ARCHIVE: Verapamil - Injections & Topical Applications including Iontophoresis

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SteveW

Well, here goes.  Let the flaming begin.

There "seems" to be some improvement.  I can't tell much difference in the overall plaque mass, but the pronounced curvature when erect IS somewhat reduced.  Maybe 10-20% less severe than 8 weeks ago.  

Last week was injection #4, and it was a really tough, painful one.  I am not sure how many individual injections, but my Doc approached the mass from "underneath" injecting from the side of my penis, up into the underside of the mass.  For the first time, I actually verbalized the pain...by letting out a few very loud guttural sounds, which I am sure they heard out in the hall.  I jumped, squirmed and endured more injections of both lido cane and Verapamil.  I was sweating, crying and clenching my fists.  The Dr. kept apologizing and trying to say comforting words.  

After the treatment, he handed me a swab and told me to lie there applying compression for a few minutes until the bleeding stopped (it didn't, completely) and until I was composed enough to dress and leave.  For the rest of the day and most of the next, I felt as though I was in shock, which is the only way I can describe the after effects.

My penis was black, blue and purple for days, and then turned that really attractive yellow color as the bruising went away.

Not really sure this is working, but if all of this actually does at the very least, reduce the severe curvature to the point where I can perform sexually, I will submit.  I am going to finish the initial six sessions, analyze the situation and then my Doc and I will discuss where to go from there.  
 
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

kbmw

SteveW
Been there, done that. In fact it went on for two years. I was getting two hypodermics once a week at the end. Why did I continue? Because the Dr. kept saying "there seems to be some improvement." That line, IMHO, is fools gold. Plaque is forever changeable.

August posted his Dr. results without any clear statement of what "better" means. Those results are, again IMHO, no better than chance. And if one or two guys did improve they will tell you it was a result of the shot. There is no way in hell to know that. I just don't think there is any good evidence to support VI injections.

Are you by any chance from So. Calif.

SteveW

20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

kbmw

SteveW,
I thought perhaps we shared the same sadistic Urologist.

SteveW

Maybe they got their training at the same Medical School?  

Do Docs get together in the locker room and tell jokes?  "You wouldn't believe what I did to this guys penis today"..........................
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

Old Man

Special note:

I know quite a few doctors personally, and for the most part they do not relate their mistakes and/or boo boo's to other docs. However, they do at times tell funny stories about weird things that happen in the ORs. One doc friend told me that many things happen during surgery they have no control over and it makes it bad for them.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

august

Just finished my 5th tube of TV.   Now doing 4 treatments per day.

Right bend was 28.6 degrees before starting TV.   Now at 15.3 degrees.   I have 5 more tubes in my medicine cabinet.

August

SteveW

I am really confused and disheartened at the moment.  

Injection #6 is tomorrow.  Up until a few days ago, I honestly felt that the VI's were helping.  The curvature had been reduced in a very positive and visible amount.  However, over just the last week (4-5 days) or so, my erect curvature has become just as severe, if not more so than it was originally.  There is again some slight pain (discomfort?) when hard, but the overall size of the plaque mass seems unchanged.  

My question, if it really is one and not just self pity I guess, is whether or not anyone else has ever experienced such radical changes in their condition in just a matter of a very few days?  The original onset was just as sudden and this reversal so rapid that it is amazing.
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

bentley

I had seven  sessions of 10 mg at two week intervals. There was a time when I thought I didn't have to worry about Peyronies Disease because I thought I now had ed. It stabilized before the next injection. Also If you cannot leave the pressure wrap on for at least 2 hours after the tenderizing session, it seems to swell in the area and give the sense that the area is much worse. Two weeks after my last I have less of a bend and a smaller and softer plaque. Make no mistake, It did not fix it but it made it better. In two weeks after your last injection you will have a good idea of what's going to be going on. Good Luck

totheleft

Quote from: august on November 26, 2005, 10:00:26 AM
Just finished my 5th tube of TV.   Now doing 4 treatments per day.
Right bend was 28.6 degrees before starting TV.   Now at 15.3 degrees.   I have 5 more tubes in my medicine cabinet.

August
Hi. I used topical verapamil from Peyronies Disease labs for 6 months religiously twice daily as recommended by Peyronies Disease labs. Were you recommended TV by a uro? Did you start off with 4 applications per day?? How long have you been using TV??

dcaptain

Hey guys, I thought I would update the forum on the progress I've made thus far with Iontophoresis.  I unfortunately don't have that much to report, but since I said I would update the board I will...

I started Ionto with Verapamil on 10/20.  I've been doing approximatly 2 applications per week over these last 6 weeks or so, so I've had about 12 applications.  What's weird is that I have two small plaques, mostly dead center in the septum, one being more off to the right than the other.  As they are somewhat deep, the issue of getting the verapamil to them is somewhat more difficult than if the plaques were located on the tunica.  The curvature I have is to the left, which means that it's likely that something else is causing this left turn.  My doctor concurred that the plaque I do have is not likely causing the curvature.

As such, it's been somewhat difficult to guestimate *where* I should direct the Ionto treatment.  In an attempt to be as liberal as possible with it, I've basically moved the location of the Ionto treatment, rotating between a few set spots.  I do include those spots that would most likely deliver the drug to the plaque as well, although again it is unlikely that the plaque is causing my current deviation.

The results thus far have not been dramatic.  I would say if anything, it has improved my curve only slightly.  The plaques I have are still there.  However, things are generally more "loose" than they were - the curve doesn't seem as strong, and when flaccid there isn't the tightness that once existed.  Whether or not I owe this to the Ionto I cannot say.  The only other treatment I've been doing is heating with a heating pad that gets to approximately 100 degrees, infrequently.  It theoretically could be getting better naturally too.

I have about 15 more treatments to go with the Ionto, and I plan on asking the urologist for another round of treatment, falling under the "can't hurt" and the "I paid an arm and a leg for this thing so I'm gonna keep using it" arguments at the same time.  I will continue to update the board as to how it goes.  Unfortunately to date, I just don't have that much to report.  


Steve

It's been a while since I've posted, so I thought I'd let you guys know where I am...After looking at the co$t of Ionto, I opted to go with VI.  I've just had my 4th injection this last week.  So far, the injections don't hurt too much (the 3rd was a little rough), and the bruising goes away in a couple of days.  I wish I could say the same for my bend.  I've started a photo log weekly ever since I was diagnosed and started TV.  Compairing my first photo before any treatment, and my latest (which was a day after VI #4), I can see no difference whatsoever!  I'm on a 10mg VI once every 2 weeks, and my Uro says that if there is no change, he'll increase to 20mg for 6 injections.  I think I'm going to 'rest' about a month after the first 6 VI's are through to see if things settle down on their own.
Thanks dcaptain for the updates on Ionto...I'm still interested in this if it seems to help-I'm still trying to avoid the knife!
Topical Verapamil,
12 Verapamil shots (ouch!),
Now VED - Too many Weeks,
Still 70 Degrees :(

phil

Dcaptain,

I have been directed by my Uro to undergo Ionto using a steroid and verapimil.  The only problem is I can't find anyone that performs this treatment on a penis.  The physical therapy facilities do this on elbows for tendonitis, but not on a penis. Did you buy your Ionto device?  If so, where did you get it, and  did insurance help pay for it?

Thanks,

dcaptain

Phil,

Good question.  My doctor recommended Ionto to me - I'll send you his contact info (sorry, am not used to posting names of docs on the Internet, but if anyone wants his info just send me a message and I'll be happy to share!).  For a little background, here's my initial post:

https://www.peyroniesforum.net/index.php?topic=26.msg967#msg967.html
« Reply #66 on: October 20, 2005, 08:20:59 PM »

In my doc's practice, you essentially buy the Ionto device and use it at home after an initial training.  Unfortunately, it is not covered by insurance whatsoever, so you basically have to cough up the dough.  It's not cheap - almost exactly a grand.  I had to think long and hard about it, but I decided it had to be worth trying.  

So yes, in this instance, you basically get the device, the Verapamil, and administer it at home.  It's somewhat of a cumbersome process, but once you get the hang of it, it gets easier.  

I hope that helps - am happy to answer any other questions....

dcaptain

Hawk

How long does your doctor suggest you follow the iontophoresis treatment (outside estimate) ?

Are these items ever available on ebay?  It could be a way to recoupe some of the cost.  Maybe if it worked you would want to keep it just in case.  If it didn't work, maybe it would be a poor sales pitch.
 
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

dcaptain

Good question.  The doc said to basically do it 2-3 times per week, through the 30 vials of Verapamil prescribed.  So, that's roughly 12 weeks, assuming I did it 2.5 times per week, which would be about right.  (I've found that I don't necessarily use the entire vial every time, so I try to save some, to extend the treatment course.  However, I also lose some due to spilling, etc - it is not the neatest process.)

EBay: unsure if they are ever available there.  Part of the issue is that there are different Ionto/EMDA devices out there and I had no real idea why the particular one he was recommending should be used over another one, so I went with what he told me.  If interested - here's a link to the company that manufactures my device:

http://www.physion.com/peyronie_edu/whattreatment.html

That picture is almost exactly what I have.  The blue resevoir in the guy's hand is what is used to fill with verapamil.  If you click around on that site you will see that they are an Italian company, with an office or affiliate in New Jersey.  I would think one could contact them directly.  I don't know if you need a prescription for the device or not, however.  (Obviously for the medication you do).

Hope that helps.   :-\

SteveW

Last week I completed my 7th VI.  The first 3-4 seemed to help and the severe curve (almost 90 degrees) DID reduce by probably 20%.  The overall mass size (which originally covered just about the entire top side of my penis) was also reduced.  The last 3-4 treatments seem to have had zero impact.  No curvature, size or change of shape.  My mass is best described as a "plate" which is wider at the base, through the middle and tapering to a narrow section towards the head.

Now the Doc is seriously talking surgery.  Not nesbit's, but excising of the plaque.  I have commited to 6 more VI sessions before I make the decision.

I know. I know.  I just wanted to whine a bit.  Would it just be better to live with a bent penis and do the best I can or risk surgery, impotence and an implant?  I am able to have sex, but find it just about impossible to reach orgasm.  Anyone else find delayed or lack of orgasm a side effect of the fun we are having?  
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

bentley

Steve:
I am about at the same place. I got some result, but not enough. I am looking through everything I can find and have narrowed down to two doctors I am going to consult out here on the West coast. I know that nobody is going to do any tinkie shrinking on the bottom side ( Nesbitt). Post any info you find and I will do the same over in the Surgery section
Bentley

SteveW

Thanks bentley!
I got the "impression" from my Doc, that Nesbitt wasn't an option.  Maybe just in my case.  I've read about the procedure and I don't think so!
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

phil

Thanks for the very helpful info.  I am going to print the stuff out and share it with my HMO office.    I've found some Ion patches on a webside that have a battery built in.  Don't know if they would work on anything but an elbow.  Iontophoresis seems to be one of our better treatments if one can find a place to do it!!!  My regular Uro didn't know anything about Ion, only the specialist I was referred to when I asked for a second opinion.  D, please keep us informed on your progress. Ion may offer some of us real hope.  

steven

SteveW,

Did you experience the difficult orgasm after the injections? The injections could be the cause, I experienced some loss of sensitivity after injections 2 years back, but no loss of orgasm however, but loss of sensitivity on one side of penis, I was never sure if it was injections or Peyronies Disease...but it did occur right at the tie of injections, I told Doc,of course he said no connection between injections and loss of sensitivity, I stopped after that injection (my 3rd) whcih was very painful and ahd subsequent loss  of sensitivity (some loss) not all.

Steven

kbmw

Bentley and SteveW,
What you experienced is normal. I had the same experience. I am convinced that VI injections are Voodoo medicine yet it persists. Please don't think this harsh but you read about peoples failed experiences with VI but chose to do it anyway. Why, because a Doctor gave you reason to believe differently. I did the same thing. Now a Doctor is giving you another recommendation that requires a much more severe course of action. Please proceed with a great deal of caution. You cannot undo the danage done by surgical intervention.

One last thought. If any of you guys here are able to have a reasonable go at intercourse then leave it alone. Be glad for what you have. When you totally loose the ability to have sex because of a radical curve it is very depressing.

j

I agree with kbmw.  Based on what I've read over the last couple of years, I wouldn't go for verapamil injections.  And surgery is risky, regardless of what a surgeon tells you.  I'm going to hang on to the functionality I have, such as it is,  and wait for a better treatment option.

Others may reach different conclusions, which is to be expected given the poor state of understanding of this condition in the medical community.  I might be wrong, or you might be wrong, or my doctor might be wrong, or your doctor might be wrong.   Or all of the above.




SteveW

j,
Well that pretty much sums it up.  Nobody seems to know nuthin'.  
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

SteveW

My "difficulty" or lack of ability to orgasm I think, is directly related to my Peyronies Disease.  There has just been a complete loss of sensitivity.  Not trying to be too graphic, but guys, if I can't "get off" with my own fist, what hope is there?  
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

steven

steveW, Does Peyronies Disease cause lack of sensitivity? or do you think it was the injections that caused it?

Steven

august

QuoteAugust
Hi. I used topical verapamil from Peyronies Disease labs for 6 months religiously twice daily as recommended by Peyronies Disease labs. Were you recommended TV by a uro? Did you start off with 4 applications per day?? How long have you been using TV??

Before I developed Peyronies Disease, I developed ED from prostate cancer treatment (radiation).    The ED specialist that I was using just happened to be the guy who did the TV test work for PDL.

I started with 2 applications per day for 4 months and then went to 4 applications per day.   Wish that he had started me on the 4 because the cost of the TV is based on a per month cost instead of a per tube cost.

Measuring the bend is not an exact science.   It depends on the strength of the erection and lining up the camera properly.   Having two bends, they interfere with each other, so I might find improvement with one measurement and deterioration with the next.   Overall though, I am seeing an improvement.   Plotting it out, it looks like about 2 degrees per month with a lot of ups and downs along the way.   My wife is more sure of the improvement than I am.

Increasing the treatments from 2 to 4 per day has not changed the rate of change with time as far as I can see with my plot.    Perhaps, the improvement slows down as the treatment progresses.   Who knows?

j

The specialist you're referring to would be - Fitch?

steven

August, How/why would radiation for prostate cancer cause Peyronies Disease?

Steven

august

There is a higher than average number of men who have had prostate cancer treatment with Peyronies Disease.    Also men with diabetes.   In my opinion, this is because of the frequency of ED among these men.   Having sexual intercourse with a weak erection causes bending of the penis and scarring.

SteveW

Quote from: steven on December 29, 2005, 02:17:01 AM
steveW, Does Peyronies Disease cause lack of sensitivity? or do you think it was the injections that caused it?
Steven

I'm not sure.  Because I started VI's so soon after diagnosis, I can't separate the two as far as their individual or unrelated effects.  The loss of feeling seems to have progressed with the injections however.  Or is it just a result of the Peyronies Disease?  Every question or action or result, causes more unanswered questions.  
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

Steve

Quote from: august on December 30, 2005, 08:40:52 PM
There is a higher than average number of men who have had prostate cancer treatment with Peyronies Disease.    Also men with diabetes.  
august, I'm curious about your statement correlating diabetes with Peyronies Disease.  Do you know of any on-line papers that make this connection?  I was diagnosed with diabetes about 4 years ago, and Peyronies Disease almost a year, so I've got a lot of interest!
Topical Verapamil,
12 Verapamil shots (ouch!),
Now VED - Too many Weeks,
Still 70 Degrees :(

dcaptain

Steve, I know your question wasn't to me, but I recently saw a paper on a correlation between Peyronies Disease and diabetes and thought I'd share.  An abstract can be found online at:

http://tinyurl.com/cwa3a

Hope that's helpful.  

dcaptain


august

Quote from: Steve on January 02, 2006, 10:23:15 AM
Quote from: august on December 30, 2005, 08:40:52 PM
There is a higher than average number of men who have had prostate cancer treatment with Peyronies Disease.    Also men with diabetes.  
august, I'm curious about your statement correlating diabetes with Peyronies Disease.  Do you know of any on-line papers that make this connection?  I was diagnosed with diabetes about 4 years ago, and Peyronies Disease almost a year, so I've got a lot of interest!

My doctor has treated over 2000 men with Peyronies Disease.   I asked him if he thought that the incidence of men with Peyronies Disease is higher than reported.   And he said no, but that the incidence in San Antonio was higher because of the higher incidence of diabetes.    No report cited.

Larry H

August,

Several questions come to mind in reading your post. 1) What is the actual percentage reported that you were discussing? Does San Antonio have a higher than normal national average for diabetes? Since you are in San Antonio is Dr. Fitch your uro? I ask about Dr. Fitch because I have looked into Peyronies Disease uros for a family member that lives in the San Antonio area, and Dr. Fitch's name was the one mentioned most often.

Thanks,

Larry

august

Quote from: Larry H on January 17, 2006, 04:19:05 PM
August,

Several questions come to mind in reading your post. 1) What is the actual percentage reported that you were discussing? Does San Antonio have a higher than normal national average for diabetes? Since you are in San Antonio is Dr. Fitch your uro? I ask about Dr. Fitch because I have looked into Peyronies Disease uros for a family member that lives in the San Antonio area, and Dr. Fitch's name was the one mentioned most often.

Thanks,

Larry

It was just a quick conversation as I was leaving.   I think I threw out the number 1 percent, thinking that would be low.

Yes, Fitch is my doctor.     He was my ED doctor before Peyronies Disease.

Fitch indicated that diabetes was high in San Antonio.   He didn't say why.    Could be age related since San Antonio is something of a military retirement center.    Could be the rich diet.

Larry H

August,

Thanks for the info. It's strange about the % of diabetes in SA, but as you say it could be the age factor. San Antonio is a great place to retire.

I guess I would have to take issue with Dr. Fitch on the question of incidence, but with this disease who really knows. We all continue to search.

My Best,

Larry  

SteveW

Well, a slightly self centered change of recent subject matter here.  After 9 VI's, I have halted the injections with my Dr's agreement.  At the beginning, there was some improvement.  The huge plaque mass changed slightly, but the curve did improve by about 25%, from what was originally a 90 degree bend.  The last 5 injections did little, if anything.  Topical combined with injections was certainly not a "cure."  My doc laid out what few options I seem to have.  Surgery.  He is certainly not encouraging or even positive about the proceedure.  Basically, there seems to be a less than 33% chance of coming out of surgery not seriously affected or with an implant.  Odds are poor.  The Peyronies Disease patients he has referred to other specialists for surgery, or has performed himself, for the most part are unhappy with the outcome.  So, I guess I'm in the "learn to live with it" category at the present.  

Thanks for being there men.  Thanks for letting me vent.  And thanks for no "I told you so" comments.  hehe.

At the moment, I am doing nothing.  Surgery I feel, is not an option.

Whine, whine.  Poor pitiful me.
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

Old Man

SteveW:

Do not despair my friend. Just because the injections and the other things you have tried did not seemingly work, wait a while to see if you have a delayed reaction to them. I had a similar experience, but after waiting for several months, I did seem some good resullts. No total cure, just some regression of the symptoms.

I have always said that surgery in any form is the last resort. However, if after you have expended all other options, the penile implant does have merit. Have worked with some guys similar to your case and they did have implant surgery after exhausting all other treatments. All have reported great success with the higher medical quality implants. There are several on the market that are considered to be safe for use.

The only one guy I know of that had a bad experience went for the maleable rod type and he replaced it with the inflatable pump type with a tank in this abdomen for the fluid, etc. Won't specify the exact model as I am not sure of its name.

This is just my opinion based on observations of guys that I have worked with in my counseling work the US TOO cancer support group in my hometown.

It carries the same caveat that I am not a qualified medical technician or a medical doctor. Just a guy who has dealt with this mess for over 50 years.

Sincerely, Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

hopeful

Steve W

This is Hopeful.. have Peyronies Disease now for about 6-months... have been to several doctors including a urologist and (2) what I call Scam docs.. that do nothing but prescribe drugs for ED suffers....and take your money. However, I did learn about IONTOPHORESIS from one of them and about a companay www.physion.com that claims to be having good success with early Peyronies Disease patients.. no 100% cure but in some cases as much as 50%.. which for me with a 35% curve upward at the tip--- ( have not had sex in 6-months as it is almost impossible to penetrate.. plus I feel like a freak in front of my wife) married 37 years.. just killing me and her...

Whatever...no more pity.. I am curious what doctor you used for the Injections.. was it Levine in Chicago?? and did he advise you of the Physion company??? I called his office to try and speak to him.. and his assistant said the only way he will talk to me is with an appointment - just only 1600 miles away or with a telephone consultation for $165.00- Can you imagine the gall and the balls.. I told her before I consent to a tel. consultation that I will submit my own questionaire for the doc to fill out.. including questions such as .. what type of modalities does he prescribe, how many yearas has he specialized in Peyronies Disease, how many patienst has he treated., what is his success rate for his various modalities etc.. tighht now I am not under doctors care as I don't think any of them no jack sh_t about Peyronies Disease... I wil continue to search...

I am currently on Vit E and other enzymes.. and am exploring other options including a liquid enzyme that can be applied topically ( and am researching if it can be done via IONTOPHORESIS as well as with a needless syringe -no pain-no swelling etc..)  the company has had great success in treating lymphodema - not Peyronies Disease but same similar wound healing process where fibrin is sent to the injured area... Introduced them to Peyronies Disease (knew nothing about the disease) and they are preparing a special formula - working togther with me...to do a small clinical trial.. I am attempting to contact UR's that are open to alternative and can think out of the box.. that would be willing to conduct the trial.. will keep everyone posted

How long have you had Peyronies Disease??    and what other protocols have you tried??

Hopeful

Quote from: SteveW on January 26, 2006, 11:08:43 PM
Well, a slightly self centered change of recent subject matter here.  After 9 VI's, I have halted the injections with my Dr's agreement.  At the beginning, there was some improvement.  The huge plaque mass changed slightly, but the curve did improve by about 25%, from what was originally a 90 degree bend.  The last 5 injections did little, if anything.  Topical combined with injections was certainly not a "cure."  My doc laid out what few options I seem to have.  Surgery.  He is certainly not encouraging or even positive about the proceedure.  Basically, there seems to be a less than 33% chance of coming out of surgery not seriously affected or with an implant.  Odds are poor.  The Peyronies Disease patients he has referred to other specialists for surgery, or has performed himself, for the most part are unhappy with the outcome.  So, I guess I'm in the "learn to live with it" category at the present.  

Thanks for being there men.  Thanks for letting me vent.  And thanks for no "I told you so" comments.  hehe.

At the moment, I am doing nothing.  Surgery I feel, is not an option.

Whine, whine.  Poor pitiful me.

hopeful

Phil,

Have you started IONTO? yet... if so , what doctor prescribed it?  was it from Physion? I am looking into this.. as well as some other alternative treatments..

Hopeful...


Quote from: phil on December 14, 2005, 11:41:34 PM

I  have had Peyronies Disease for about a year and a half, and developed a curvature this past June. I just went to see a Peyronies Disease specialist who told me the best treatment method right now is iontophoresis using a steriodal cream and/or verapimil. The tough part is finding a place that does this treatment.  Usually it is a physical therapy facility.


phil

Hopeful,

No luck yet finding anyone that can or will do Ionto for Peyronies Disease.  Elbow, shoulder, etc yes, but not for the penis. I am still working things out with my HMO and trying to find a physical therapist that does this.  I may have to buy a machine myself. Right now I'm still using infrared heat and ALC, E, and aspirin.  

On another note,  I hear there is a urological convention in Atlanta in April and Peyronies Disease is one of the topics going to be discussed.  I hope some good news comes out of the meeting.

Phil

SteveW

My doc neither mentioned "ionto" or offered other treatments beyond the VI and topical I/we have been using the past 6 months or so.  At our last meeting, when treatment was mutually discontinued, the only option seemed to be surgery, which he almost vigorously discouraged.  He is meeting with several other doc's at a meeting/retreat/something mid Feb. and has promised to discuss my case with what he referred to as "heavy hitters."  

He has called in two other Dr's for consult/exam and all agree I have the most severe case of Peyronies Disease they have encountered.  After all the treatment (9 VI's & topical) there has only been slight improvement.  The existing plate still covers virtually the entire top side of my penis, shaped like an arrow head from base to head and has been best described as a "flat plate" of solid plaque.

My curve, which was at onset 90 degrees is now maybe reduced to 65 or 70 degrees, seems stable.

HOWEVER...over the last 4-5 days, each erection has become somewhat painful.  A pain centered in the mid section of my penis.  As or more painful than at onset.  Where to from here?  Call the doc?  Or just endure and fondly remember how my equipment used to perform?
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

Steve

Yeah, I asked my Uro about Ionto, and he just gave me a blank stare!  I did locate Dr Levine in Chicago (a bit far for me to commute from Texas), and I'd suggest anyone $eriou$ly considering Ionto to contact him ($$ because you're out-of-pocket for the equipment to the order of 1K or so).
Topical Verapamil,
12 Verapamil shots (ouch!),
Now VED - Too many Weeks,
Still 70 Degrees :(

learn4life



Hey folks,

Came across this eBay listing as I was looking through one of my customers
eBay shops ... its called

Eliminate Scars, Stretch Marks, Burns, Bruises, keloids
The best All Natural solution PROVEN for scars & wounds

Of course after seeing this I had to check it out....

Im wondering if any of you guys have heard of anything similar before ?
Do you think this product would help with Peyronies Disease ? If so why ?

Also would it be dangerous to apply on the penis ?

Heres the link :

http://cgi.ebay.co.uk/ws/eBayISAPI.dll?ViewItem&category=29618&item=5651407338

Ive sent an email asking for the full list of ingriedients to check up.


Cheers !



learn4life



Ok recieved the reply on the ingriedient list :

No More Scars contains:

helichrysum angustifolium, Anacardium Occidentale, aloe vera, Corylus avellana, Alpha tocopherol, Rosa rubiginosa, phylloquinone, Salvia officinalis... and our secret ingredient!

Anyone know much about these ingriedients ?

Anyways off to research up on each of the above,

Cheers !


hopeful

Phil,

I spoke to Physion- they wil sel lthe unit and instruct you how to use yourself- I havenot ordered it yet... please read my post below that I sent to susan- also, give tis info to your doctor so he can give it to his HEAVY HITTERS- mas it is time for them to think outside the box- I am available anytime to discuss a possible trial etc...with doctors who will monitor it- how bad is yours-

Susan,

How is the VEd helping your husband... is he able to maintain an erection? what about the Peyronies Disease?, where is his curve?- how long has he had it?....What about the Verapimil injections- who did these- and what was the outcome?- DId he consider IONTOPHORESIS?- www.physion.com  ?- I was considering- but have not seen enough evidence- if itwas really working it would be ALl over the forum. I have not purchased a VED yet..

I have had Peyronies Disease for abut 8 months- no more pain- have low testosterone - 300 - have 35% curve at tip  of penis- I think it is getting worse..I am only taking oral enzymes for now - . I am working with (3) other companies doing research- one is a company that does high frequency ultra sound- which they are curing prostrate cancer- 100%- and laproscopy- ablation- to remove tumors- see link http://www.misonix.com/medical/US/dApplications -

After speaking to them about Peyronies Disease, they feel that their ablation method may be a modality to try- and they are in the process as we speak- to get approval in London to test this on a cadaver with Peyronies Disease-  basically they are able to dissolve cancerous tumors, and suck them out-very similar to liposuction...

I am also working with another company- that has invented a needles syringe- no pain- no bruising-no bleeding - that has just finished a 2,000 patient trial on men with ED and diabetic that cannot take oral Viagra, Cealsis etc- with fantastic results- I am also working with another company that has created a super strong Enzyme creme- that has had fantastic results with DP & lymphodema - both similar to Peyronies Disease - same basic conditions in different parts of the body- I just got the creme- 2 days ago- and started applying it- I will also begin an oral enzyme protocol as well- I want to find a doctor to work with that can monitor the treatment ( before and after) I will be sending sample to the company with the needless syringe to see if this can be administered this way as well- I am also trying to see if it can be administered via IONTOPHORESIS too.

Still trying- still Hopeful- very hard on my wife- no sex- for almost 8 months-very difficult to penetrate- very embarrassing-afraid to try- am 58

hopeful

Plus a little in it for the money- wanted $165 just to talk on the phone- I think from now on- I wil prepare a written questionaire and send to these doctors to fil out and return beforer making an appointment- I have spent so far over $1500 - just in one visit- for tests only- plus he wanted another- $1500 plus for  IONTO and SOMA....


phil

Hopeful,

Thanks for the info.  I am very close to getting my HMO to approve ionto treatment.  

Phil