TOPIC: Peyronie's Disease & PMMA Journal

6 Week Plus

The pictures above were taken earlier in the week, just before the 6 week mark. I have since had treatments, and I am a bit over 6 weeks now. I've been following the treatment plan outlined in the chart below from a journal article. My doctor requested that I asked Wade how much Kenalog and 5fu Dr. C gives - or if he cuts nodules out (or does subcision), but he didn't reply...twice. Even though I only have what is technically considered "early nodules" - I am still taking an active and aggressive approach because Linnea Safe works on a much faster timeline than Artefill (which is all that USA publications discuss).

There is very limited literature about how to manage complications from this kind of PMMA. So, I had the saline/lidocaine treatment shown in this chart (and it made me black & blue - but it doesn't hurt much) - and as I mentioned before, I had a little Kenalog/5fu where the nodules were causing functional problems (urethra - 2 mg Kenalog/ 15 mg 5fu) and huge (underside at day 10 - 2.5mg Kenalog) which reduced them drastically. Unfortunately, I didn't do them all at day 10 out of concern for Kenalog Atrophy. 5fu does give some (minor) weird side effects since it is chemo (though 1/20th the dose of chemo & not in a vein). The other nodules may respond sufficiently to saline & not need further intervention. Saline can potentially break them up and re-disperse the PMMA into the tissue. If not, then I'll have to be more aggressive...but Kenalog and 5fu may make me lose the tiny bit of Girth that I got for 3 rounds, so I'm going slow with it.

And this is pretty pricey as well...but since I work in this field - I am not paying $300 per injection for most of it. A bottle of 5-fu is $20, and they are single-use...so it's a huge waste of money to inject 0.3ccs when the bottle has 10ccs (but worth it)! The "bad nurse" method is to pre-load sterile syringes out of a single-use bottle and then inject it later in the week, but I'm just going to spend the extra $20.

So - we will see in 3-6 weeks how these treatments have turned out. In my case, early intervention helped so far (though it could leave atropy - so far, so good, though). 5fu isn't an aggressive drug, so I don't think it should leave any major dents... and we used very low dosages. "Saline disruption" looks ugly (black and blue), but it might work after a few rounds. (I changed the word from subincision because that misspelling has VERY different meanings. I meant SubCISIOn..not SubINcision...)

Sorry if these are long annoying posts... I don't have anyone else to talk to about this & I really haven't seen anything on here about these specific steps to clear up problems from PMMA...so I figured I'd be as detailed as possible.

Did you email Prof Lemperle? I'm sure he'd look at your photo's and recommend the best amount of Kenalog to use.

If this doesn't work then I'll email him and see if he replies but he might just say go back to dr c. I'll wait for things to settle and see what to do. Everything always looks so good swollen (saline in there)

Restoration, I can't possibly imagine what your going through right now. I really hope you pull through and things turn around for you. It sucks that you are not getting replies from Dr. C. I wish people would stop going to them for a while so they can see a dent in their income so they'll wake up. BUT I know that may never happen because theirs so many desperate guys that come here and ignore the risks involved. Keep us posted restoration.

Thanks New 1 - my head was messed up pretty bad from weeks 2 on, as my (mildly ocd) posts show. I got on top of it because I am around medical stuff all the time...and I think I am more optimistic now. When I do the "vigorous massage" (noted in the chart) I think it feels better than it did prior to the treatments. The keanlog/5fu definitely worked on the urethra Nodule.

IMO, that flow chart I posted from the journal article has really good advice about nodules from fillers. So, I hope people who have early (or late) nodules can see this thread and take action that will help them...especially with saline since it is so benign. If it can disrupt these things, then that would be great. 5fu and Kenalog are not that serious (**in the right doses and concentrations**) and they are FDA approved. 5fu was invented in 1957! Amazing that it's still a popular chemo agent, huh.

I have just had to get out of my head about this whole Dick thing. I started going back to the gym and just trying to forget about it. And, as a karmic reward, I randomly had this insanely hot trainer come up & explain to me how to do dead lifts for 15 minutes...so that distraction was good, especially since my penis is closed for repairs and he was obviously straight anyway. And now my hamstrings are killing me since I never used proper form before. HA.

My bruising is super dark purple...it might take 7-10 days to look normal again. Wonder why saline did this - maybe because he was trying to break apart the nodules so there was some trauma...and I guess needles are a recipe for bruising unlike cannulas.

sorry for digging on you thread but i live in europe if you was insted of me what would you chose on the basis of money and experience go to dr c in tj or Go To dr n in prague?

7 week

My Dermatologist thinks the results from the injections are going ok...and we're not doing any more for a while (of Kenalog and 5fu). The 5fu irritated the hell out of my lower left lump after a few days (not unusual). He scheduled me to have 2 of the nodules excised in 6 weeks (one is 5mm and one is 9mm), assuming they are still there (which is 90% he thinks). It's a 45 minute procedure. He said it will need stitches, but they will make them tiny & take them out in a week, so I won't see anything after a few more weeks. The nurse then injected some additional saline since that seemed to help. Using a 30g needle, I couldn't even feel it. She used to treat men who had skin cancer on the penis, so I was in the right place.

They can put it the excision through insurance as a foreign body reaction excision, though there's no guarantee they will pay - and the billed price is over $1000 to excise. Insurance always discounts it since the doctor is in-network, but not if they see it as cosmetic. Blue cross is auditing a LOT these days and if they ask for more details and the derm says the foreign body is a cosmetic filler from mexico, they will reject the claim and I'll owe the full amount. (So, $11,000 for 1/2" gain and lumps + 12-15 days off work staying in the lovely grand hotel). Regardless, I have not met my deductible, so the cost will be in the $400-600 range even if Blue cross doesn't deny it. I am not sure if we are sending it to pathology or not - I need to talk to him abut this, because that will add to the cost, but I wonder if they can see what the hell is in there. I still have not received a reply from Wade about Dr. C removing the nodules, what they inject them with, or what the cost is to remove them. I wonder why they seemed to bend over backwards for Red1975, but for me - nothing.

Restoration wrote: 7 week

My Dermatologist thinks the results from the injections are going ok...and we're not doing any more for a while (of Kenalog and 5fu). The 5fu irritated the hell out of my lower left lump after a few days (not unusual). He scheduled me to have 2 of the nodules excised in 6 weeks (one is 5mm and one is 9mm), assuming they are still there (which is 90% he thinks). It's a 45 minute procedure. He said it will need stitches, but they will make them tiny & take them out in a week, so I won't see anything after a few more weeks. The nurse then injected some additional saline since that seemed to help. Using a 30g needle, I couldn't even feel it. She used to treat men who had skin cancer on the penis, so I was in the right place.

They can put it the excision through insurance as a foreign body reaction excision, though there's no guarantee they will pay - and the billed price is over $1000 to excise. Insurance always discounts it since the doctor is in-network, but not if they see it as cosmetic. Blue cross is auditing a LOT these days and if they ask for more details and the derm says the foreign body is a cosmetic filler from mexico, they will reject the claim and I'll owe the full amount. (So, $11,000 for 1/2" gain and lumps + 12-15 days off work staying in the lovely grand hotel). Regardless, I have not met my deductible, so the cost will be in the $400-600 range even if Blue cross doesn't deny it. I am not sure if we are sending it to pathology or not - I need to talk to him abut this, because that will add to the cost, but I wonder if they can see what the hell is in there. I still have not received a reply from Wade about Dr. C removing the nodules, what they inject them with, or what the cost is to remove them. I wonder why they seemed to bend over backwards for Red1975, but for me - nothing.

That's kind of douchey of them. Best wishes brother.

Week 7 continued

No size increase. 9 palpable nodules. 2 require excision. 10 have been injected. 1 is gone.

He did write back today - but it was only to ask me to explain what I did as aftercare. No answer to the questions about removing the nodules.

Me:

Here are pictures from now at 6 weeks. I did not gain any size in the Flaccid or Erect state, but I have about 10 nodules (not all are visible, but I used arrows to show where the main ones are). If I come to Mexico, will Dr. C be able to do treat the nodules? Can he cut the nodules out or break them up with the cannula? I am asking because I can get Kenalog and 5-fu here, and it is pretty expensive to get to the office. Nobody in [my city] will cut out the nodules, but if he can do it - then it is probably worth the trip. Also, I don't want more PMMA - so would I be paying the $1100 touch up fee, or would there be a different fee for treatment of the nodules alone? I suppose if he has to use 1-2 ccs to even something out, maybe that's fine - but I would generally prefer not to have any more PMMA, unless it's really the only way to treat this (via camouflage). Thanks.

Wade:

Please explain in detail what you did regarding after-care once you left our office.

And it gets worse. This hurts like hell and is oozing clear fluid. I emailed Wade and my Urologist. Will call derm in the morning. Not sure who is going to be able to respond. Does this look like a FBG? An infection? It is very confined to the area where it is...and where PMMA isn't supposed to be injected - but was injected... under the shaft.

What is fbg?

Hey smalljay - thanks for your post. I'm seeing a Dermatologist tomorrow, so he'll hopefully know what to do & I can find out more. I'll post more details once I see him. This Nodule is a weird one because it is on the underside and connected to a ridge that goes all the way to the entry point. This is where Dr. C kept poking my stitches, trying to break them up (I guess he thought it was a ridge from a prior round) - until I reminded him I have internal stitches there from my peyronies surgery. He knew that from R1, but I guess he didn't check his notes. Anyway, a small amount of Kenalog and 5fu (tiny amount - 6mg) was put in there & the ridge it is connected to (which flattened out) - and it was the same needle as most of the others, and those are fine. So,I don't know what's happening but I'll hopefully find out tomorrow.

Fillers often form biofilms - but there hasn't been much discussion of this here. Regardless, it could be that as well, though I don't know. I took antibiotics a few times during this process...not cipro...which I can't take. I might have to switch to minocycline and/or biaxin if it is an infection or biofilm, because those are more likely to be effective with filler inflammation & associated bacteria. They can also inject gentamicin in the area...but I'll know more tomorrow. Biofilm cultures are usually negative.

FBG = foreign body granuloma

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Thanks DWD, yeah I definitely don't plan to do anything drastic. This Dermatologist is smart and had a very conservative approach in the past and with the nodules that aren't going away. We're waiting until the end of june to even do that...which will just be a small incision and then Removal of the smallest lumps first. The big lumps were injected, so we are waiting for them to shrink for a month before deciding what to do. They are all palpable in the Erect state now, but it might change. Doing what Darkstaff did isn't really an option on the table for me at all. I don't have systemic effects. My Urologist suggested an evaluation at 6 months, and he only mentioned the deglove because that is what he does with fat graft patients who have no other option. He doesn't really see patients with fillers. However, dermatologists who work with fillers see nodules all the time, and they know how to take them out with small incisions...or reduce them with injections. Aside from Removal and injections, I suppose I could take antibiotics or steroids for this - once I know what it is...so I guess he can take a sample of it and find out. I'll update on it tomorrow.

I am not sure why all of this happened. It settled near the injection sites and under the shaft - and by the ligaments...and in areas where I wasn't even fully degloved (at the base - most of the surgery was at the top). In the last rounds, this didn't happen except for some small raised injection sites which went away (that most people have). Miracle 8x7 had peyronies surgery too...and a few elist patients went to Dr. C with existing scar tissue, so I don't understand what happened to me that was unlike them. Christian was the assistant instead of wade (even though Diana told me Wade was going to be there & I paid extra to fly that day) - so maybe it had to do with that...and where he was applying pressure or something. 99% of articles say that nodules have to do with "injection technique"...so I don't think aftercare was the issue, either (I stayed 3 days). I knew the aftercare routine from R1 and 2. Last time, I manually removed one injection site lump per your procedure and it took 10 min... this time - it was not budging - I tried it only with the one on the right...and gave up. It's still there. The Dermatologist probably needs to cut it out from the underlying layer of PMMA - since it is tethered to that, and that's something I couldn't do. I read in other logs that Dr. c "burns them off" - but I don't know if I read that right...or if that was described right. I think that would do more harm than good.

Anyway, that's it for now - I am just glad they could fit me in tomorrow.