Have a Doctor appointment

[Rickmud]

I'm not sure where to post this. I have had a bent tool for about 13 months. For some background my tool has always been like a divining rod in my sleep. I can't tell you how many times I woke up with it poking my wife in my sleep. When with my first wife I woke up one morning with blood all over my pillow. I figure my divining rod had tryed to drill for oil in the middle of the night and she cold cocked me in the nose while I was asleep. Thirteen months ago I woke up with a hard on and no feeling in the head. Upon waking up I realized that my current wifes hip was laying on the head of my divining rod while erect. The head had gone entirely to sleep as does one's arm when sleeping on it for hours. The head when pulled out from under her hip was signaling for a left turn. Since then it has progressed down the shaft to where it is now bent about 1/3rd down the shaft. Last night I woke up three times with an erection and each time I felt my tool and it was pointing at a 90 degree angle. Which caused the erection to immediately deflate. I have an appointment with a Doctor in Oklahoma City Feb 24th who is a member of PDS. I'm hoping he can do something for me. If not. I guess I'm just getting old at 58. I was reluctant to see a doctor untill I found this place. I found the doctor I am going to see thanks to your efforts.  Wish me luck.

[LWillisjr]

Rickmud,
Sorry to hear of the injury. Here is wishing you luck that it is something that this doctor can treat. When you say you have a 90 degree bend.....  that would mean that your erection would begin pointing straight out, and then about 1/3 the way down makes an abrupt turn so that they head of your erectoin is pointing left? Just making sure we are interpetting the 90 degree bend correctly.

Keep us posted on progress.

[Rickmud]

It starts out straight and turns left and up 2/3Rd's of the way to the head. This morning wasn't quite a 90 more like 70.

[Tim468]

Rick,

I'd strongly consider the VED - a sharp bend like that is often quite amenable to the VED helping it straighten out a bit.

Tim

[Rickmud]

The Urologist recommended Verapamil injections twice a week for six months. Saying that he would suspend the treatment if there was no improvement after three injections. He believes Verapamil Injections have a 50-60% improvement rate. He stated that a 70% bend would reduce to 20% if it worked. Penetration would still be difficult but better. He is of the opinion that oral medications don't show to work. He said he believed the bend was as bad as it was going to get. He said I would never get the feeling back the way it was pre Peyronies Disease. Nor would it ever be straight without surgery and he didn't recommend surgery. He felt in my particular case Verapamil injections was the way to go.

To sum it up he only has confidence in Verapamil injections, the patch surgery, the patch and restrict the opposite side to straighten, and the penile implant. He thought my best option was the Verapamil injections. He wasn't high on surgery. He said he does it if the patients want it but he said "We literally take the penis apart and reassemble it." He was of the opinion that the only improvement I would see with any of the above options would be that ease of penetration would be improved and that would be all the benefit I'd see. He said those were the only options that would be beneficial and ruled out all other options.

Not sure if I want to invest in the cost of the VED devices. Let alone have to pump it up a few times a day. Having to lube it up and clean the tube. Man, what a pain. I never was into a stick shift. I'm into automatics. From what I've gathered in the posts on the website, the needed VED device is a few hundred dollars as are the stretching devices. I'm trying to picture how I would find the time to pump up a couple of times a day. I'm not thrilled with the prospect. I've lost 2/3rds of my hearing. My eyesight is gone without bifocals. My wife isn't very sexual. With the loss of size she is even less sexual. But always willing to accommodate my needs. God Bless her. He also said my penis was just fine 94% of the time. But just not as fine for the other 6% of time.

My government is looking to collect more money from me in taxes and insurance premiums and out of my pocket cash for healthcare and giving me less service in return. I would have tried the VED device had he thought it would work and recommended the treatment. But since he doesn't. The insurance I currently pay for, won't cover it.

If this healthcare bill takes effect. I doubt it will cover someone my age anyway. I still have one son at home. I can afford the VED device and the mechanical stretching device. But there are other things in the family budget that need funding.

I told the Urologist. I'd have to think about it awhile. I'm not sure what to do about my Peyronies Disease at this point in my life. I do miss the old tool.

[Old Man]

Rickmud:

My advice to you at this time is:  Run! don't walk to another urologist as this one definitely seems biased in his diagnosis. A second opinion would be the best thing for you now even though you would have pay for it yourself. Peyronies Disease is something that needs the very best care and attention. There are plenty of guys on this forum that have tried various "treatments" without success, so read all the different approaches that have been tried before embarking on a plan for yourself. Over the past 56 years plus, I have seen many things tried and failed. So, do your homework before embarking on a final decision as to what you do with your Peyronies Disease.

You are in no different position than many others here. We were all in a state of "fear" when realizing that something is happening to our most prized possession. Research on the verapamil board/topics will show that there has been little improvement from these injections. Quite a number, myself included, has had very bad results from the injections. We have suffered more plaque, nodules that don't go away, and much pain from bad injection sites. So, you should be careful in what you decide about them.

The VED does not have to be used two times a day. It does not take all that much time to use it according to the 26 week protocol. Clean up work for the device is not all that time consuming either. Soap and water does a very reliable job with only a few minutes to do the work. Using a water soluble lubricant is the only lube one should use so that cleanup work is easily done. I strongly suggest that you read the VED board topics/thread to learn more about the device and how it used. It has worked successfully for many of us on the forum. The least advantage reaped from its use is that one gets a much more healthy penis, etc.

Sorry that you are the family of Peyronies Disease sufferers now, but you can do something positive toward relief. You just have to have patience and remain more calm than you appear from your posts. Just ask if you need any further help from any of us here we are all in it together.

Old Man

[Rickmud]

Thanks for the advice Old Man. I'll keep all that in mind. I didn't intend to come off as not calm. My post was as calm as I get  . I was just relaying my experience and my take on it. I live in Oklahoma. I figure that was my best shot at a urologist I had without upping the anti in costs quite extensively. I drove 90 miles to see him and 90 miles home. He is a member of PDS and the only member I found in the state on the list. I had high hopes ever since I made the appointment and was disappointed to hear that it would never be the same but didn't look at it as the end of the world. Just somthing I'd have to deal with like fading eyesight and hearing.

I figure it goes downhill from there for urologists in driving distance around these parts. I'd already decided not to do the injections. Most doctors tend to follow the standard medical protocalls regardless of their specialty as it is the safest thing to do in their opinions and the least risky for lawsuits.

The standard protocals don't have a good track record with Peyronnies in my opinion based on the bit of information I have taken in. I'll probably evolve to the VED but I'm not ready to spend that much money on a hand pump and three cylinders quite yet. I am continuing to read and study in my spare time. I probably should have saved my 20 buck co pay and gas and struck out on my own based on the information here and advice from you guys. That was my first instinct. I gave the doc a shot at it but balked on the shots or any of his treatments based on what he said about it not getting better just a little straighter. I have thought about purchasing one of the 74 dollar tubes and pumps and seeing if there is any change and maybe upgrading from there if I feel confident in it. I just don't have enough confidence in it at this time to invest hundreds. Then again I worry about the quality of the equipment.

[Old Man]

Rickmud:

OK, so you live in OK. You should get in touch with Angus who also lives in OK. He has been thorough many trials and errors with his bout of Peyronies Disease. He can give you much insight about uros in OK and the whys and wherefores of who might be the best one for you to use should you elect to see another one.

I would strongly recommend that you do not waste your money on the cheaper one cylinder model VEDs. The medical quality one cylinder models have worked great for some of us, (it worked great for my Peyronies Disease case after prostate surgery), but the three cylinder medical quality VEDs have a greater ability to help with Peyronies Disease symptoms. There are not many three cylinder models of this quality on the market though. You can make your own unit like Dr. Tim, Angus and Mick. Their experience with this is posted in the VED board so you might want to consider building your own if you are handy with tools and have a bit of expertise in handy man items.

There is a link to the recommended VED posted in the VED board section. Strongly urge you to read all you can in this board before embarking on any treatment/therapy for your situation. There is a world of information on all the boards on the main forum, so take advantage of all our experience in making your next move.

Good luck to you and if there is ever anything we can do to help, feel free to ask any and all questions you might have.

Old Man

[cowboyfood]

Rickmud:
There is a world of information on all the boards on the main forum, so take advantage of all our experience in making your next move.

Good luck to you and if there is ever anything we can do to help, feel free to ask any and all questions you might have.

Old Man

I concur w/ Old Man.  Get started on the VED now, ask questions as you progress with the treatment and allow your decision to be whether or not you continue to use the VED as opposed to whether or not you will begin to use the VED.  

Also, find a urologist that will prescribe Pentox (I believe many more are doing so now as opposed to even a year ago); get a prescription for Viagra, Cialis, or Levitra; consider the supplements L-Arginine, ALC, and Vitamin D3.

All of the above work to halt and reverse the damage by increasing blood flow and prohibiting processes thought to encourage scarring.

Plus, all have the added (and sometimes intended) benefit of promoting the overall health of your penis and reducing/eliminating current or future erectile dysfunction issues.

per your VED cost concern, I believe in the intermediate and long term it is by far the most cost effective form of treatment.  It's a one time investment of a less than three-hundred dollars plus a few bucks per month for lubrication.  This works out to be less than a dollar per day during your first year, and becoming considerably less than that amount as time goes on.



CF

[Rickmud]

Well guys thanks for hanging with me. I'll give the VED a shot. Not sure where to go now for a Uro for scripts. Dallas is two hours from here. OKC about an hour and a half. I think Ada has a uro. Ada is about 17 miles from my place. But not a large town at all.  I think I'll just phone the Ada uro make an appointment and just ask for the scripts when I see him. I tried the vitamin E for awhile but it messed with my digestive system too much and didn't seem to be effective.

CF when you say consider the supplements L-Arginine, ALC, and Vitamin D3. Do you mean in addition to the prescriptions? And to take all three supplements? What dosage? Not sure what ALC is. Is that what its called on the bottle?

I asked the uro about Pentox as I had seen it highly recommended here and told him so. He first said he hadn't heard of it. Then later said that was just the generic name for the drug Pab something and said offhand he didn't remember the exact generic name for the Pab whatever. I forget the rest of the word. He said he didn't believe in using the drug. It wasn't effective.

Also he said the plaque was 16 centimeters and not big at all. Which I guess is why he thought the injections would be the way to go.

[Old Man]

Rickmud:

The doc that told you pentox was the generic for potaba or paba is totally wrong. Pentox and Trental are the brand name and generic for the pentox drug. Pentoxyfiline is the whole name for Pentox.

So, if you use him/her again, ask what he/she knows about those drugs. He probably does not know the difference himself.

Potaba/paba does very little, if anything, for Peyronies Disease symptoms. I took about 13,000 potaba tablets at 24 tablets per day = 4 6 time a day. There absolutely no positive results. Some guys on the forum have taken potaba and paba so they may can give you a take of their results.

Old Man  

[George999]

Acetyl L Carnitine was by far the most helpful supplement for me in dealing with Peyronie's and I have tried close to 100 different supplements.  ALC beat them all handily.  But even ALC is no match for Pentoxifylline.  My biggest regret is that I wasn't aggressive enough in getting Pentoxifylline sooner.  Lots of uros push Potaba which is next to worthless in comparison to Pentoxifylline.  My uro would only prescribe Potaba.  When I would only accept Pentoxifylline, he referred me to Dr Lue in San Francisco who was kind enough to prescribe it for me.  It worked very well.  Now I am around a month off of it without any backlash or recurrence of inflammation.  Aside from VED and traction, I think that ALC and Pentoxifylline are the only other real options.  Making sure vitamin D levels are high (50-70ng/ml) is also important I believe, but Pentoxifylline is the only real prescription treatment option.  IV is also pushed by a lot of Peyronie's docs, but has mixed reviews and some degree of risk.  - George

[cowboyfood]

CF when you say consider the supplements L-Arginine, ALC, and Vitamin D3. Do you mean in addition to the prescriptions? And to take all three supplements? What dosage? Not sure what ALC is. Is that what its called on the bottle?

Yes.  George999 is one of our board's pioneers that has taken a lot of "arrows" on the supplement front.  I began using ALC and D3 because of his recommendation.  

Try using the board's "advanced search" function and enter key words such as "ALC" and one of the following board members names: George999, Old Man, Tim468, Angus, jackp, newguy, hawk, and others.  I consider these guys "professionals" in the truest sense of the word, better than most uros when it comes to Peyrones.  My uro endorsed their recommendations; he takes peyronies seriously, and with an open mind.  This will filter you to, IMO, some very relevant posts.  The advance search menu can be accessed by clicking on the "magnifying glass" icon above and to the left of the general search box...look to the top/right of your screen.

Dosages vary, I use 2g of ALC daily, 2K of D3 daily, 3g of L-Arginine daily, but I think others take more or less.

google puritanspride for a good online source and great prices; iherb is another and I believe there are a couple of more reputable ones.  The price savings are significant compared to what I've seen at Vitamin Shoppe and GNC, although they have good stuff too.

CF