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Author Topic: Xiaflex anxiety  (Read 405 times)

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Shafted

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Xiaflex anxiety
« on: February 18, 2020, 05:49:21 PM »

I'm 30 years old with a 40 degree curve up and 30 degrees left.  I've been using the RestoreX device since September 2019 (discovered first plaque August 2019).  Also, I've switched to Keto and intermittent fasting since there has been some discussion around this being a metabolic disease.  My insurance covers 100% of the Xiaflex shots and I am scheduled for my first injections next week.  I have a lot of anxiety because I'm afraid these injections are going to make things worse.  i.e. corporal rupture, erectile disfunction, etc.

I have the rest of my life ahead of me and don't want to make a decision I'll regret for the next 50 years.

While I know it's my decision, any words of wisdom are much appreciated.
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samsung

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Re: Xiaflex anxiety
« Reply #1 on: February 18, 2020, 09:15:43 PM »

PM me and if you want we can talk on phone. I'll tell you anything you want to know about xiaflex. Going to NY tomorrow for my 4th round.
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45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

TonySa

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Re: Xiaflex anxiety
« Reply #2 on: February 19, 2020, 10:54:53 AM »

One important factor is how experienced your doc is w doing this procedure.  If not done properly at best it’s not effective and at worst it can damage.  With two severe curves it sounds like it may be a good benefit, be sure to add traction each round two weeks after second shot.
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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.

TDix

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Re: Xiaflex anxiety
« Reply #3 on: February 19, 2020, 03:16:46 PM »

Anxiety is a natural reaction.  Like Tony says, make absolutely sure that the dr doing the shots is VERY experienced with it.  Don’t want to scare you with my experience, but I am here to offer any advice
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46 yrs old, 3 yrs diagnosed, 3 shots of Xiaflex resulting in hematomas/burst dorsal vein or fracture at tip, excision/grafting surgery March 26th successfully performed by Dr Faysal Yafi, pelvic floor therapy with Laureen McVickers

Shafted

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Re: Xiaflex anxiety
« Reply #4 on: February 25, 2020, 07:57:56 PM »

Follow up —  Had my first shot today and it actually was not as bad as I thought.  My doctor gave me a needle to numb the area which hurt like a m***** f*****!  Then he put some gauze on the area and told me to massage it for five minutes.  He came back and gave me the xiaflex and I didn’t feel a thing.

I’ve had my penis wrapped for 12 hours and there is a lot of swelling and noticeable blood under the skin at the site of the numbing agent injection.
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samsung

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Re: Xiaflex anxiety
« Reply #5 on: February 25, 2020, 08:59:49 PM »

Did he do it by ultrasound or by feel? Some do that numbing shot and some don't. I didn't have him do it because I have heard it is just as painful as the shot itself.

Glad it went well. Fingers crossed for you.
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45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

Shafted

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Re: Xiaflex anxiety
« Reply #6 on: February 26, 2020, 09:28:31 PM »

He did not use the ultrasound. He palpated and got a sense for where the injections should be.  I think the numbing shot was the best way to go for me because my doctor wanted to inject the Xiaflex in several different spots.  His logic was that these plaques are quite dense and not porous so the medicine does not travel well.  I don’t know if this will actually make a difference or not but I’m hopeful for a positive outcome.

The way you described the Xiaflex injection, the numbing shot might be less painful.  The thing about the numbing shot is it hurts for a second and then the drugs start working.  I’ve had a needle above my front teeth before and that was worse (not by much).
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TonySa

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Re: Xiaflex anxiety
« Reply #7 on: February 26, 2020, 10:29:13 PM »

Will u follow up w traction in two weeks as better combined outcomes.
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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.

Klo34

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Re: Xiaflex anxiety
« Reply #8 on: May 26, 2020, 09:42:37 PM »

How are the shots working out Shafted?
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Shafted

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Re: Xiaflex anxiety
« Reply #9 on: May 30, 2020, 09:43:50 PM »

I have had some improvement from the shots coupled with traction.  The first round and the first shot of the second round were fine, but I had severe side effects from the second shot of the second round.  Specifically, my penis/testicles swelled to be larger than a softball.  I also had violent pain shoot through my penis intermittently which was by far the most pain I’ve ever felt in my entire life (100x more painful than the shot).  I have round 3 coming up next week and am still not fully recovered from the severe side effects of the second round.  I still have discoloration and a lump about half the size of a grape under my skin.  The lump was where the worst of the swelling and bruising was so I imagine it’s some kind of hematoma and will take a long time (months) to heal.

For round 3, I plan to change my recovery strategy and hopefully mitigate side effects.  After the shot, I plan on elevating my legs and applying ice immediately.  I’ve been keeping my penis wrapped for 48 hours after each shot which worked great for the first 3 but may have been to my detriment for the fourth shot.  I will more closely monitor the swelling and take the wrap off if the base of my penis has severe swelling like last time.. this is where I developed the lump/hematoma.  I think there was so much fluid with nowhere to go the hematoma developed, maybe if I took the wrap off the fluid would have disseminated and perhaps prevented that from happening.

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