deformity, to get a more accurate measurement?

I think different surgeons proceed differently and they would likely alter their pattern depending on the case.  I do not think that order matters.  If it did, I would have to think a surgeon with his skill surely would know that.  Most likely excision and grafting would be completed first.  In my case, Dr. Eid evaluated slight curvature after initial inflation and made relief incisions in one side of the base of my shaft before closing.  In any case, I want to exclaim in puzzlement, "The man has 24cm of implant.  He should have more than a 5" Bone-pressed penis when deflated and at minimum a 6" bone-pressed penis when inflated.  If not, you could feel bent and crimped cylinders upon inflation because they could not straighten out."

Furthermore, no man should lose size with an implant from a skilled surgeon

You guys are the best and I know you will have victory before this is over.

PS: It's a dumb question but can there be ANY chance you are wrong about the implant size?

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TheBoykinLady

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Re: Waveboy's journey in getting am implant.
« Reply #64 on: December 21, 2021, 12:28:54 AM »

Hawk, I am just as perplexed as you and also sorry I haven't been back on to discuss.

One thing to note is -on the OP note it says Dr. Carrion was there for 'Critical' OR parts. The way the note reads is that Hub's IPP was actually done by a Dr. Buscaino, assisted by a Dr. Juwono. I am not happy about this revelation. USF is a teaching hospital and I know doc's have to learn but I don't feel like we were told the truth at our consult or in pre-op. I don't know anything about these other 2 physicians except Juwono dictated everything and Busciano was the first MD he saw when he went to see Carrion the first time, back in August. She knew he wanted Carrion because he refused to see her.

From my nursing POV, it looks like Busciano did the penoplasty and IPP with Juwono assisting. Carrion was in another OR, or close by to assist, if needed.

So here we are now..

Deflated he is 3.75 inches. Inflated he is 4.75 inches. He measured again tonight as you suggested, before and after cycling.

I don't understand how a 23cm IPP (I double checked the OP note) only gives him 4.75 inches externally. I am dumbfounded, unless they implanted too deep(to the pelvic bone)?  Could that be the cause of the raging hemorrhoids post-op?  I wonder how far into the abdominal cavity the Buck's fascia extends, on average? Unfortunately, I am not finding any answers to my questions online >:( The only thing on Brooks Dilator problems is from 2008 but it's enlightening. I have a million questions here.

https://www.hindawi.com/journals/au/2008/573560/

The only chance of measurements being wrong is from the hospital OP note( same one I emailed you). I quoted what they measured and converted to inches. I don't understand how/why they would do a 13cm Crus capsule, then leaving 11cm externally. I understand the need for stability but that's a heck of a base since it will eventually scar in where ever they place it. (Again, I am assuming from my ortho nursing days) I could be way off here but scar tissue is scar tissue.

Let's look at it this way...IF he were sized properly and a pump malfunction wasn't in question, there should be very little to no loose skin on the shaft when/if he was fully inflated, correct? I understand that after implantation it takes time to reach max size. That's only going to happen with stretching of the Tunica albuginea, which he obviously hasn't been able to do if there is no discomfort.

Going back to your message above-
1. We now know Carrion didn't actually do the IPP
2. I agree, except for the 13cm internally vs 11cm externally?
3. I agree.

BUT

We cannot feel crumpled cylinders after inflation.

However

Given the pump issue and the fact he is nowhere close to an average 23cm IPP length, something is amiss.

Taking all of that into consideration, I think this needs be addressed ASAP because he is scarring in more everyday, making whatever needs to be corrected more involved.

NONE of this makes sense to me but rest assured, I'm going on the 28th to find out!
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48yo wife of Erectile Dysfunction and Peyronie's patient with hemophilia (waveboy).
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tomas1

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Re: Waveboy's journey in getting am implant.
« Reply #65 on: December 21, 2021, 02:07:51 PM »

I'd suggest you contact Jamie Matson at AMS to confirm what was implanted.
I suppose she may have given false information, but I hope not.
Sorry you and your hubs have to deal with this.
I have Jamie's email address if you need it?
Found it, it's:
[email protected]
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83 years old.
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18cm AMS 700 CX, 3.5cm RTE 100cc reservoir
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Re: Waveboy's journey in getting am implant.
« Reply #66 on: December 21, 2021, 07:59:02 PM »

@tomas1 thank you very much!

We have asked repeatedly for Hub's info card, for his implant, and have not received it yet. I have serial numbers for everything but the pump, from the OP note. I will definitely reach out to Jamie to try and figure this out.

Many thanks.
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Hawk

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Re: Waveboy's journey in getting am implant.
« Reply #67 on: December 21, 2021, 08:03:50 PM »

I am dumbfounded, unless they implanted too deep(to the pelvic bone)?  Could that be the cause of the raging hemorrhoids post-op?  I wonder how far into the abdominal cavity the Buck's fascia extends, on average? Unfortunately, I am not finding any answers to my questions online >:( The only thing on Brooks Dilator problems is from 2008 but it's enlightening. I have a million questions here.

https://www.hindawi.com/journals/au/2008/573560/

A couple of points that probably only add to our confusion.  I don't think they have options on how deep they implant the base into the crus.  What they do is measure distally and proximally and add the numbers to determine the length of the implant.  There seems to be no way to reconcile that the implant is not filling the proximal length when the tips are well into the glans.  That cannot happen if he is shorted on cylinder length.  We have to conclude he has a 23 CM implant extending from the crus into his glans.  They could not possibly extend it further.
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After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
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tomas1

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Re: Waveboy's journey in getting am implant.
« Reply #68 on: December 22, 2021, 08:29:16 AM »

I can't quite remember, but I believe Jamie emailed the surgical notes to me. The report shows everything done about measuring and the equipment used.

It seems to be a mystery how the implant can go into the glans, but not end up with more length unless something was done wrong, or the wrong implant was used?
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Implanted 01/22/19 by Dr Avila.
18cm AMS 700 CX, 3.5cm RTE 100cc reservoir
Diagnosed with Gleason  6 prostate cancer.
Monitoring it for now.

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Re: Waveboy's journey in getting am implant.
« Reply #69 on: December 22, 2021, 12:17:36 PM »

I can't quite remember, but I believe Jamie emailed the surgical notes to me. The report shows everything done about measuring and the equipment used.

GREAT POINT! 

I might be wrong but it seems Waveboy and TheBoykinLady did get the surgical notes.  It is a fact that the full surgical notes should include the measurements both proximally and distally.  I think it is well worth looking for those numbers.
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After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Waveboy

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Re: Waveboy's journey in getting am implant.
« Reply #70 on: January 01, 2022, 09:40:35 PM »

Hello waveboy again. Thanks Hawk and tomas for the question about surgical notes. I did receive them and yes it is 21 cm with one 2cm RTE, bilaterally.

So, the boykin lady and I went back to the surgeon this past Tuesday. We went over the problems I was having and question's about length and pump issues being compressed. The surgeon stated he had not heard of those issues with the pump and auto filling just on one side. Surgeon said none of those problems added up and he didn't understand. He said none of his patients had had hemorrhoid issues or pudental nerve issues either. He did agree that the pump was high and that was an easy fix. He stated that it would take time for me to get up to full size, like close to a year. He said he made decision to use ams cx 700 due to the implant size. He stated he had both types of implants on the table and the malleable. He chose the 700cx because the LGX, at that length, was not rigid enough inflated and the Titan would be easier given my hemophilia, since the diameter of the cylinders expand and could cause further clotting issues early on.

As for as fixing problems surgeon stated that he wasn't going to go back in to do anything until after couple months to see if issues worked out, seeing as they were not making sense to him. As far as the pump staying compressed he suggested, once I deflate completely to pump 2-3 pumps and leave it alone. Then note if there is anymore bulb compression. As far as one cylinder inflating surgeon said see if it does it with you pumped 2-3 times and that penis always pointing to the right might just be my resting flacid angle. Surgeon ask me if I was cycling twice a day for 1 hour each time and I said I could get the hour at night but not in the am. That was more like 20 minutes. Surgeon said since I was not in pain when fully inflated to inflate at night and leave it inflated til the am and that would maybe help it stretch it more and faster. He stated that 23 cm was more than average and generous. He stated that things would just take time and over that time that I would be able to get more pumps in as it stretches. He ordered a pelvic CT to make sure everything was placed correctly, so I will get that sometime this month. He wanted to follow up in 3 months but the boykin lady will handle that this coming week.

So, I left the office trying to look at the positive side of things and not be aggravated. So thankfully I am not a stomach sleeper. Since I saw the surgeon on Jan 28th each night I have been inflating to max and going to sleep. So on average its been 6-7 hours each night. In the am I deflate and put 2-3 pumps in and go throughout my day. I still get some auto inflate in left cylinder and every 3-4 hours when I go pee I deflate and put 2-3 pumps to get penis positioned where it is not noticeable when I am at work. I cant really say things have made a difference because its only been 5 days. I haven't had any issues of bulb staying compressed until this afternoon after a nap. I had just inflated for about 20 mins then deflated and hit the bulb and it stayed compressed and I started to get mad about it, but after 2 resets on the bulb valve switched and I got 2-3 pumps in. Hoping that it was just a one time thing. The only difference with deflation over the last 5 days was I did it laying down and probably deflated even more. I don't know but I will start keeping chart on that.

Thanks
Til next post
waveboy out!
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48 yrs old
Factor VIII Hemophilia
4x inguinal hernia repairs, one w/mesh
Lifelong History of Erectile Dysfunction and 3yr Hx of Peyronies Disease - Meds stopped working
Peyronies diagnosis 2/2021
AMS 700 CX IPP 10/4/2021/ Dr. Rafael Carrion @USF Tampa

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Re: Waveboy's journey in getting am implant.
« Reply #71 on: January 02, 2022, 12:47:28 AM »

Waveboy thanks for the thorough update.  I am almost glad to hear the doctor say things were not making sense to him because they definitely are not making sense to me.  I was beginning to question my understanding of this entire process.

I am hoping that the issues with the pump are an issue of some fluke that will work itself out as the pump gets broken in. 

His logic for his choice of implant (whether right or wrong) at least sounds like it has a basis in logic.

I am still utterly baffled by the implant size vs the penis size but maybe you will ultimately be able to get in more pumps as the pump gets broken in.  Maybe then things will start to respond as we would expect with more pumps, a feeling of tightness, and stretching, larger penis measurement.

Question: Have you been able to have intercourse?  If so, any change with PE?  If not, is it because of lack of firm inflation, size, or what?

I am rooting for you and hope you come through this 100% satisfied with the outcome my friend
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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

tomas1

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Re: Waveboy's journey in getting am implant.
« Reply #72 on: January 02, 2022, 12:48:03 PM »

I'm also wondering about the penis size/implant size variation.
I'm no more than 1/2" different between flaccid and erect.

My surgeon said a similar thing about choice of the CX.
He won't implant the LGX when cylinders are 18CM or greater.

I also wonder why just one cylinder auto-inflates?
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83 years old.
Implanted 01/22/19 by Dr Avila.
18cm AMS 700 CX, 3.5cm RTE 100cc reservoir
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Re: Waveboy's journey in getting am implant.
« Reply #73 on: January 02, 2022, 08:18:14 PM »

Waveboy back again. Thanks for the follow up hawk and tomas.

Tomas about the LGX I still questioned surgeon again but he came back in room and said the walls of the implant on the LGX were not as strong and would end up folding, over time, due to length so I finally accepted that. I'm just left questioning where my length is and will I eventually get it back.

Hawk, I was glad everyone was just as confused as I was. All I can do is follow things along. At least my penis is mostly straight and can be used. Just praying that things will work out. Learning more about where equipment is placed has helped. So, where the cables are attached to the cylinders is right where my scar is infra pubic. I can feel the cables ( I call them cables but the tubes) run down the right side along with the one from the reservoir.

So to your question hawk about intercourse. We tried about 3-4 weeks ago and pump had issues right as we started so that was a wash out. We have had company at our house for last 3 weeks. Hoping after holidays and everyone is gone nexr week, our house hold gets back to normal.It's hard enough to carve out time with a home schooled 13yo.

About the PE who knows i'm just glad it will stay hard afterwards.

I will keep updating as things happen.

waveboy out
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48 yrs old
Factor VIII Hemophilia
4x inguinal hernia repairs, one w/mesh
Lifelong History of Erectile Dysfunction and 3yr Hx of Peyronies Disease - Meds stopped working
Peyronies diagnosis 2/2021
AMS 700 CX IPP 10/4/2021/ Dr. Rafael Carrion @USF Tampa

Stepone

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Re: Waveboy's journey in getting am implant.
« Reply #74 on: January 04, 2022, 05:44:32 AM »

I have been reading all this and am also confused.
I have several questions
1. When you pump, are you pumping until you can’t handle the pain anymore?
2. How many pumps does it take to pump your penis to maximum? Meaning you can’t pump any more because the pump becomes impossible to press.
3. I am not judging, but sex is an important thing to many relationships. Have you thought of scheduling a day and time to have sex?
4. My pump was so tight against my penis, it was difficult to pump at first without pain. Overtime, the pump loosened up and the pain went away. Are you experiencing pain at your penis when you use the pump?
I am truly sorry you are going through this. But hopefully we can get some clarity and help determine what could be a problem.
Best wishes,
StepOne
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Waveboy

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Re: Waveboy's journey in getting am implant.
« Reply #75 on: January 04, 2022, 09:17:28 PM »

Hey Stepone.

Yes it is confusing, I am a very observant person. Working in the medical field has made me even more that way. Boykin lady and myself read lots on this forum before my decision and understand what people were going through. So when I had the implant I was running all this through my head of what to expect. When I started cycling I was looking, waiting, and expecting, all things even the dreaded pain.
When the  pump started to act up, I really started taking notes. No one had heard of these things even the doc and the sales rep, or they trying everything to avoid it, saying its the mechanics of the pump or the placements from the surgeons. I don't know. I do know it is happening. I'm not saying people don't believe me. I am hoping once I get it all fixed this will help someone else. If something like this happens to others, I hope they do not accept it and think this is how it is supposed to be. Not wanting anyone to look down on getting a IPP. Yes it sucks that I am going through this and it will get fixed.

Alright then. So stepone as far as your ?s

1. When I pump I feel no pain and haven't since I was released to pump at 6 weeks post-op. I feel cylinders tighten and tips are in 2/3rds of the glands of the penis. Only once have I pumped and felt like I have a really stiff one like I did in my twenties.
2. Number of pumps. I get anywhere from 18 to 25 full pumps (all depends how much auto inflate was in cylinders after deflation) that the bulb is completely compressed. Then the bulb is full and I can't compress it anymore. Sometimes I am able to get another single pump 5-10 minutes later, but then pump solid again. Each time it gets to that point I am pulling down on pump and moving all around to try to get another pump, which was suggested to me by the Boston Scientific rep and surgeon.
3. I know your not judging, sex has always been important in boykin lady and my marriage. Can't schedule it when your job is playing catch up from all the shutdowns from covid, which now has me working 60+ hours a week, especially since I was out for 6 weeks post-op. Then you add on that my pump is still screwing up each time we have tried to have an evening, after you spend 45 mins trying to get pump to work everyone is out of the mood. Holidays, family in from out of state, and a 13yo son that is home schooled. Not much time left in the day until at least next week. Family leaves this weekend....
4.The only pain I feel with the pump is where they placed it too high in my scrotum and the bulb being partially attached to the skin (small area)inside of my scrotum and I can't separate it. Surgeon was NOT concerned about infection after exam last week.

To conclude I know this is confusing as HELL! But these events are happening. Hoping things work out soon. Will have CT of pelvic region within the next 2 weeks.

for now waveboy out
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48 yrs old
Factor VIII Hemophilia
4x inguinal hernia repairs, one w/mesh
Lifelong History of Erectile Dysfunction and 3yr Hx of Peyronies Disease - Meds stopped working
Peyronies diagnosis 2/2021
AMS 700 CX IPP 10/4/2021/ Dr. Rafael Carrion @USF Tampa

TheBoykinLady

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Re: Waveboy's journey in getting am implant.
« Reply #76 on: January 16, 2022, 09:36:36 PM »

I have a few questions for you guys, if you would indulge me?

Waveboy is super frustrated because none of this is making sense to either of us and he is rather upset lately. Rightly so, may I add.
 

1. At what point, post-op, could you or your partner NOT feel the tubing just above and beside the penis without really trying?

2. Today was the first time he inflated fully and had any discomfort. It was very mild. Could this finally be the beginning of the "Tunica albugenea rehab" or just an off day? It happened with a normal amount of pumps he said.

3. When he saw Dr. Carrion last, he wanted to wait 3 months to figure out and address all issues at once, if he had to go back to surgery. I understand that due to Waveboy's hemophilia. However, isn't Waveboy sacrificing size and building more scar tissue if he waits that long since there is no discomfort upon inflating? (Aside from today)

4. After 3 months, could you bend your uninflated penis down to urinate? Could this be due to the plaque at the ventral base of his penis though? He had no issues bending pre-op.

5. At this point, he is pretty much inflated all night (every night), at least 2X/ day, and sometimes during a weekend nap. Given this extended time, should erosion be considered and total inflation time be decreased?

6. Is it possible (and I'm reaching here) that the top ventral plaque that was not addressed, is preventing full inflation? The reason I ask is he has limited range of motion trying to urinate. It kind of makes me wonder if it has something to do with his shorter than pre-op anticipated length, given his implant size.

His CT is scheduled for tomorrow so hopefully we'll have some answers to something soon.

Thanks everyone!
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I'm looking for answers but am happy to answer any questions you may have.

tomas1

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Re: Waveboy's journey in getting am implant.
« Reply #77 on: January 18, 2022, 09:43:34 AM »

I can't answer any of your questions, but I hope you guys get some answers from the scan.
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83 years old.
Implanted 01/22/19 by Dr Avila.
18cm AMS 700 CX, 3.5cm RTE 100cc reservoir
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Re: Waveboy's journey in getting am implant.
« Reply #78 on: January 18, 2022, 10:11:27 PM »

Thanks tomas1.
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48yo wife of Erectile Dysfunction and Peyronie's patient with hemophilia (waveboy).
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Re: Waveboy's journey in getting am implant.
« Reply #79 on: January 21, 2022, 04:34:46 PM »

In answer to question #1, I talked to Dr Eid the other day about the folds on my Titan cylinders when deflated. The folds don’t cause pain or any other problem but are noticeable to see and touch. He told me that it could take about a year for the folds to be less noticeable. He said that scar and fatty tissue will form around the cylinders to help smooth things out.
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71 Yrs old
Radical prostatectomy in 2017.
That surgery left me incontinent
2018  implanted AUS 800 artificial Urinary Sphincter
Erectile Dysfunction & Peyronies
AMS CX Penile Implant Surgery 12/16/2020
Revision- CX replaced with a Titan 20cm + 1 rte 10/26/21 Dr Eid

TheBoykinLady

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Re: Waveboy's journey in getting am implant.
« Reply #80 on: January 21, 2022, 07:13:50 PM »

Thanks tshug. 

We've had a few new things lately.

He has what Dr. Carrion now calls a "lazy Left' penis. Un-inflated, his penis leans hard left, to the point he can't stand and pee straight into a toilet. The left cylinder is the one that partially auto-inflates too.

While talking a few days ago, we discovered the left cylinder tip is no longer in the glans, even un-inflated, and is rubbing against the side of his penis.

Both tubes (not cylinders) are about 3/4 inch up the base of his penis, both inflated and not inflated. Sex is not comfortable for me, at all, and we both feel bad about it.

2/4/2022 will be 4 months post-op but from all of Dr. Eid's YouTube vids, he says the tubing shouldn't be palpable.

We were notified today we have to mail the CD from his CT to the doctor. It will likely take about 10 more days to get any answers.

Thanks and have a good weekend!
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48yo wife of Erectile Dysfunction and Peyronie's patient with hemophilia (waveboy).
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tshug

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Re: Waveboy's journey in getting am implant.
« Reply #81 on: January 22, 2022, 11:12:12 AM »

I guess I have a lazy left penis too. Even before implant surgery and Peyronies mine always leaned a little left and I’ve always had to hold it and aim while standing to pee. After I got Peyronies it was much worse. Two implants later I still have to hold and aim, but have no Peyronies.

To me the fact that he can feel the tips below the glans is more concerning. That was my case with my first implant. I could feel the right cylinder tip just below the glans and the left tip was even lower leaving me with a droopy head when inflated. I hope you get answers soon and can move on. Good luck…
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71 Yrs old
Radical prostatectomy in 2017.
That surgery left me incontinent
2018  implanted AUS 800 artificial Urinary Sphincter
Erectile Dysfunction & Peyronies
AMS CX Penile Implant Surgery 12/16/2020
Revision- CX replaced with a Titan 20cm + 1 rte 10/26/21 Dr Eid

tshug

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Re: Waveboy's journey in getting am implant.
« Reply #82 on: January 22, 2022, 11:25:42 AM »

Also my first surgeon after seeing that he had missized the cylinders insisted that they were the correct size. He wanted to do a plication on the glans to correct it! Thankfully I went to Dr Eid after getting that diagnosis.
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71 Yrs old
Radical prostatectomy in 2017.
That surgery left me incontinent
2018  implanted AUS 800 artificial Urinary Sphincter
Erectile Dysfunction & Peyronies
AMS CX Penile Implant Surgery 12/16/2020
Revision- CX replaced with a Titan 20cm + 1 rte 10/26/21 Dr Eid

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Re: Waveboy's journey in getting am implant.
« Reply #83 on: January 22, 2022, 06:55:31 PM »

tshug thanks. I've read your thread and am so happy you are doing well.

Waveboy's cylinder tips are well into the glans if he is stretched straight. It's confusing. We just don't want him scarring in the "left" position so he is staying inflated longer until we get more information.
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48yo wife of Erectile Dysfunction and Peyronie's patient with hemophilia (waveboy).
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Re: Waveboy's journey in getting am implant.
« Reply #84 on: March 09, 2022, 08:41:08 PM »

Hello everyone.

So here it is March 10th. Here is a quick recap. I had my AMS cx 700 implant done Oct. 4th, 2021. I went 6 weeks post-op before cycling  per surgeon, due to healing from penoplasty.

Dec 28th, 2021 -I followed up with the surgeon after starting to cycle and the pump kept sticking closed, left cylinder auto-filling, pump set too high in scrotum, and I didn't feel or look like I was fully inflated. Surgeon suggested give it 3 to 6 months to work out and swelling to completely resolve. I was very discouraged by that, but agreed.
Tried having sex in Jan and had lose skin moving on the shaft, and the glans was moving around with each push in and out. I had none of these issues when I got a natural erection before Peyronies Disease. Sex was very physically uncomfortable to me. My wife and I tried again in early Feb and she and I both could feel the tubes on side of shaft during sex. It was very uncomfortable and painful for sex for both of us.
Very discouraging and I am very pissed off by this time.
 
Nothing about this implant is working, pump still gets stuck closed and tubing issues prohibit sex.
So made emergency office visit for this past Monday and told the surgeon it was a complete failure! Surgeon agreed after the visit to schedule a redo on surgery. So now I wait.
I have so many questions and concerns...

Nothing about compensation for more time off work, pain, emotional distress, or the crazy number of trips to Tampa, all while gas goes up by the hour. Unsure of what to do at this point. The first surgery about killed me.

A very discouraged and pissed off man. 5 months post implant failure!

waveboy out
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48 yrs old
Factor VIII Hemophilia
4x inguinal hernia repairs, one w/mesh
Lifelong History of Erectile Dysfunction and 3yr Hx of Peyronies Disease - Meds stopped working
Peyronies diagnosis 2/2021
AMS 700 CX IPP 10/4/2021/ Dr. Rafael Carrion @USF Tampa

Mikel7

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Re: Waveboy's journey in getting am implant.
« Reply #85 on: March 10, 2022, 05:46:10 AM »

I'm sorry to hear about this. Don't give up and don't quit. Hopefully this can be resolved and fixed. You have endured up to this point and you will get through this! Sounds like you will need another surgery.
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Lump April 2020, age 60 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

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Re: Waveboy's journey in getting am implant.
« Reply #86 on: March 10, 2022, 10:45:17 AM »

Waveboy, sorry to hear this. I fully understand the emotional toll it takes on you, having experienced a failed surgery on my first implant and having a revision done in the same year. Will you have the same surgeon do your revision? If you’re thinking about a different surgeon I would highly recommend Dr Eid if not for the surgery at least having a video consult with him before going forward. Dr Eid was not in my healthcare network, but it was well worth the cost having him do my revision.
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71 Yrs old
Radical prostatectomy in 2017.
That surgery left me incontinent
2018  implanted AUS 800 artificial Urinary Sphincter
Erectile Dysfunction & Peyronies
AMS CX Penile Implant Surgery 12/16/2020
Revision- CX replaced with a Titan 20cm + 1 rte 10/26/21 Dr Eid

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Re: Waveboy's journey in getting am implant.
« Reply #87 on: March 15, 2022, 08:40:41 PM »

tshug, I'm not sure about the same surgeon and thanks for all your help. I would love to use Dr. Eid but due to work and vax requirements, I can't do NYC. I just can't.

My first surgery was set to be a titan after the initial consultation but when I received MD orders online, he'd changed from titan to AMS CX. He said this was due to my hemophilia and the girth of the Titan cylinders. If I recall correctly, he was worried they would possibly cause a rupture in the tunica and a bleeding event. However, this was not made during or after any surgery. I want to find the chart comparing them and have to do some digging around here. Given that AMS has an open recall on the MS Pump for certain ones, I'm not entirely comfortable using that implant again. My pump is not on the list and it's sticking closed.

As of right now I am scheduled for revision and new IPP on May 9th with the same surgeon. He is the department head at a teaching University. I think that's part of the problem. 2 residents were also involved in my case and I am pretty sure they are the ones that did the bulk of my surgery. Dr. Carrion just signed off.
When I asked him last week if he would be the one doing this next surgery, he said " I have assistants". I can never get a straight forward answer from him and this also makes me leary.
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48 yrs old
Factor VIII Hemophilia
4x inguinal hernia repairs, one w/mesh
Lifelong History of Erectile Dysfunction and 3yr Hx of Peyronies Disease - Meds stopped working
Peyronies diagnosis 2/2021
AMS 700 CX IPP 10/4/2021/ Dr. Rafael Carrion @USF Tampa

Stepone

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Re: Waveboy's journey in getting am implant.
« Reply #88 on: March 17, 2022, 08:27:55 PM »

Wave boy, so sorry about this failure of the doctor to ensure you had a good implant. I would have thought with your condition, you would have received extra care.
I read you are scheduled with the same doctor.
I hope you have a serious talk with them.
Remember you are the customer.
I would call the hospital and ask for help from their Patient Advocacy Board. I am sure that will get things moving and you get the right implant with the right doctor.
StepOne
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Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Waveboy

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Re: Waveboy's journey in getting am implant.
« Reply #89 on: March 21, 2022, 09:53:07 AM »

Tks stepone.
My first plan is to get surgeon on phone and commit that he will be the one taking out, resizing and re-inplant the correct IPP. Along with fully explaining the plication. Is it cutting the shaft open again or just placing 2 stitches to move head of penis back down so it doesn't rock back and forth over tips of cylinders.
This will determine if I stay with this surgeon and if so I will get patient advocacy involved. We will see how tampa general deals with those. The nursing care sucks.
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48 yrs old
Factor VIII Hemophilia
4x inguinal hernia repairs, one w/mesh
Lifelong History of Erectile Dysfunction and 3yr Hx of Peyronies Disease - Meds stopped working
Peyronies diagnosis 2/2021
AMS 700 CX IPP 10/4/2021/ Dr. Rafael Carrion @USF Tampa

Stepone

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Re: Waveboy's journey in getting am implant.
« Reply #90 on: March 21, 2022, 02:18:16 PM »

Ok,
We look forward to hearing from you.
They screwed up, not you!
Stay strong!
StepOne
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Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Hawk

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Re: Waveboy's journey in getting am implant.
« Reply #91 on: March 23, 2022, 10:04:38 PM »

Waveboy and TheBoykinLady, I am distressed by all of this.  I am happy to discuss this by phone but in brief.

You should be able to urinate all over your feet at this point and literally bend your penis double, so the tip is pointed back toward you when deflated.

The tubing should NOT be palpable except with effort.  While I am not a lean guy with six-pack abs, no one would call me overweight.  I am a little over 5'8 and weigh 160, and fit. The likelihood of feeling the tubing increases with extremely lean body mass, a retropubic approach, and rear tip extensions.  No one could accidentally feel my tubing with any amount of vigorous foreplay.

Plaque did not keep you from bending your penis before surgery and should have no bearing on bending it when deflated after surgery.

I think that amount of inflation is probably OK, but it is pushing the envelope.  Typically two hours a day will provide all the positive results you will ever get, and I did less.

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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

Waveboy

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Re: Waveboy's journey in getting am implant.
« Reply #92 on: April 10, 2022, 09:02:53 PM »

7 month recap-

PRO'S- I had no infection and didn't bleed to death.

CON's-
Mentally, I am just sick of the doctor  BS!

I have a 23cm AMS700 implant with a BPL of 11cm or 4.5 inches. I have 13cm proximally and 11 distally per the post-op note. I only weigh 200lbs. Where did they put 13cm and WHY? I can't get any answers.

Post-op, I'm pretty sure I had the worst case of thrombosed hemorrhoids ever doccumented, and I had never had hemorrhoids before this surgery.

My Pump is anterior and still rides very high.

My Pump is still sticking closed on average once every 3-5 days. Sometimes I have to reset multiple times to reach inflation.

Cylinder tips do not extend at least 1/3rd into glans now that swelling has resolved and the left side has created a small spot that is sensitive on the shaft, just below the glans -due to the ever present auto-inflated curve making it deviate from midline.

My penis never hangs in a normal position, even when deflated. 90 degrees is as far South as it will hang.

Sex is possible but definitely NOT pleasurable for either of us due to the 2 tubes being located 3/4 inch up onto shaft. They are very palpable, even when deflated.

Shaft has loose skin while inflated. I am actually not sure I'm fully inflated because the CT reads "possible cylinder kink". After many attempts to get results from Dr., I still don't know his opinion. I can inflate until the bulb will not compress further.

After all swelling resolved~around the 3 month mark, I noticed I had glans instability.

Auto-inflation in left cylinder only. CT does not indicate which side may be kinked.

I have a serious issue with my penis curving to the right when flacid and have to deflate before every urination, and even then it's hard to angle it down to hit a urinal or toilet.

USF is a teaching hospital and I found out through my records that Dr. Carrion wasn't actually the surgeon that did my implant.

I had a sub -coronal approach and still can't wear regular pants. Incision is fine, just still sore.
____________________________________________________________________________________________

Since day 1, I have zero discomfort/ pain upon cycling. This makes me think I am not, and have never been, 100% inflated. I have been cycling at night, leaving myself inflated all night to prevent scar/fibrotic tissue and have no discomfort in the mornings, per MD orders.

Dr. wanted a wait and see approach, even when my pump failed in the office at the 6 week mark.

I reached out to Boston Scientific and the rep contacted me but over the course of a few calls, he stopped communicating. I think he realized the implant had failed.

The last visit, 3/7/22, Dr. agreed a revision was necessary. He scheduled surgery for 5/9/22. I am going tomorrow to Dr. Hakky, in Atlanta GA, for a second opinion. I would prefer not to be a practice dummy again at USF.

Update after tomorrow! Wish me luck please.

Waveboy out.

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48 yrs old
Factor VIII Hemophilia
4x inguinal hernia repairs, one w/mesh
Lifelong History of Erectile Dysfunction and 3yr Hx of Peyronies Disease - Meds stopped working
Peyronies diagnosis 2/2021
AMS 700 CX IPP 10/4/2021/ Dr. Rafael Carrion @USF Tampa

Hawk

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Re: Waveboy's journey in getting am implant.
« Reply #93 on: April 11, 2022, 12:13:24 AM »

Waveboy,

You are making the right move.  I would not go back to Dr. Carrion. if you have a choice.  He had his chance and you have no assurance who actually is assisting in the surgery.

You are in our thoughts and prayers.  Please give us a thorough update.  I am following your battle closely.
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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

tomas1

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Re: Waveboy's journey in getting am implant.
« Reply #94 on: April 11, 2022, 05:49:14 PM »

I was thinking the same thing about staying away from that facility.
Too bad it's impossible to get a mal-practice conviction for these hacks.

I just noticed that carrion means decaying flesh.
Sorry if that crosses lines.

I also have doubts that you got the size implant they said you got.
We'll find out when it's revised.
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83 years old.
Implanted 01/22/19 by Dr Avila.
18cm AMS 700 CX, 3.5cm RTE 100cc reservoir
Diagnosed with Gleason  6 prostate cancer.
Monitoring it for now.

tshug

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Re: Waveboy's journey in getting am implant.
« Reply #95 on: April 12, 2022, 08:12:39 AM »

Waveboy, I hope  your meeting with Dr Hakky went well and he gave you answers to your questions. I definitely would not have Dr Carrion do my revision surgery. Good luck going forward.
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71 Yrs old
Radical prostatectomy in 2017.
That surgery left me incontinent
2018  implanted AUS 800 artificial Urinary Sphincter
Erectile Dysfunction & Peyronies
AMS CX Penile Implant Surgery 12/16/2020
Revision- CX replaced with a Titan 20cm + 1 rte 10/26/21 Dr Eid

JustAGuy2020

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Re: Waveboy's journey in getting am implant.
« Reply #96 on: April 12, 2022, 06:04:27 PM »

Hey Waveboy, hope things are going ok with your second opinion.  I read through your journey notes and I definitely sympathize.  I had my implant around the same time (9/23/21) with Dr Levine in Chicago via subcoronal approach as I too have Peyronies and he did incision and grafting in addition to the implant.  I can tell you from my experience the following

AMS./ Boston Scientific implant was not even an option - Levine states that Coloplast is the only implant that he will use for Peyronies Disease.

I received 20 cm with 2.5 cm RTE - tips are seated well and no glans issues

No loose skin when inflated

I do still have discomfort when fully inflated, can only tolerate about 40 minutes at a time before I must deflate

If you incision is still bothering you I recommend wrapping the area in gauze and using medical tape to secure it, that worked wonders for me to protect the incision area from chafing.

Thats all i can think of for now.  Good luck with Dr Hakky
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53 y/o, Peyronies Disease symptoms onset 2018, diagnosed 2/19.
Pentox failed, Ref. to U-Michigan, doppler showed 45D right curve and 80D dorsal with hinge effect.
Incision/grafting/plication surgery at U-M 9/20 (failed).
Implant and graft repair with Dr Levine 9/21

JustAGuy2020

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Re: Waveboy's journey in getting am implant.
« Reply #97 on: April 12, 2022, 06:32:27 PM »

a couple of other comments

my pump never goes flat or fails to reset

I have no issues with auto inflation

as hawk said, you would have to search to find or feel any of the tubing

as far as size, i dont have measurements from pre-peyronies but i am about 6” erect now, hoping to gain a bit more through cycling.  overall i am happy with my outcome so far, GL with yours
Logged
53 y/o, Peyronies Disease symptoms onset 2018, diagnosed 2/19.
Pentox failed, Ref. to U-Michigan, doppler showed 45D right curve and 80D dorsal with hinge effect.
Incision/grafting/plication surgery at U-M 9/20 (failed).
Implant and graft repair with Dr Levine 9/21

TheBoykinLady

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Re: Waveboy's journey in getting am implant.
« Reply #98 on: April 14, 2022, 07:48:29 PM »

Update from Waveboy's wife

Dr. Hakky was absolutely wonderful. He even apologized to Hubs. He said he felt the whole debacle reflected negatively on all of Carrion's previous residents. You could tell he really meant it. They, Hakky and Carrion, are still really good friends but he understood what the situation was at Tampa General since he spent 4 yrs working under Dr Carrion. He also said that had Carrion done the surgery, we wouldn't have been in his office because he is a fantastic surgeon. Unfortunately, that was not our luck because we got his attending and a resident. I would love to be a fly on the wall when this subject comes up. HIPAA be damned ;D

After the physical exam, Dr.Hakky did an ultrasound to locate the reservoir and confirmed something we'd been suspicious of for a while. Since hub's penis has never hung below 90 degrees, we felt the reservoir was either mal-placed or had become dislodged. Either way, it's likely pressing on the suspensory ligament causing the wrong angle. It's just to the right/over midline, sub-dermal.

His pump is backwards and malfunctions. Dr. Hakky also said he thought there was a kink in the tubing which would also confirm us thinking hubs has never been able to fully inflate(we got to see all of this on ultra sound). Also, he has a cylinder that has kinked/collapsed.
The main thing is, Dr. Hakky doesn't think he was sized correctly. He said the cylinders do not extend into the glans enough and that he shouldn't need glans pexy for floppy glans if he is sized properly.

So, Brent is cautiously optimistic..due to insurance and timing. Hakky is only in the OR one day a week, so surgery is tentatively scheduled for July 5th. That's IF Georgia comes to an agreement with BCBS and our insurance approves his out of network appeal. A lot of 'If's' but hopefully it all works out!

There is an area just above the penis, at the infra-pubic area, that is thickened and firm. He isn't sure what that is but we know it isn't a new plaque, thanks to the ultrasound.
I have to get the CT put on a USB drive and mail it. He didn't have a disk drive in office, so more revelations may come after he has access to that.

The plan is to remove, re-size the corporotomies, and replace with a Titan. The reservoir will likely go above the umbilicus due to hernia mesh and the extended heal time of another supra-pubic incision.. The actual implant approach will be scrotal. It is scheduled for a 3 hr surgery, due to the unknowns.

Hubs will post when he has a chance but I wanted to drop you all note with an update. I really do like Dr. Hakky. Super easy to talk to and I left the office with his cell # and email without having to ask!

Moral of the story is DO NOT allow a teaching hospital to do your implant. Even if it's chaired by a superstar surgeon. You don't know who is actually operating on you!
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48yo wife of Erectile Dysfunction and Peyronie's patient with hemophilia (waveboy).
I'm looking for answers but am happy to answer any questions you may have.

Hawk

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Re: Waveboy's journey in getting am implant.
« Reply #99 on: April 14, 2022, 08:31:38 PM »

I am very surprised that he could be so undersized with 23 CM of implant/RTE that the tips do not even reach into the glans much less 1/3 or 1/2 of the way in.  I think his penis would have to be 7" at the very least for that to be true.  It will be mind-numbing if they find that he got misinformation on his implant size on top of everything else.

At this point, we already have
1. Pump installed incorrectly
2. Reservoir placed incorrectly
3. Cylinder twisted
4. Possible kink in the tubing (which I think will be confirmed)

What an outrage.

Everyone should follow her advice and know who is operating on you and if anyone is assisting.
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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
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