Autoimmune symptoms from implant?

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IwillbeatPD

Hey guys-

Was doing some reading that the coloplast titan is made from silicone and bio flex material. I remember reading a story years ago about a girl with silicone breast implants have terrible systems that doctors could not figure out. Eventually she identified it as BII (breast implant illness). This is basically where the body reacts to the implant. From my reading, it appears this can happen with any implant and other materials besides silicone. Seems it is widely unknown that the exact cause is. There are thousands of cases per year where women get implants taken out due to the law symptoms though.

That being said, would you all be worried about that? The scary thing is you could have one of these symptoms and have no idea your implant is causing it. There's really no way of knowing.

Attaching a link to the article I read, it's very thorough and combines info from other studies. Would love to hear you alls thoughts as I'm currently worried about this.

PS- I've read from Clavell and EID that they both say your body can't reject the implant. Generally speaking that may be true, but it sounds like you could certainly have symptoms long term as a result and have no idea if it's from the implant or not. The thing to note in the study is, once they removed the implant the symptoms went away- indicating it was in fact the implant causing symptoms.

A couple thinking points:

1. If we use our dick 2 hours per week, that's 8 out 168 hours a month we're using it (4% of the time). The other 96% of the time you could be dealing with these symptoms.

2. I think many of us know the mental burden of not being able to use your dick. Even knowing the above, I still feel like the risk is worth it.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9095406/
Fit 37 year old athlete. Hinging and hourglass began Sep 2022. Tried VED, Restorex, tadalafil with no improvement. Implanted by Dr Hakky 11/28/23 with Titan touch XXL 26 cm no RTE's. Pre op 8.25Lx 5ish G. Post implant: 8.25 L x 5.5 G

Hawk

You are comparing two VERY dissimilar things.  Breast implants were filled with large quantities (pounds) of silicone gel that had the potential to leak into the body and migrate throughout tissue, creating a catastrophe.  Trying to find, identify, and remove it is a very imprecise operation.

A penile implant has NOTHING in common with that. What fills an implant is sterile saline that could be administered (and often is) to a patient in their vein.  The only silicone is the empty, formed, solid cylinder lining that is partially made of medical-grade silicone.  They have been doing penile implants for over 30 years.  There have been tens of thousands of implants, and there has NEVER been a case of anyone rejecting or dealing with ANY symptoms of rejection.  Your concern is completely unfounded.
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

Neolio


It worries me too.

The implant is not filled with gel. But it is made of silicone. It's only logical that silicone particles come off over time and enter the body.

There is a case of sarcoidosis in my family. And there are isolated cases in which breast implants have triggered sarcoidosis in women. But silicone is also associated with other autoimmune diseases.

The implant gives me great hope! At the same time, the possible impact of the silicone unsettles me.
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Stepone

I think an important word to focus on is NEVER.
Hawks note says NEVER.
Of course there is always a chance of
Surgical problems
Bad surgery outcome
Infection
Etc., but high volume implant surgeons minimize problems.
I hope you can find some peace and as one of my doctors once told me, "stay off of Google".
Best wishes
StepOne

Quote from: Neolio on October 28, 2023, 06:04:38 AMIt worries me too.

The implant is not filled with gel. But it is made of silicone. It's only logical that silicone particles come off over time and enter the body.

There is a case of sarcoidosis in my family. And there are isolated cases in which breast implants have triggered sarcoidosis in women. But silicone is also associated with other autoimmune diseases.

The implant gives me great hope! At the same time, the possible impact of the silicone unsettles me.
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Neolio

It's not about a complication of the surgery, it's simply about the silicone in the body.
Even if the surgery goes perfectly, the silicone is in the body and could release particles.

This may not be a problem for normal people. But if someone has an immune disorder like sarcoidosis, it could trigger it.

The question is, does the implant really release particles into the body or not?
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Stepone

Understandable
So my point is, there are lots of things to worry about, the least of them is silicone damage.
Do you have sarcoidosis?
I am not as well read as Hawk, but if you are still concerned, call the manufacturers.
I haven't heard anything about silicone issues, so I don't know where you are getting this information?
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

IwillbeatPD

I've kinda came to peace with this. Do I think there is SOME chance foreign material could affect you to some extent, even if .0001%? Yes, I do. But people have all type of foreign material in them from other surgeries, broken bones, artificial knees, hips, etc. For me it comes down to this, if my options are not being able to use my dick, and having a generally safe material inside my body, I'll take the implant. Worrying about my dick the rest of my life I think will be of far more concern than this topic. But, yes, I do think many things doctors do not fully understand, including auto immune diseases. At the end of the day, I think you have to just weigh the pros and cons. There's alot of guys with implants and I'm sure the vast majority do not have auto immune diseases. That's good enough for me. I just want my dick to be normal again.  
Fit 37 year old athlete. Hinging and hourglass began Sep 2022. Tried VED, Restorex, tadalafil with no improvement. Implanted by Dr Hakky 11/28/23 with Titan touch XXL 26 cm no RTE's. Pre op 8.25Lx 5ish G. Post implant: 8.25 L x 5.5 G

Hawk

Quote from: Neolio on October 28, 2023, 07:54:54 AMIt's not about a complication of the surgery; it's simply about the silicone in the body.
Even if the surgery goes perfectly, the silicone is in the body and could release particles.

What do you base your completely imaginary scenario on?  NOTHING but imagination.  Until you can bring ONE SINGLE documented case of any of the tens of thousands of implant patients who have had ANY issue from the silicone in an implant, then it is like saying "what if a motor car going 80 miles per hour might cause blood insufficiency in your brain and heart or what if it gives you minor cumulative effects of G forces over several years."  Such a statement would be the absurd product of a little knowledge being a dangerous thing. The little knowledge is ---> (High G forces can be deadly). The dangerous thing is ---> extrapolating and telling others to keep a horse and don't get in a car because minor repeated G-forces are potentially dangerous) These people then die because they can't ride their horses to the city to get heart bypass surgery.  :)  :D  ;D  :)

Quote from: Neolio on October 28, 2023, 07:54:54 AMThis may not be a problem for normal people.  But if someone has an immune disorder like sarcoidosis, it could trigger it.  

Again, what study is that?  Who told you that?  What training do you have even to offer that as a hypothesis?
The answers are: None, Nobody, None

This forum is not a place to speculate on whether the moon is made of green cheese.  It is a place we provide, so rumor, old wives' tales, and guesswork can be replaced with evidence, science, and real-world experiences.

 
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

yodarb

New guy - not trying to heat up this discussion.
Hypersensitivity or allergic reaction to silicon is a contraindication for the Coloplast implant. So, the medical community is aware of this risk. I do not have a specific case study - but given that sensitivity to silicon is real and there are 20K implants per year, it seems possible (but unlikely) that it could happen to someone.

That said, the medical industry uses silicon for a reason, sensitivity to silicon is rare and it is largely inert in the body. Also, this does not have anything to do with autoimmunity, it would be an allergic reaction. There are much bigger risks (yet still mostly small risks) for a penile implant.

Your chances of a penile fracture or herniated implant are likely higher (and this is extremely low). And yikes - I would be freaked out over these. There are lots of very rare risks to a penile implant, a good surgeon will discuss these carefully with you before committing to a surgery. The biggest risk by far seems to be infection and this is less that 1% for high-volume implant surgeons. And again, this is something that is a real concern, but I think worth the risk.

IwillbeatPD - it is very unlikely that you would have any reaction to silicon. If you are concerned, I'd suggest that you get tested for silicon sensitivity - I doubt that it is difficult.
I'd also suggest that you edit your original post to include the fact that sensitivity to silicon is very rare.

 
Age 61 Married
Have been dealing with moderate ED for many years, originally needed thyroid and testosterone, then using Trimix.
Recently diagnosed with Peyronie's - early.
Treating with Traction and Pentox. Don't know the next steps.

Neolio

I have been reading in this forum for a long time, and my personal opinion is that implants are probably the best and most promising solution. They give me a lot of hope. At the same time, I have a family history of sarcoidosis, and I'm afraid that an implant might be denied as a solution. So, I come with a preexisting concern and need to delve into the topic more thoroughly than someone without an immune disorder.

Hence, I ask questions.

My impression now is that these questions have stirred up many emotions. They seem to have been perceived as an attack on the "holy grail."

Hawk writes that this forum is not a place for speculation. At the same time, he claims that I have not read any studies, talked to anyone, and have no relevant background. Isn't that speculation, Hawk? Do you know me? How can you know that I haven't read any studies or what my background is? It's somewhat strange...

I believe it's better to conduct discussions in a rational and emotionless manner.

So, back to the topic: I'm specifically interested in whether penile implants release silicone particles into the body. There should be studies on this. Does anyone know of one?

(I have already contacted the manufacturers.)



On a side note: Some cases are being conflated here, but they are different:
- Rejection reaction to the implant
- Allergic reaction to silicone
- Release of silicone particles into the body
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yodarb

Neolio - absolutely, I would suggest you follow up with a physician about your concerns with silicon and your family history of sarcoidosis.
One thing that many people fail to understand is that many conditions (such as sarcoidosis) are very rare and not concerning to most people. But if you have a 1% chance of it being an issue, you should take it very seriously. I have Hashimoto's (a thyroid autoimmune condition), because of this, I have a small risk (maybe 1%) of developing other autoimmune conditions like sclaroderma - which is also associated with Peyonie's. So, absolutely, I'm getting evaluated. But I would not suggest that most people should be concerned about autoimmune disorders.
So, get this checked out.

To your question "Do penile implants release silicone particles into the body?"
Penile implants are made from a long-term implantable medical silicon that is very inert in the body. I would suggest researching this material rather than penile implants specifically. But it does not release silicon into the body. the issues with Silicon embolism and free silicon are due to filling implants (like breast implants) and injectable silicon. These are known risky uses of silicon.

To the "holy grail" - I think there are many men who come to this site with mostly unfounded fears about penile implants. (I have been one of these). Penile implants are very safe and have very high satisfaction rates. Hawk is right to be a strong promoter of implants. Specifically, silicon reaction is very low on the list of risks for penile implants - for the vast majority of people.

But, if you have a reason (like family history) to be concerned about silicon - get it checked out. It is important to your health and your ability to make an informed decision.

Best of luck.
Age 61 Married
Have been dealing with moderate ED for many years, originally needed thyroid and testosterone, then using Trimix.
Recently diagnosed with Peyronie's - early.
Treating with Traction and Pentox. Don't know the next steps.

Stepone

Thanks for your opinion.
Since I have not heard of anyone having any issues with the materials in the implant, I guess I am more concerned about zombies right now, as I have seen lots of sightings, lol.
I get your point.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

yodarb

Stepone - I too have concerns about zombies.
 
I think there are two common outcomes about researching implants -
one, is reducing some of the common fears like size and loss of sensation - most of the time, implants have great outcomes. An 85% - 90% satisfaction rate is a medical miracle.
but two, is learning about some of the rarer risks. The truth is this is serious surgery and anyone undergoing it should have concerns. For most people, these risks are very rare - likely less that zombies.
 
Age 61 Married
Have been dealing with moderate ED for many years, originally needed thyroid and testosterone, then using Trimix.
Recently diagnosed with Peyronie's - early.
Treating with Traction and Pentox. Don't know the next steps.

Hawk

The strange part of this discussion was the suggestion that small particles of silicone could come off and get in the body.  It is so bizarre because those particles would presumably be coming off of a large piece of silicone that is already in the body. If the large cylinders did not harm the patient, a small particle would not harm him.  As has been pointed out, this is NOT injections, fillers, or silicone-filled bags leaking into tissue.  It is rugged solid silicone.

If someone is going to stress over every possibility that has 1/2 of one percent or less of happening, then they should live with the 100% chance that their penis is not functional and get on with life. We know that nowhere near 1/2 of 1% have a silicone reaction since there are zero documented accounts. I submit there is far more likelihood that:
1. you will get an infection
2. Have a botched surgery
3. Be injured or killed in traffic on the way to surgery and back home
4. Catch COVID and die
5. Be assaulted or murdered in the neighborhood near the hospital.

Finally, this is not about me promoting implants.  It is about being caught between being amused and annoyed at people tying up a forum to discuss absurdities and not being able to grasp the absurdity after it is explained and tying up the forum further.  I would be the same way if the discussion was about the possibility of Xileflex leaking from your penis into your Dupuytren's Contracture and improving it.

Let's get back to actual issues facing men with Peyronies Disease and ED.

 
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

Neolio

Quote from: Hawk on November 04, 2023, 12:07:49 AMThe strange part of this discussion was the suggestion that small particles of silicone could come off and get in the body.  It is so bizarre because those particles would presumably be coming off of a large piece of silicone that is already in the body.
You wanted to know about my background. I am an engineer. Materials science was a part of my education. "Bizarre" to me is the idea that a material would indefinitely maintain its structure, regardless of temperature or mechanical influences.

Quote from: Hawk on November 04, 2023, 12:07:49 AMIf the large cylinders did not harm the patient, a small particle would not harm him.
Now it's getting worrisome... a permanently embedded, solid piece of silicone is NOT the same as a minuscule particle that can travel uncontrollably through blood vessels and lymphatic vessels.

Quote from: Hawk on November 04, 2023, 12:07:49 AMIf someone is going to stress over every possibility that has 1/2 of one percent or less of happening
It pleases me again and again to read about the low probability. As I have written multiple times before, my case is different, and the chance cannot be equated with a typical case. At this point, all I can do is simply repeat it for you, Hawk.

Quote from: Hawk on November 04, 2023, 12:07:49 AMIt is about being caught between being amused and annoyed at people tying up a forum to discuss absurdities
Phew... it's interesting that my case amuses you. For me, it's genuinely very serious. Apart from the dangerous misinformation you are spreading, I find it unbearable that you openly make fun of people.

I won't write here anymore as I get the impression that the forum's founder does not welcome critical questions.
All the best.

 
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Hawk

NeoLio, I was not suggesting I am amused BY YOUR CONDITION, and I think you know that.  I think the discussion is a bit much in general, and you were not even the original poster, so it serves no purpose for you to get offended.

Since no leading implant surgeon reports a history of concern or issues with the silicone in an implant, since no study suggests an issue, and since there are no soundly verified medical reports, how can it be beneficial to you, the original poster, or other men who come here for information to promote this discussion? Indeed, if you and IWillBeatPD, with your intense interest, cannot find ANY medical evidence of this, surely plumbers, lawyers, accounts, and mechanics on a forum cannot shed one bit of light on this undocumented, non-investigated, non-reported topic.  

It serves to only confuse men over a concern that exists solely as a hypothesis in the mind of a non-medical person.

PS: The reason oral and IV antibiotics are ALWAYS ineffective in curing an infected implant is because the body seals the implant off in a capsule, and antibiotics cannot effectively reach the infection.  There is zero evidence that tiny pieces or particles of silicone break off, get into the bloodstream, and float through the blood vessels. Any evidence to the contrary is welcome.  Wild speculation and fantasy is not.

I suggest you pose the question on Dr. Eid's board so you can get an answer from someone who would have to know if this is even of the slightest concern.  
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

IwillbeatPD

Hey Hawk-

Totally fine with you just deleting this whole post if you want to. Definitely didn't intend for this thread to become this. I think at the end of the day any potential risk (even if .001%) is just not even worth talking about in comparison to the new life you get with an implant. Last thing I'd ever want to do is have someone avoiding an implant due to a "what if" scenario.

I'm still moving forward with my implant surgery at the end of this month if that says anything about my thoughts.



 
Fit 37 year old athlete. Hinging and hourglass began Sep 2022. Tried VED, Restorex, tadalafil with no improvement. Implanted by Dr Hakky 11/28/23 with Titan touch XXL 26 cm no RTE's. Pre op 8.25Lx 5ish G. Post implant: 8.25 L x 5.5 G