Stem Cells & Adult stem cell injections for Peyronie's

[koolx]

hey yyy... hope u had a good prp session with no rpoblems..

[james1947]

Sorry, not connected to the topic.
It will be nice that also the native English speaking people will use the speller before posting. The posts will be more understandable especially for the not native English speakers.

James

[yyy]

Hi guys

What I did was a combo stem cells + prp. They have a new machinery that divided blood from fat tissue, then the doctor injected both into the lump. At the moment I feel some pain just when I touch the lump. Bend seems to be already reduced a little but erections are not complete at the moment, I mean it does not lenghten as before but I think it's due to small bruise I got

[op]

Hi, i've found interesting article on other forum:
High Rates Of Sexual Dysfunction Reported After Stem Cell Transplantation - The MDS Beacon

p.s. 48% reported dissatisfaction with their sexual function after stem cell transplantation.

Any comments from already did the therapy?  

[funnyfarm]

myelodys­plastic syndrome ??

[op]

logically this is same stem cell therapy & healing process, just disease is different.

Sorry, not connected to the topic.
It will be nice that also the native English speaking people will use the speller before posting. The posts will be more understandable especially for the not native English speakers.

James

Sorry James, I guess it was for me. I'm not native. Also, I was on the emotional rush because of my problem but wanted to help about jeqing dangers... I've deleted these messages. because didn't liked these too. (currently)

[Hawk]

OP, That is a pretty interesting article on sexual dysfunction after stem cell transplantation.  It is potentially a huge issue for a treatment that raised so much hope for people with many different conditions.  It also seems they were talking about all stem cell transplant not just for MDS

Thanks for posting that link

[koolx]

Hi, i've found interesting article on other forum:
High Rates Of Sexual Dysfunction Reported After Stem Cell Transplantation - The MDS Beacon

p.s. 48% reported dissatisfaction with their sexual function after stem cell transplantation.

Any comments from already did the therapy?

so hold up.. does this men that we're all in trouble if we go for stem cell treatment?? i was actually thinking about getting stem cell treatment as part of a clinical trial. but now i'm having 2nd doubts as per the article. i dont kno what to do now.  

[rd]

I had it coming up on 2 years ago. I haven't had any of the symptoms mentioned in the article

[james1947]

OP

It was not for you, it was for native speaking English that sometimes missing letters in they post makes us, not native speaking English not to understand the words.

James

[koolx]

has anyone here had an hour glass effect on their penis at all?

[Hawk]

If you mean anyone on the forum the answer is hundreds.  That's why there is such a phrase.  It is named because it is a common manifestation of Peyronies Disease deformity.

[koolx]

If you mean anyone on the forum the answer is hundreds.  That's why there is such a phrase.  It is named because it is a common manifestation of Peyronies Disease deformity.

hi hawk.. i got an hour glass deformity after taking a medication called respirodol. much of the formation left.. but an impression of it still remains. i was wondering if maybe stem cells can correct it.. and just to let u know, i dont have peyronies or fibrosis

[skunkworks]

If you mean anyone on the forum the answer is hundreds.  That's why there is such a phrase.  It is named because it is a common manifestation of Peyronies Disease deformity.

hi hawk.. i got an hour glass deformity after taking a medication called respirodol. much of the formation left.. but an impression of it still remains. i was wondering if maybe stem cells can correct it.. and just to let u know, i dont have peyronies or fibrosis

It would be surprising if there was no fibrosis, isn't the fibrosis what causes the hourglass effect?

[Hawk]

Koolx,

You say you have hourglass deformity, that you have a 20 degree curve, that you are interested in Xiaflx trials, then you say you have no fibrosis or Peyronies Disease.  What do you think is causing your penile deformity if it is not plaque?

[Hawk]

Koolx,

You say you have hourglass deformity, that you have a 20 degree curve, that you are interested in Xiaflx trials, then you say you have no fibrosis or Peyronies Disease.  What do you think is causing your penile deformity if it is not plaque?  Why would you even be on a Peyronies Disease forum making 5 posts if you have been diagnosed not to have Peyronies Disease or fibrosis  All of these facts just don't add up or fit together.  If you did actually develop a 20 degree curve and an hourglass deformity you do very very likely have Peyronies Disease.

[koolx]

Quote, in violation of forum rules, removed by Administrator .

i dont have peyronies and i dont have fibrosis. thats what my uro says after the doppler tests results revealed none of those things. he said i have scar tissue which caused the bend. if u want to challenge him on this, since u sound a bit antogonitic about it, youre more than welcome to and i'll furnish u his number and u can call him to discuss it. and if u read thoroughly, i said my hour glass is mostly gone, what remains is an impression that i can feel. therefore, i dont very very likely have peyronies disease. i'm sure since hes the doc i believe he would know more about it than anyone on a forum.

[rellisacct]

Hey All,

I would like to add to YYY's posts here as I just got my first PRP treatment yesterday. I will say that for the first time in about 2 months I got a natural erection last night. It felt a bit firmer than normal and the fairly large indention appears already to be filling in. I'm shocked after just a little over 12 hours that I've had this type of response. I'm hoping that it will stay this way and that it's not a short term thing. My next treatment will be in 2 months if all goes well with this one. I'll stay up to date as things progress.

[james1947]

rellisacct

Good news
Pray for you that things will just get better.

James

[Hawk]

Koolx,  Consider this a warning. Do NOT hit the quote button to reply to a post that is right under the post you are making.  It repeats the entire post again.  The forum rules address this.  You have be told about this before but I notice that most of your posts have quotes in them except the ones where I have taken the time to remove them.  When you want to post click on the Reply button.  

If you do not understand the issue then just ask and we will do all we cant to make it clear.

Hawk

[koolx]

hey rellisacct.. glad to hear about a firmer or firm erection. hope its not a placebo in your head. how were your erections before treatment? and did treatment involve stem cells also?


yyy... how are your erections coming along so far?


ok hawk.. no prob.. but how many posts after i see a quote i want to post should i quote it?

[Hawk]

7. Limited Use of the Quote Button - Normally we should use the REPLY button to reply to a post.  We can use the quote button over a members post only when we want to quote a small portion of another post.  We can also use it when responding to anything that was previously posted BUT NOT when we are responding to the the post immediately before our own post in the same topic.  When we do use the quote button we should trim the quote down so entire posts are not repeated. That way the reader can more easily follow the conversation. /b]  

I think the rules are kind of clear.  We always give the benefit of the doubt here if you are in a grey area but as you can see by any reading you were outside of any grey area, especially since I posted before and brought this to your attention.  I can only guess you have never read the rules so it would be good to click on the link and read the entire document.

[rellisacct]

Thanks James & Koolx, I appreciate the thoughts and prayers.

Koolx - some quick background...I've had this crap for 11 years and have had various luck with various treatments but nothing lasting. This change is definitely not a placebo as I have proof of the before and after so far. I had a large indention in the left corpora tissue, mid shaft and post injection the indention has noticeably shrunk. I have had major girth shrinkage all along the right and left shaft of my penis, but it appears that the indention might be improving and this has definitely improved the erection. Before injection, very weak erections, none natural (if you can call them erections). Post injection (I'm supposed to try to not have erections for a week) I can't help but get 2 or 3 a night and they actually wake me up because I'm not used to that.

No stem cells, only PRP right now. I'm looking at possibly adding stem cells to the mix.

I did have turtle necking and tightness to the left most of the time...now the tightness is on the right which shows that there is tissue growth on the left.

I have also significantly improved my diet over the past month which may be a factor in how well the tissue is responding to the injection, but that's just speculation.  

[koolx]

hey rellisacct.. very content to hear this good news from u. i imagine the quality of ur erections post prp has been very firm and penetratable for sex as you imply. i got 3 questions for u:

1 - my penis girth has shrunk in size also. as a result, my erections are weak. i read that it could be due to low testosterone. but not sure. did u have low testosterone at any point?

2 - can u tell me where u got this prp treatment from? and please tell me also the cost.

3 - do u have spontaneous erections during the day?

[rellisacct]

Thanks koolx, I hope that the change is permanent and not just teasing me like some other treatments I've tried. I think that my uro was a one shot one kill kinda guy because he nailed the plaque dead center. He basically put the full dose of PRP into the one area of indention and I can tell a difference in the tightness of the tissue there.

1) Based on blood tests, I don't have low T. My penis has been through hell with sex injuries as the first time was girl on top and she came down on it wrong..."snap". Other times smaller injuries due to the penis not being as rigid as it was pre-injury. Basically I think the plague runs through both the right and left shafts all up and down the penis with worse areas than others.

2) PRP treatment was from Wake Forest University with Dr. Terlecki. I highly advise that anyone in the Southeast go see him. If nothing else, he will inspire you as he was one of the main associate researchers behind the rabbit tissue engineering replacements. Cost I think is $1,500 a pop, but I'm going to try to work with him on that. That's not exactly cheap for the small area of improvement. It would take about $30k to cover everything that I would probably need to get done to get back to perfect function at this rate.

3) I don't during the day but at night I do. I'm thinking that if he basically just did a huge carpet bombing of my penis with PRP injection after PRP injection that my functionality could easily improve by 50% at this rate. I'm just extremely excited that the tightness has gone from the left side of my penis to the right and that the turtle necking has decreased a good bit. I actually sometimes have a non-hard flaccid penis whereas it usually is hard even when it's supposed to be flaccid (non-erect).  

[yyy]

Today I saw my urologist for an ultrasound 3 week post.
He told me he did only a stem cell procedure not together with prp: he divided the lump in two parts with the needle then injected the stem cells between the two parts. He said my situation is still in progress at least for a month.
Plaque seems to be more or less the same, as well as the bend, but I got some improvements about quality of erections and tissues stretching; for example morning erections came back nealry every day after the treatment.

[funnyfarm]

It seems like some of the PRP stem cell reports are encouraging lately.  Thanks for the info guys !

[rellisacct]

YYY, glad to hear that things are progressing for you as well.

Do you know why the uro decided to just do stem cells vs a stem cell/PRP mix? I've been looking into adding stem cells and not sure what the uro's are trying to gain out of just doing stem cells or just doing PRP vs using a mix of both.

[koolx]

hi rellisacct.. i'm confused here. u said that treatment was $1,500. but then u said that it covers $30,000?? i dont get it.. do u mean that u have to go back for treatments totalling $30,000? that wouldnt make sense. also, why didnt u opt for stem cell treatment also?

one last thing.. i contacted Dr. Terlecki.. one snooty bitch of a nurse was disrespectful to me. she didnt know what treatment approaches he uses though she said she his nurse, then when i asked to speak to another nurse with more info, she got mad and exclaimed to her colleague that i "was annoying her." i was then transferred to another nurse. i told her about the disrespect of the other nurse, and she took it lightly. i dont understand what hospital this is but its staff are completely out of control. anyway, i'll try back again tomorrow.

yyy, its good that your erections are coming back to life again. i appreciate u telling us that. but u had stem cells done 3 months ago. i think when u said 3 weeks in your last post that it was a typo. btw, do u think your erections are firm enough for sex? do u get erections in the day also?

[rellisacct]

No, let me clarify. Each injection runs about $1,500 because it's not covered by insurance as it is an expiremental treatment. The one treatment was very helpful, however, it's not an absolute cure. I was just making the point that if I needed a ton of injections, that it would be extremely expensive. It could be $10,000, $20,000, $30,000 or who knows. But trust me, if I can get a response like this from each injection, then I would do whatever it takes to raise the money.

I wasn't given the option for stem cells with Wake Forest. He just offered to try the PRP injection. If I decide to start up with stem cells too, then I'll have to go to the California Stem Cell Center that a few others have spoken about. I still want to do a little more research on that first.

As for the nurses, I'm sorry that you had to go through that. They have been nothing but respectful to me each time I have been there. Maybe they were extremely busy or just had an off day.  

[yyy]

My uro told me that this kind of stem cells using this machine should be 10 times more effective than PRP so he decided to do it.

My first stem cell was in November but not with this new machine and not directly into the plaque, my second one was 3 weeks ago.

Next time I will do only some PRP injections because he said there's no need to repeat a stem cell treatment at the moment, PRP can be enough.

I remember Im using VED, traction and supllements such as Accoleit and vitE/coQ10/Propolis plus Diclofenac spray twice a day

[Crooked_Stick]

I was reading last week about bone marrow injections to heal ruptured lower back disks. Bone marrow taken from the hip is rich in stem cells and can be refined quickley using a centrifuge. It seems this could provide another source for stem cell treatment for peyronie's. Any thoughts?

[RoyHobbs]

I dunno. He's Boar certified? I've never trusted boars. Are the boars wild or in captivity you think?  

[rellisacct]

It's possible, but I don't know if bone marrow stem cells would have any extra benefit compared to adipose derived. I do know that I've read a few different articles stating that one reason bone marrow stem cells aren't used more often is because they are more difficult to harvest, more painful/uncomfortable to the patient, and you get way lower volumes of stem cells. It's worth looking into though.  

[koolx]

yyy, the new machine at the cali stem cell clinic is a shock wave machine. dr. lander told me that it stimulates the penis. he also said that it "stimulates" injected stem cells in the penis. from what i read about it, it does rehab the penis. but i highly doubt that it stimulates injected stem cells. maybe i heard him wrong when he explained it. he offers this treatment in combo with PRP.

but i had asked u before but u didnt reply.. are your erections penetrable enough for sex now? and were they too soft before u had the stem cell treatment?

also, this is a questions for everyone.. has anyone here had low testosterone prior to any treatment?

[LWillisjr]

I split this topic. It was going down the path of debating best and worst health care systems. Let's keep this one back on the stem cell topic.

[rellisacct]

I agree with lwillis, there seems to be some promising results from Stem Cell/PRP injections and we should focus on that.  

[koolx]

hi rellisacct,

1) how are ur erections coming along? any daytime erections yet?

2) i dont think i asked u about the quality of ur erections. hows the quality if u dont mind me asking?

[rellisacct]

Hey Koolx,

I can definitely tell a HUGE difference in quality of erections. The main problem I have is the scarring all along the shaft which keeps me from having a full thick erection like it used to be, but the erection quality has improved about 30-40% from pre-injection (much better bloodflow vs having a bottleneck). I can also tell that there has been significant thickening at the point of injection as opposed to the rest of the shaft which is great. Actually, where the injection was put was the worst part of my penis but is probably the best part now.

The only problem now is that there is still so much of my penis left to improve that it will be an uphill battle, but I'm finally for the first time in 3-4 years excited about my prospects.

No natural daytime erections yet, but if I think for a couple of minutes about the girl I was with this past weekend, then we have liftoff.

[yyy]

I also noticed a thickening of the penis in the zone of the lump. now shape seems to be more regular.

[damian]

hey rellisacct

What do you mean with "scarring all along the shaft"? Do you mean scar tissue over the whole shaft or just on several places?

[koolx]

rellisacct, great to hear the excellent progress. dont worry about the other stuff.. just remember that u recently just had this done so it takes time to heal further. and u can repeat prp sessions if u need to in the future which will enhance more progress if need be.

yyy, keep up the good work. ur progressing as well. very important.

i think within 5 yrs we'll alll see a major breakthrough with stem cells and prp regarding ED. no question about it.

[rellisacct]

Koolx, I really pray that you're right. If we can perfect the process, we all have a real shot at seeing some amazing things happen in the next few years. Maybe not a 100% cure but sometimes small improvements are all that is needed.

Ushtipack... It is kind of hard to explain. The left shaft has significant scarring from the base to the tip all along the shaft. There was a large indention before injection, but now that's gone and good tissue has taken over...woohoo!!! The right shaft has significant scarring at the base but expands better than the left side. The tip of the right shaft has no scarring. The result is 40% less girth but the length is still the same as before. Funny how this crap affects everyone differently.  

[funnyfarm]

Congradulations guys !  We could all use some good news around here !  You are brave and I thank you greatly for sharing your encouraging stories.   I can only wonder if one day this will surpass surgery as the preferred treatment for peyronies in cases where pentox does not help.  

I noticed that George started this thread just a short 3.5 yrs ago and at the time it was described as being just a little more tangible than science fiction.  Things have progressed very quickly !  

[chefcasey]

Well it's been roughly 3 months since my stem cell treatment and I'm sorry to say there is no change in my condition. Maybe it will take some more time, but Dr. Lander said I should have seen something, anything by now.  I'm also starting to think that my scarring is deeper than I previously thought, like along the septum, which may explain why I've lost only girth and not length, and if that's the case, that could be a reason to why the treatment may not have worked.  In any case I am disappointed but not surprised.  I knew full well going in that this is still experimental.  It's really nice to see at least that's its worked for others on here and I wish you all the best.  

[rellisacct]

Casey,

I'm sorry to hear that things haven't been improving for you at all. I will say that I am in no means close to cured by any stretch of the imagination, but I luckily have been able to see a tangible difference after just one PRP session. I personally think that there are 2 things that made the injection successful...

1) I significantly improved my diet about a month and a half before the injection. No sugar, no breads, no red meats, yes fruits, yes vegetables, yes lean chicken/turkey.

2) The full PRP dose went into one area (worst area). I didn't have multiple injections everywhere so there was a ton of growth factors concentrated in one place.

Maybe these types of things make a difference or maybe they don't. If you can afford it, I wouldn't give up just yet. I would atleast try the 2 things that I mentioned above before calling it quits.  

[koolx]

i noticed something of significance here. on one hand, casey had both stem cells and prp. and rellisacct had only prp. in casey's case, he didnt show improvement. in rellisacct's case, he shows massive improvement. i'm wondering if just prp alone is just enough. maybe its just better to just have prp and leave out stem cells.

how many of u had both stem cells and prp?? and let us know if u improved or not from this combo.

[chefcasey]

rellisact:

I also changed my diet before the procedure up to the present along the same lines (no refined sugars, no wheat, lots of organic fruits and veggies) as well as no alcohol or anything unhealthy.  I knew I should keep myself the best control as possible because at the time I believe I was the only one on here getting the combo(prp+stem cells).  Like you I also had the injections located in a concentrated area, with the doctor using roughly 40-50 passes with the needle.  I asked the doctor what I should do to try to increase my chances of success post-procedure and he said nothing.  In his words "the stem cells or going to do what they do, and there's no way to get them to do otherwise".

I understood that a good portion of men won't respond to this as the doctor told me, if we all did respond, we'd have a true cure for this disease and problem solved for us all.  He said the people who respond best are those whose disease or inflammation is most "active", because that's what really triggers the growth factors to go to work, if they don't sense an injury, they'll just assume its healthy tissue and the growth factors will be wasted.  I've had Peyronies Disease for over 2 years now, but technically it is still progressing but not as much, so maybe it was too late for something like that to be effective.  Either way I don't regret doing it as I would gladly give something a chance that has some real science behind to beat this thing than not try at all.  But do keep us posted on your progress and good luck!

[chefcasey]

koolx:

I don't want to conclude yet for sure that nothing happened.  I don't know, the body is complex and we're all different so it could be that its working slower in me than others.  I just wanted to update at the 3 month mark.  I also now suspect that the real problem is deeper in the shaft and I don't think the doctor got in that deep with the needle.  I will continue to watch and wait a few more months before I completely conclude that it was not successful and will keep everyone posted if something changes.

[funnyfarm]

Thank you for the detailed info from your doctor Chef.  Be patient and remember the treatment will be refined as more people are treated.