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[Hawk]

With our Society's new website, we have a tremendous opportunity to gather real information and put it to work for our members, the Peyronies Disease community , and Urologists.  While not scientific, research quality, these surveys go a long way toward filling in the information gaps we have always dealt with.

Below is a link to a survey on our website.  It took Steve time to develop the questions because his urologist was interested in whether our forum could provide the answer.  It took me several hours to code the page to properly route the data.  If you have had VI, it will take you about 60 seconds to complete the survey. 

I am posting the link in this member only area because I first want a very accurate member survey before opening it to the public.  Consider discussing http://www.peyroniessociety.org with your Uro and invite them on to lurk or post.  Ask them if they want to be uPeyronies Diseaseated on any new survey results and if they would like to construct a survey that we can run for them.  This service is at their disposal.

Click here to go to the -----> survey

Click on our attached member results below.

[ComeBacKid]

Hawk,

Is there anyway you can create a nice looking visual bar graph from the VI results, than we can make a section of all of the polls we do and have bar graph charts and organize a part of the forum just for our polls so people can view these, and possibly make it so new people can take the polls as they join or discover them.

ComeBackid

[Hawk]

ComeBackid,

As usual, your suggestions are appreciated and usually cover things that would be good improvements.  I am working on a section for the website that would display survey results in a simple table form.  I have considered showing line or bar graphs but have not had the time to look into the simplest way to build a graph.  Any suggestions on that subject would be appreciated.

I am currently running as a one man operation and am very strapped with PDS and personal projects.

I know of no way to set up a "real-time" graph that would update automatically as someone took a multiquestion survey.  For that realson, I like to run a survey, close a survey, analyze the data and post it.  They can be run again a year or two later.

[ComeBacKid]

Hawk,

I could help you to try and create the new survey for the Verapamil, and I have a program I just bought that you can design business cards on, I could design a peyronies disease society card that we could allow members to print out to take to their urologists who could hand them out to sufferers, this might get the word out to more people about our forum.  I think some of the older people that are your age aren't quick as tech savvy as you are 

I think your doing an excellent job and quite possibly in the future we may need another person on the forum with as much computer knowledge as you do to help you out, I hope this is the case cause it means our forum is growing huge.  I see a lot of potential for this forum to really grow in many ways.  I will continue to brain storm and carefully think through some of my ideas.

ComeBackid

[Hawk]

ComeBackid,

I so appreciate the offer for help.

I have a business card that is in draft form as well as a letter to take to urologists. They are both in MS Word format.

I will attach them to a post later today.  The card file is a bit too large to attach but I may workout another option.

[ComeBacKid]

Hawk,

Looks good only thing you might want to add is something getting this idea across:

Exploring traditional and alternative treatments for peyronies

We should get a finalized card and get it up somewhere where everyone on the forum can see it and print it, can you set up a way to print out a bunch of them to be cut out or how will the members get the actual cards.

Once it is finalized I'll get like 25 and mail them to my urologist  with a letter, I'm sure he wont mind giving them out. 

I think this is a good idea to network out there and get more members, we alwasy want to keep growing at a good clip. 

Good work hawk.

ComeBackid

[Ray]

I had six verapamil injections and they hac no affect.

Ray

[lefty]

I have had 3 injection sessions and have seen no results. I am now in the 7th month of using it topically and have seen no improvement. I have had Peyronies Disease for 6 years and am a new member.

[Shortie]

1-4-09
I had 5-6 sittings of multiple Varapamill injections at a time, they did nothing to stop the progress of my disease.
Shortie

[vhguy]

Diagnosed early 2009 after several months of pain.  Had "S" shaped erection.

13 injections - every two weeks - doctor varied injection site depending on where plaque was noted.  Doctor used needle to attempt to break up/loosen plaque at injection site.  Supplemented with oral dose of daily Vitamin E.

After 3rd injection - pain was 100% decreased.

After 13th injection - erection is 90% straightened out and continuing to improve.

When I exercised, improvement seems to be more noticeable.  

[Italiano]

Hi, i am a 42 years old guy,i live in the south of Italy and i faced and still face a lot of health problems:diabet I(i was 9),a cancer,the same of Armstrong the sportman(1993;but now i am ok),and finally the induratio penis plastica and duyputren.
It was very important to me finding this precious forum.I was visited by 10(it is true!)urologistists and i decided to have a personal approch to my/our sick.
First a little summary: 10 doctors told me 10 different things about how to cure peyronie but one:evribody suggested to take vit E (and this could be useful, in my case,because of diabet).2 urologists said me to use verapamil injections(and one of them to use a penis stretcher according a protocol very similar to that of doctor Levine);other 2 said me to never pick my penis with injections explaing that is very dangerous for a diabetic person.A napolitan university doctor told me that the only way was eswt + POTABA;a doctor said me to use verapamil but only with iontoforesis and preparing the part with a infrared lamp;at Pisa hospital doctors said to use arginine(dromos and nicetile)+ infrared lamp + iontoforesis;another suggested ultrasound+laser;some of them said to use cialis 2/3 times a week.
 In my experience i had a problem after an injection made for better diagnosing the state of peyronie so i preferred to use elettroforesis.I used verapamil for about six months no less than 4 time each week.I am not so sure about the effectiveness of verapamil in this way.No improvements for curvature but the plagues became softer and may be that had a role in stopping the progress of my sick.It is true that especially at begginings it is not heasy to use the elettroionoforesis device.
I tasted 4 times the eswt with some result: the plague was partially broken but i could not keep on with eswt because it is difficult for me to reach Napoli.
 Actually,I don't assume any drug but some vit E and i have some good result with handle stretchings made several-several time a day after warmup with not too hot water/infrared lamp and i also used ved but with  a not tecnical pump(the one with hidro system sold by ultramax;i gave up after about 9weeks;italian urologists are very sceptical about ved;in my opinion is quite good and now i hope to conitnue with the 3 cylinders as Old Man suggests;I also bought a eupoean famous penis strecther but it is impossible to ware it for i work out).
I am thinking to come back to elettroionoforesis useing verapamil+DMSO:I suppose that with dmso it would be possible to improve the transdermical penetration of verapamile.
I think that injecstions could be dangerous.I am not a doctor and this is only my opinion but a opinion based on experience:I will never let my penis be picked again.
Please excuse me for the bad quality of my english and for my"random"speaking.
I hope the best for us all.
Italiano

[dioporcolorisolvo]

In my experience verapamil infiltrasions improve the quality of erection, but they haven't stopped the progression of disease.
I'd like to test the hypertermia.

[pvpey]

I'm confused. The survey asks if members have had either injections or topical Verapamil treatment, not just the injections as it would seem was the purpose. I took it, but have only experience with topical treatment thus far.

[mohsinj]

  This post is so Great and Nice 

In my experience i had a problem after an injection made for better diagnosing the state of peyronie so i preferred to use elettroforesis.I used verapamil for about six months no less than 4 time each week.I am not so sure about the effectiveness of verapamil in this way.No improvements for curvature but the plagues became softer and may be that had a role in stopping the progress of my sick.It is true that especially at begginings it is not heasy to use the elettroionoforesis device.

[npm43]

I have about a 45 degree angle curve. Had 6 treatments of Verapamil injections over a span of 12 weeks. Doctor did the whole in and out make swiss cheese thing. The injections had no effect on curvature. During this time, my pain subsided, but that could have just been the natural course of the disease not the injections. Since I stopped injections, I have developed new plaques and now have a hour glass ring in another part of the penis that seems to be getting worse. Looking for new treatment options.

[james1947]

npm43

Thanks for adding your Verapamil experience.
Please read first:
Peyronies Survival Guide - Information for New Members - Peyronies Society Forums
And all the other treatments topics that many of us tried and helped for some.
Please give us some more information regarding your Peyronies.

James

[hope4all]

npm43 - Thanks for sharing. The EXACT same thing happened to me.  I mean absolutely everything you wrote from the 6 treatments to developing more plaque and hour glassing.  I have some dr. appts coming up and will update progress as it transpires.  Good luck. These boards have been my savior. 

[Mending the Bend]

Same thing here. I was stable for 9 months with curvature to the left, full rigidity and no hour glassing. After my 4th Verapamil injection it started to get worse. By the 6th injection I had bi-planar curvature, hour glassing and hinging. So much for "doing no harm".

[james1947]

I am wandering why doctors still injecting Verapamil.
Wandering also why people agree to get those injections.

James

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