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Author Topic: Stem Cells & Adult stem cell injections for Peyronie's  (Read 188675 times)

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JS1991

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #800 on: July 05, 2018, 05:21:05 AM »

No problem! I was at about 10-15 degrees at the beginning, but I'm down to 5 degrees erect at the moment from manual traction. Keep in mind I caught this very early and have been applying traction daily since literally the first week of my Peyronie's symptoms. I do, however, have varying curvature in semi-flaccid/flaccid state, and as my penis fluctuates between soft flaccid and hard flaccid it will sometimes "curl up" in the direction of my curve temporarily. I hope to contain all of this and prevent it from affecting my erect penis; I heard flaccid symptoms are a sign of things to come in the erect penis. I also hope to stomp out this hard flaccid with fasting and trigger point therapy before my next injections, but that is a tall order. I'm trying my best.

I wasn't given exact likely outcomes for reduction, per se; this clinic that I went to does not specialize in Peyronie's, I just picked it because of the banking and their ability to treat my joint injuries as well as provide IV infusion, on top of the penile injections. If it were just my penis I was getting treated, I probably would have gone to Dr. Landers in California, who has way more experience treating Peyronie's with stem cell/prp injections, and provides shockwave treatment before hand. He does not bank cells, however.

hope794

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #801 on: July 05, 2018, 12:07:36 PM »

JS1991,
thank you for updating. I've got a couple of questions for you:
1. Did you suffer from ED?
2. Did you have a plaque or a fibrosis?

Both if you have plaque or fibrosis, did they say that stem cell would get rid of it?
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JS1991

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #802 on: July 05, 2018, 10:49:23 PM »

No problem! I have slight ED, but it is mainly caused by chronic pelvic pain syndrome. The symptoms of my ED are slight sensation loss along the CS/glans, which also don't fill with blood all the way (cs/glans = underside of penis/head of penis). I do have fibrosis in the top third of my penis, it has a "rougher" feel to it than the rest of my penis and is tighter and thinner, with the curvature coming from the worse side (the left side).

I also have a dent right under the head on the right underside of my penis, where the tissue and the urethra meet. Again, with a rough feeling indent. And upon inspection, it seems as though it is going away, believe it or not. The indent isn't as deep as it was last time I checked it (before stem cells) and the tissue doesn't have as rough of a feeling to it. The only other improvement I've seen since the injections, is in an odd symptom I have where my penis feels like it is almost dividing into three "sections", the left, center (top), and right, with a sort of line forming to separate them on each side. This line/separation seems to be less pronounced than it was.

They said the stem cells should help get rid of it, yes, but this was based on their experience with Dupuytren's contracture, which is identical to Peyronie's only located in the hand. There are, however, accounts of stem cells improving penile fibrosis elsewhere. I will keep everyone updated as things change.

hope794

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #803 on: July 06, 2018, 04:26:09 AM »

Thank you, JS1991. You're really kind, as always  ;)
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JS1991

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #804 on: July 11, 2018, 05:40:45 PM »

Here is a week two update: the denting under my penis head on the underside to the right is continuing to show improvement, which I am happy about. I'm actually surprised to see anything happening this early, as most results (as I have learned through research) are typically seen between 4-6 months out. Maybe since it was the only majorly indented spot on my penis, it is filling out with cells, who knows, only time will tell.

In other news, I have learned the earliest I can get more of my stem cells shipped to my house (they are currently being culture-expanded in a lab) is late August. So August/September I plan on self-injecting more cells into my penis, without the PRP. I'll update from this point forward on a monthly basis, aside from any major improvement (in which case I will post), and feel free to ask any questions if you guys want.

Edit: I forgot to mention that I've measured myself for a baseline, and I am still at exactly 7 inches length, with a girth of 5.5 inches at the base, and 4.5 inches at the tip under the head. As far as I can remember, before Peyronie's my penis was always the same girth from base to tip, so I consider that to be girth loss at the tip of an inch. It feels as though there is almost a sheath of fibrosis wrapped around the top third of my penis which has yet to calcify. As you can all see, I am doing everything in my power to prevent that.

hope794

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #805 on: July 11, 2018, 06:23:22 PM »

Thank you for updating us!!!
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Tony52

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #806 on: July 17, 2018, 05:31:25 PM »

JS1991 -  Thanks so much for taking the time to keep this forum updated on your progress. Personally, I'm very interested in your stem cell journey.  Congratulations on the early improvement that you have already noticed, and I wish you a full recovery in the days/months ahead.  Your determination and commitment to alleviating your condition coupled with your willingness to share your journey is admirable, and I believe you will reap the benefits of your effort while helping numerous others at the same time.  Best Of Luck, and thanks again.
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drew67

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #807 on: July 27, 2018, 08:44:15 PM »

JS1991, for best results I suggest getting your junk in broad spectrum AM sunlight from sunrise until UVB shows up to encourage autophagy, mitophagy, and apoptosis of bad mitochondria using IR and UVA light.  This can also protect you from side effects like oncogenesis
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Christopher1

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #808 on: July 30, 2018, 01:44:06 PM »

Any updates?
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curved

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #809 on: August 08, 2018, 04:17:07 PM »

Anyone else other than JS1991 have the adipose derived stem cell treatment?  I tried the PRP without any success and want to see if this is a similar deal.  I had an initial consult and the doctor agreed that PRP would not likely help peyronies but would not be bad in conjunction with stem cell treatment.  It is pricey (quoted $7300) for 3 ESWT treatments and the stem cell injection.  I have tried the ESWT in conjunction with PRP in the past but had to stop because it became quite painful when hitting the plaque. Doc said they would have to give me a lidocaine shot to block pain because the ESWT was essential part of the protocol.  This Doc works with Dr Lander out of California.  Thanks.
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Tony52

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #810 on: August 09, 2018, 03:48:29 PM »

Haven't heard from you in a while, JS.  Hope all is well.
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hope794

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #811 on: August 09, 2018, 06:46:29 PM »

I hope that JS is enjoying his new life - maybe he just wants to wait a while before updating us. I hope that he's improving day after day, and to hear his good news soon.
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JS1991

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #812 on: August 11, 2018, 05:42:24 PM »

Hello all! I did say I would be updating on a monthly basis in my last post from that point forward, so as not to spam this thread every week with posts (and it has been exactly a month to the day lol). I've been trying to enjoy my summer and take my mind off things. At this point, I'm a little over 6 weeks out, and everything is holding steady. Slow improvement in the most major "dent" I have under the head, no gain in length or girth, but no loss either (I've previously lost an inch of girth at the tip over the last 6 months). What I'm expecting out of this is the eventual removal of some scar tissue over time, which can't be done (I don't believe) with traction or VED; those therapies can only remodel existing tissue, not rejuvenate said tissue. This process I'm expecting to take some time. Also unrelated, but my torn meniscus in my left knee feels a lot better after the cell injections, the right knee only slightly better. I have been vaporizing marijuana since getting the cells (which is still a lot safer than smoking), but I will put a halt to that after my next injection and also change my diet.

I will continue to update this thread on a monthly basis. I'm actually going to be receiving a new round of injections sometime in September from my banked cells, I'm just very unsure as to whether I should attempt self-injecting without any training; I could potentially hurt myself. Any advice on that topic is appreciated. It's either self-injection, or pay extra to have a doctor inject it for me. These new cells are concentrated ADSC's, so it's as good as I can get without receiving umbilical cord cells, in my opinion. I'll update sooner than a monthly basis if I make any major decisions, but expect this to be a 1-2 year process before I draw any serious conclusions on efficacy (based off member RD's experience of actual plaques disappearing). As stated in previous posts, I plan on continuing to inject every 3-6 months. I've also decided to go ahead and get a VED while still in the acute phase instead of waiting for the chronic phase, based on some research that I've done. I've also read that stem cells + VED = a good combination. Lastly, I've also got a personal hand-held $30 ultrasound device that I'm going to apply as a substitute for shockwave therapy. And as always, thank you everyone for the well wishes!

drew67, thank you I will attempt to follow that advice!

To the person who said I am pioneering an empirical research-based approach, I appreciate the words!

JS1991

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #813 on: August 11, 2018, 07:38:24 PM »

Stem cell studies:

A collection of studies on SCs for Erectile Dysfunction by Dr. Tom Lue (human): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5209555/

A collection of studies on SCs for Peyronie's Disease (rat and human): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4893505/

Zahalsky's study on SCs for Peyronie's Disease (human): https://www.ncbi.nlm.nih.gov/pubmed/26414724

"Expert opinion on biological therapy" for Peyronie's Disease: https://www.ncbi.nlm.nih.gov/pubmed/28274142

Stem cell "homing" with ultrasound (with collection of studies): https://www.fusfoundation.org/mechanisms-of-action/stem-cell-homing

And I'm still searching for that VED + Stem Cell article, will post once I find it.

JS1991

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #814 on: August 13, 2018, 05:23:35 PM »

Just wanted to update, I measured myself in preparation for VED which I am starting this week. This is the first time I've measured my erect length and girth since about five weeks ago. I'm happy to report that although my length has stayed the same as did my girth at the base, my girth at the tip has improved from 4.5 to almost 5 inches, which is about a half inch gain! I've measured multiple times to ensure that this is correct. That, coupled with the slowly disappearing major dent under my head is promising. I still have all the scar tissue, but I can't complain with those results. Looking forward to starting VED and getting my next round of injections, this time culture expanded/concentrated!

I'll appeal to you all for help once more on something as well: Does anyone have experience self-injecting medication into their penis? It looks easy, just avoid the nerves running along the top and the urethra at the bottom, and stick it in one side or the other at an angle. But without proper training from a doctor, am I taking too much of a risk? I can get culture expanded doses of my stem cells shipped to my house on ice for $500 which is very cheap, and I'd prefer not to have to find a local doctor to pay to do it for me, or fly back to Florida. The clinic even offered to FaceTime with me during my self-injection lol. Any advice is appreciated!

Kerze

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #815 on: August 22, 2018, 12:59:32 PM »

JS, I don't think you should try this by yourself. This is your penis you're talking about...a few bucks more certainly will not harm your wallet. I'm literally praying for your recover and I think to the day stem cell therapy is the only treatment that we can put some hope on, in order to get rid of Peyronie's. I've already made my mind about choosing this therapy (intend to do in Panama with Dr. Riordan) but I'm having a really hard time to find a doctor to back me up in Brazil. It seems they think this is some kind of witchcraft or anything but medicine.
Well, I'll come back when I had more info.
Good luck mate!!

 
 
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Gabriel

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #816 on: August 22, 2018, 03:27:37 PM »

Hey JS,

I don't bloody know how I missed your recent update on this thread, which I just read: congratulations mate, that is AWESOME results and perspective! Honestly, I don't want to be too optimistic, but if you had a significant girth increase/recover in so little time following your injections, I absolutely don't see how thorough VED and traction could not do further wonders on you. That's all I wish you!!

Keep us up-to-date man, you are the future  8) :D
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pey ron

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #817 on: August 23, 2018, 04:16:43 PM »

so these results were due solely to stem cells? amazing! How much did it cost so far?
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Tsanchez12369

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #818 on: August 23, 2018, 08:49:41 PM »

I’d at least have them lead you through the process on skype if they’re willing.
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JS1991

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #819 on: August 24, 2018, 02:50:40 AM »

Kerze, Thank you for the advice, I am leaning towards it. I spoke with the Stem Cell Institute in Panama. They specified that they do not offer specific injections for Peyronie's Disease. They told me they could give me a shot in the knee for arthritis as well as an IV infusion for $25,000. I recall you saying you had other issues so it still might be beneficial for you.

Gabriel, Thank you! I am excited to mix all of these treatments together.

pey ron, I would say so, yes. The dent under my head had a very rough feeling to the tissue and dipped in like a bowl, on the right underside where my tunica ends and my spongiosum begins. It now is shallow and feels smoother. There is literally nothing else that I can attribute to this, at least in my mind. Regarding girth, I purposely measured myself before VED and before I restarted oral medication/supplementation (including Cialis) so as not to affect the outcome (you can check my timeline). When I measured myself days after my stem cell procedure, I did it repeatedly, and I repeatedly got a measurement of 5.5 inches at the base and 4.5 inches at the tip. I now measure myself, again, repeatedly, and my base is still 5.5 inches, but the tip is about 5 inches girth. I believe this discounts any possible incorrect measurements, which I was afraid of at first. I've gone through every scenario in my head to possibly attribute these effects to something else because I do not want to give anyone false hope, but this is what has happened to my penis. I'm personally a bit in shock myself, as I've been vaporizing marijuana and even had a few drinks and did not expect to see these results, but they do line up with the 4-5 week out initial estimate of noticeable changes after the therapy. I know I am a bit of a guinea pig here, so there is my testimony. I'm getting more injections soon, so we shall see if things keep improving. I also think getting these injections in the acute phase was crucial. And I further believe that if I combine a round of injections strategically with shockwave therapy, water fasting to induce autophagy followed by a ketogenic diet with intermittent fasting, complete abstinence, Pentox, Cialis, supplements, VED and manual traction, I can rid myself of the disease completely. At least, that is my theory after extensive research. The cost so far was $6,000 for the initial liposuction/blood draw with stem cell/PRP shots, +$3,000 to bank my cells to be culture expanded. I also got $500 off for applying through a promotion, so grand total that I've spent on my penis for stem cells is $5500 if you don't include the IV/banking. At this point we're looking at $500-$1000 per shot depending on if I self-inject or have a doctor do it for me.

Tsanchez, They are willing to FaceTime with me. Penile injection training is a two-appointment process, the first of which they inject you to show how it is done. I've already experienced this when I received an ultrasound, and again when I was injected with stem cells, so that base is covered. The second appointment would be you injecting yourself under their guidance, which I suppose the FaceTime could substitute for. I'm still very unsure what to do, I need to call around and see the closest place to me that can inject and their pricing and I will probably go from there. I'm also considering just going back to Florida as it was a nice little vacation when I went in June, but I have a business to run and it is hard for me to be away from New York. Regardless, time is of the essence here, as I am still in the active/acute phase; I believe I can fit in at least 1-2 more rounds of injections (September and December) before it turns chronic (they must be spaced 2-3 months apart to avoid overload of active cells).

Werther

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #820 on: August 24, 2018, 08:17:15 AM »

Hi JS. If I remember well, you said that you were dealing with some minor venous leak. Did the injection improve it or do you feel like it stays the same, as it was before?
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JS1991

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #821 on: August 24, 2018, 04:22:00 PM »

Hey Werther! What I thought was venous leak turned out to be chronic pelvic pain syndrome/chronic prostatitis, which causes the glans (head) and corpus spongiosum (underside) to not fill with blood completely during erection (as well as hard flaccid). It has not helped those symptoms out at all though, and it isn't caused by venous leakage, so I cant help you with that question, sorry!

Tony52

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #822 on: August 25, 2018, 01:06:39 PM »

Thanks so much JS for all the invaluable information you continue to provide on this forum.  You're helping a lot of people.  My question:  Are you aware of any reported cases where stem cell therapy proved beneficial in the chronic phase?  Thanks.
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JS1991

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #823 on: August 26, 2018, 09:06:30 PM »

Tony52, You're welcome, that is what I always aim for, and is the reason why I created the detailed timeline that I did: to enlighten/help as many people on this disease as possible.

Off the top of my head, I do not. I'm going to have to look back through studies to see if they specify anything. I do know that Dr. Landers has said that there seem to be improved results in patients in the acute phase, but if I'm not mistaken our own member "rd" was in the chronic phase when he received treatment. You can read through the first few pages of this stem cell thread to find out.

pey ron

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #824 on: August 27, 2018, 02:24:10 AM »

JS1991:

- did they have you sign any informed consent form?
- if so, what risks were you informed of? was cancer one of them?
- how does one get rif of chronic pelvic pain syndrome/chronic prostatitis?

thank you!
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JS1991

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #825 on: August 27, 2018, 05:04:50 PM »

pey ron, I did sign a few forms although I don't recall if any were specifically "informed consent" forms. From what I read as I glanced over what I signed, I believe cancer was mentioned, yes. It also noted that the chance was extremely small, and I did my own research before going in for treatment. The only major cancer case I'm aware of is the famous one where a man had embryonic stem cells injected into a disc in his lower back and it started growing teeth, lol. Embryonic cells are now rarely used because they have that chance (note there as a difference between embryonic, amniotic and umbilical cells). The only chance I can see of myself getting cancer of any type is if I start smoking two packs of cigarettes a day and drinking alcohol all day or something that actually causes cancer immediately after receiving therapy, which in turn could have an increased chance of affecting me because of the high number of stem cells in my body that are susceptible to turning into new cells. We don't want to turn these stem cells cancerous. My post-procedural instructions included in all caps: "DO NOT SMOKE. EVER." They also advised me against drinking and eating badly; they recommended a ketogenic diet with intermittent fasting, which also happens to be a suggested diet for Peyronie's by prominent members of this forum.

To rid oneself of CPPS/CP is a difficult process. It isn't a well-researched affliction at the moment, unfortunately. From what I've gathered through research, it has been defeated a couple of different ways. Here are 11 cases of hard flaccid recovery: https://www.pegym.com/forums/penile-anomalies-injuries/112678-11-hard-flaccid-full-recovery-cases.html which mostly consist of physical therapy/therawand, which involves a finger or a little tool going up your butt to release trigger points. Abstinence from all sexual activity seems to be the next most common theme for recovery, with our own member NeoV using it to successfully rid himself of the condition as well as others. Abstinence is key! You want to relax your pelvic floor muscles, NEVER clench them (kegel) and try to stretch your pelvic floor out and do reverse kegels. Traction also helps with hard flaccid, as do some different essential oil mixtures. Finally, there have been a couple of men who cured themselves with water fasting. The idea is that after water fasting for a time, all the muscles in the body release/relax and it also kills inflammation as well as inducing autophagy (good for Peyonie's). This is the best example I can give you: https://www.pegym.com/forums/penile-anomalies-injuries/54162-hard-flaccid-recovery.html As for a cause, well I got my case from intensely clenching my pelvic floor for hours at a time while having sex high on stimulants, lol. This caused my pelvic floor muscles to tighten up and my prostate to become slightly enlarged and inflamed (feels like I'm sitting on a golfball). This also caused my glans/corpus spongiosum to become partly deflated. Note that the urethra runs through prostate and the corpus spongiosum runs through the perineum (pelvic floor) so I believe these muscles tightening up cause said symptoms.

I haven't gotten around to applying the trigger point release or the diet, but abstinence shows a noticeable improvement for me, as do reverse kegels and not sitting for too long. I even got myself a "donut" cushion meant to relieve pressure on the pelvic floor/prostate while sitting. If you have to drive for long periods of time and you have seat warmers, that is soothing as well (as is any heat therapy applied to the area). Also, the leading community on hard flaccid (hardflaccid.org I believe) claims to have found the cause of hard flaccid (pelvic floor dysfunction) and is now closed under a paywall to access. If you sign up you receive a book that is essentially a collection of all their knowledge on curing it, which they claim to have found, called "Hard Flaccid: Unraveled." I thought about buying it but I'm assuming it's just a lot of what I already wrote in this post and I think it's ridiculous that they're charging people who are suffering for their wisdom on the topic, that's like us charging new members to join our forum and offering them a collection of knowledge ("do traction, ved etc.) upon payment. Not to mention their forum has been down for months, so you don't even get that benefit. But I digress. Hope that helped!

suicidecomingsoon

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #826 on: August 27, 2018, 05:18:33 PM »

Hard flaccid- pegym yeah pelvic pain syndrome
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JS1991

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #827 on: August 27, 2018, 05:24:14 PM »

suicidecomingsoon, Hard flaccid is one of the main symptoms of CPPS, so my linking of those articles was appropriate given the limited amount of information on the topic; come back to me if you have something better, I've literally spent dozens of hours researching it. Another hallmark symptom of chronic pelvic pain syndrome/chronic prostatitis is pain after ejaculation. Also I'm speaking of nonbacterial prostatitis here, but it is all connected. The onset of my painful, tight pelvic floor coincided exactly with my hard flaccid and deflated glans/cs and things that improve one thing improve all others. My doctor backs me up on this. Most of what is available on the topic that comes from the internet comes in the form of "hard flaccid" and "soft glans" recovery threads. pey ron asked, I gave the best info I have to offer on the topic.

JS1991

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #828 on: August 31, 2018, 04:51:18 PM »

Back on topic, I just spoke with US Stem Cell Clinic again. They can only administer 3 doses of concentrated cells at a time otherwise it is too much for your immune system, so I'm splitting one shot between both of my knees, one shot into the penis and another shot straight into my bloodstream. They charge $500 for the first shot and $250 for every one after that since it's a return visit, and another $500 per dose, so that comes out to $2750, plus air travel, hotel and food to get this done again in Florida. The penis alone would be $1000 and this includes PRP. I'm also considering getting the one-time $600 sample treatment of GAINSwave in New York the day before I fly out to Florida, because it helps the cells home in to the area treated with ultrasound. That is, if I don't just buy the damn ultrasound machine myself for ~$2000 (cheaper than the 6-session package).

I tried asking one of two doctors I know of in New York that do these procedures for pricing, and it was almost double so I might just take the mini-vacation and go back to the clinic. I'm aiming for late September/early October for the treatment. Also, I have a few specific spots on my penis that I'm going to have them target as injection sites for improvement. I'll update again when I have more info.

Christopher1

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #829 on: August 31, 2018, 08:33:02 PM »

Amazing!
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hope794

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #830 on: September 01, 2018, 07:32:25 AM »

Thank you for updating JS
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Gabriel

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #831 on: September 04, 2018, 01:25:20 PM »

Hello boys,

Sorry for the late answer JS, but I read with huge interest what you posted. It has been crazy for me to realize that your story about CPPS is almost word by word what has happened and still happens to me.

1) About this, I won't make a long answer, but I wanted to mention that:
- The circle cushion did not work at all for me (it was a cheap Amazon one though);
- Practicing yoga significantly helped;
- Practicing abstinence, especially from masturbation, helped A LOT;
- Totally stopping coffee, tea, nicotin (even from vaping), reffined sugars helped A LOT (avoiding alcohol helps a great lot too, but I just can't stop from going out with my friends once a week);
- After sawing around 10-15 traditional doctors 5 years ago (urologists, phlebologists, gastro-enterologists, etc...), I saw 2 specialized therapists over the last 6 months: one who gave me exercises I was too lazy to apply, the other shove a finger up my butt for 15 minutes 2 times in 2 months... I can't tell so far how much it helped, but it does not seem to have done much more. Maybe I should go back to them though... Will see later, for the moment I already have my PRP/HA injections to focus on, and have a great bunch of work.

--> Anyway, even if I keep the symptoms at bay, I'm still not clear at all from this CPPS mess. I'll surely take some new measures in a few months, when I have more time and am (hopefully) out of the acute phase. And in this, your posts are really helping JS, so thanks a lot!

2) About your situation, I sincerely rejoince from seeing that you have such good perspectives. I was also considering investing in a gainswave machine, as for me it had done wonders on pain and EQ (but ephemeral wonders...); I may do it if my 2-4 last PRP/HA shots don't get me out of this bloody acute phase.

Anyway, thanks again for updating us, and all the best!!!


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JS1991

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #832 on: September 04, 2018, 09:39:04 PM »

I'm glad that the research I've done on CPPS has helped you, it's a hell of a condition. I feel like if I can clear those symptoms up the Peyronie's would be much easier to handle.

Regarding shockwave machines, the big question I have is: Will we be able to operate them properly/efficiently? I've never had the treatment but I planned on observing what they do. Do we know the setting to put it on, how long to go? I feel like I can do it, but I want to be sure before I buy one; I have to either do that or sign up for expensive treatment before my next round of stem cell injections.

Gabriel

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #833 on: September 05, 2018, 04:02:57 AM »

That is indeed a big question JS; I have the same interrogation.

What I plan to do about it, is taking some day another appointment with my "first" uro who treated my with the lithotripsy, who is very nice and friendly, pay him for another session, and ask him about all the settings, techniques and precautions we have to know while doing this. I think and hope he'll answer frankly, as I was one of his most insoluble cases, and he seemed to be extra kind and comprehensive...

Of course, this is a long-term project; but anyway, I'm quite sure anyone can use a gainswave machine on its own (it's basically rubbing your junk with a spiky shower head), starting with the recommended power and applying it for no more than 2 minutes every week, then 3, then 5, etc...
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curved

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #834 on: September 13, 2018, 02:04:09 PM »

Just wanted to let the Board know that I underwent the SVT stem cell treatment today and will keep everyone posted on progress.  The recommended protocol for me was week 1 ESWT (4000 impulses); week 2 (today) ESWT (10,000 impulses) Harvest stem cells and inject into plaque and IV stem cells; week 3 (next Thursday) ESWT (10,000) impulses.  The doctor said that if it is a relatively newer plaque that still has some inflammation you can see results in 2-4 weeks.  If it is an older plaque it may take several months.  Additional thoughts were to take a nitric oxide supplement (I am taking NEO40) and VED at least 1x a day for 15 min, preferably 2x day for 15 min.  Will keep everyone posted and feel free to ask questions.
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quagmire333

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #835 on: September 13, 2018, 07:55:39 PM »

What treatment center is doing this? Good luck...I had no luck
with amniotic stem cell injections (Zahalsky method)
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JS1991

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #836 on: September 14, 2018, 04:45:55 AM »

curved, What was the protocol given regarding VED, and did your doctor explain why the VED was important for use with the stem cell procedure? Do you know the exact settings of the shockwave machine they use, and do you think you could operate one by yourself (I want to buy one and don't know how to use it)? Where are your plaques located, what kind are they and where/how many injections did you get? Where are you getting the procedure done and did they use PRP? Price/cost?

Also, I suggest a natural diet (ketogenic is great) with some sort of fasting if possible. Not only does it help Peyronie's by itself, but it also helps the stem cells do their work. Do not drink or smoke and abstain from masturbation/sex for the week immediately following injection. Good luck!

curved

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #837 on: September 14, 2018, 09:23:39 AM »

quagmire... my procedure was done by Innovations Medical out of Dallas.  They are part of the same program that Dr Elliot Lander created.  As far as i know Lander's facility and this one in Dallas are the only two that are doing SVT stem cells.  The key difference between amniotic and SVT is that SVT is harvested from your fat.  Supposedly it has a better "take" rate than amniotic.  Will keep you posted on any progress
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curved

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #838 on: September 14, 2018, 09:41:26 AM »

JS1991-- great questions and I will do my best to answer them.  In regards to VED the doctor gave me a fairly significant different protocol that was has been recommended by other on the Board here.  He recommended to start slow for the first few minutes but get to full engorgement (not so much that it is painful) and to leave it at full for 15 minutes.  He recommended this 2x per day if possible but certainly at least 1x.  He views this "penile therapy" as crucial to ongoing treatment.  The hope being that the stem cell treatment can reduce the curvature and the ongoing VED can help maintain any progress from the stem cell injections.

I do not know the exact settings but will try and find out.  I am highly confident I could operate it myself should I desire to get my own machine.  There are a lot of ESWT programs out there now... "Gainswave", "Big D", etc. I had tried ESWT as part of PRP injections I tried several months ago and had to stop because it was very painful when hitting my plaque.  The doctor explained to me that if you are using a new machine (less than 100-150 uses) the setting has to be adjusted down because the impact will feel much more powerful until the machine has been "broken in".  The ESWT I used as part of the stem cell protocol was much more tolerable.  Also it is important to consider what type of head on the machine is being used.  Doctor felt that the head that looks more like a small gun/pistol was more effective than the one that looks like a wand/steam cleaner (hope that makes sense).  I will try and get exact settings.

I have some significant plaque that is a bit of a horseshoe shape that is calcified on my right side (approximately 1 inch long) and then extends over the top (approximately half an inch but not calcified) and then a small amount on my left side.  The top part is what I am looking for improvement on as my curvature is upwards approximately 20-25 degrees.  I received 2 small injections of a numbing/blocking agent to help with pain of stem cell injections. I then received 5 injections of stem cells around the plaque(s). He then gave 4 more injections directly into the plaque (focused on the top) where he is also trying to break up the plaque.  My cost was $7300... which is pretty steep but if it works then obviously worth it.  They did not use PRP... I have had that in the past with no success.

I have been practicing 16/8 fasting for a few months but need to get a bit more disciplined on that.  Have also been back and forth with Keto for several months and currently focused on low carb but probably have too much protein to meet the definition of Keto.  Will try and get back to you with the settings.
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JS1991

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #839 on: September 14, 2018, 05:41:08 PM »

Excellent information, thank you for the thorough response. I knew VED could be used in conjunction with stem cells to improve their benefit but I couldn't find the articles that I read so I'm glad that you've shared that; I plan on using it for my next round of injections. As to the shockwave procedure, if you can find out the settings I'm planning on buying one and going off of what you say, so you would be saving me a lot of money and it would be much appreciated lol. The 16/8 fasting is great as is the low carb, keep that up it will help. I also believe water fasting for days or weeks can not only help reverse Peyronie's by itself but also greatly enhance stem cell treatment.

So you're using Cell Surgical Network? Interesting, did you opt to bank your cells? By the way, it is "SVF" not "SVT". This stands for stromal vascular fraction. It is a source of mesenchymal stem cells as well as various growth factors; the banking process consists of isolating and culture-expanding the stem cell portion of the SVF. I'm very happy someone else has decided to go through with the procedure, please keep us updated!

Also I forgot to ask: Are you in the acute phase or chronic phase?

curved

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #840 on: Yesterday at 09:29:37 AM »

JS-  I have requested the settings of ESWT and will pass along as soon as I get them.  I am in the chronic phase and have already tried Xiaflex (4 cycles of 2 shots each).  Thank you for the correction on SVF.  I did not bank any of the cells but the doctor indicated that if we needed to do another round the price would be significantly cheaper.  Will keep everyone posted.
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Gabriel

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #841 on: Yesterday at 11:52:40 AM »

Hey Curved,

Thank you very much for your long post, which I read with huge interest, and for your presence here!!

Keep us informed ; we wish you the best!!!
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curved

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #842 on: Yesterday at 11:55:36 AM »

Thanks Gabriel... will do
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JS1991

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Re: Stem Cells & Adult stem cell injections for Peyronie's
« Reply #843 on: Yesterday at 05:13:19 PM »

Thanks curved! If you could also get the model of machine that they use, that would be great! Sorry if I'm being a pain in the a$$ lol.
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