Hour glassing and bottle necking

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shadowmonger

I don't have any bends. Only hourglassing and bottle necking. Will traction improve  that as well?
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TonySa

PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

betterbend

Is VED generally considered better for hourglass? I have used traction since Jan, and just stopped, I want to give it a rest until i start up Xiaflex again in the fall.  Have not seen much progress with the hourglass issue.  was thinking of going to VED for that, but dont even know if that is a smart idea
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

charlie74

betterbend,

when you say do xiaflex again, what was your experience with previous treatments? how many times and was there any improvement? you say you don't have curvature, just bottlenecking, has it always been this way or did you once have curvature?

I'm set up to see Dr. Goldstein in san diego, expensive visit, I won't know if I'm covered by insurance until afterwards, trying to weigh my options if i'm not covered and curious if its beneficial to get xiaflex in the first place. Trying to figure out if interferon or verapamil are contenders for top treatment.

TonySa

Charlie, has insurance at least approved paying for the consultation visit?
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

shadowmonger

I would also like to know if ved or traction is better. Cus I don't have any bends or curves. Just dents/hourglass/bottlenecking
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betterbend

I did two rounds of Xiaflex (4 inj.).  My upward curve got slightly worse from 30 to 38%, but my left curve of 10% is gone.  I think that is more related to the first measurements because I just couldnt get fully hard for my sono and measurement, I think I was too nervous.  I was much calmer the second time around and had no problems.  However my doctor doesnt think Xiaflex was all that effective.   He would do four more if I want, but thought the chance of improvement were not great if the first four did nothing.

I had the hourglass and curve  from the start.  The hourglass is more bothersome for me as it is an area that might buckle.  I would love to figure our how to get rid of that ...
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

WhatNext81

Does your doctor think the injections help with deformities?
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charlie74

Quote from: Tsanchez12369 on June 29, 2018, 05:14:51 PM
Charlie, has insurance at least approved paying for the consultation visit?

No, "out of network." It seems that any Uro that is dedicated to helping us out is out of network, I've gone down the list in SoCal. its gonna cost me $1500 for my visit which sucks but I can't sit idle. The note above where xiaflex didn't help has me concerned.

Interferon, xiaflex or verapamil? who's had success with any of these?

charlie74

Also, my situation seems to evolve daily, I developed a dent on the right side above bottle necking, I've read that VED is good for dents? maybe VED is best for bottlenecking situation? Wondering if I should try VED before going and dropping all this dough on treatment that might not work

TonySa

Xiaflex has shown the most improvement and thus the only FDA approved treatment.  Dr Levine in Chicago is well thought of and prefers injecting verapramil as much less expensive.  I'd consider him if thinking of verapramil.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

WhatNext81

Charlie-Have you called your insurance provider to discuss why you're not covered? Typically, any good dr should be able to get you approved, as long as you meet xiaflex's requirements. If you call your insurance, ask for the prescription coverage dept as xiaflex falls under that category.

If that doesn't work, google xiaflex and call the manufacturer directly. Inform them that insurance isn't covering it. They should be able to provide you with a sizeable discount. Then talk to your dr and see if his hospital/practice can offer any additional discounts.

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TonySa

I agree, chances are good there is coverage. If they do not have an in network doc specializing in peyronies-they should authorize you to see an out of network doc.  That's what I'm doing.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

WhatNext81

To the original poster-I would likely suspect that traction and generic viagra/cialis is better for deformaties such as yours. Reason being, more time under tension daily,  depending on the device. Some traction devices require less time, but use more force. Either way, you're going to stretch it out better and more consistent with traction vs VED. Just my opinion.
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Monty

Hi, just a note, i use a VED unit, i don't have any hour glassing or dents etc, but i do get a good amount of girth expansion when using it, so a VED could help you.
71 UK, ED from 2011, unable to get full erection, Peyronies Disease from  2015 acute bend to left, VED & hand traction + 20mg of Tadalafil twice a week, or when i'm feeling lucky, forum member November 2017. Fav Film&Song, TheGoodTheBadThe Ugly. A Day in the Life

charlie74

Just spoke with the 2 urologists that do xiaflex in socal, both said, they do not accept ANY insurance, IF, insurance does cover the treatment/consultation, we pay out of pocket and MAYBE the insurance will reimburse. but the lady I spoke with said, in her experience, on average, its only 25% reimbursement if at all.

this is terrible news for me, i'm not rich and have all my money involved in my new business. frustrated at another dead end. any advice?  :-\

how are you guys getting your xiaflex?  

WhatNext81

Call the manufacter's direct 800 number. They can help if your insurance doesn't cover it. They can also tell you what drs are authorized in your location. Their website even has info on this. Also, why did your drs say they don't cover it?

Also, call your insurance. Ask to speak with(or dial the prescription phone number on
Your insurance card) the Rx dept. Don't give up.  
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TonySa

I wouldn't trust a doc that does not accept any insurance, IMHO they only want to be able to charge exhirbitantbrayes.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.