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Author Topic: Starting treatment next week  (Read 2677 times)

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Travdixon

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Re: Starting treatment next week
« Reply #50 on: September 28, 2018, 03:11:00 PM »

The Dr my Dr is consulting with is Dr Gelman I believe
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Travdixon

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Re: Starting treatment next week
« Reply #51 on: September 29, 2018, 02:47:36 PM »

Drained hematoma spots still very sensitive and bleeding.  Hydrogen peroxide, neosporin and wraps right now.  Switched to non stick gauze as they kept sticking.  Swelling looking better but still very sore and painful.  Thank god for pain meds right now
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Travdixon

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Re: Starting treatment next week
« Reply #52 on: September 29, 2018, 07:29:46 PM »

Aahh to have my old original penis back.  Such is life I guess.  Happy I have a long term, understanding wife.  If I was single I would be a major wreck.  Still messed up, but knowing she loves me for me makes a huge difference
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pfract

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Re: Starting treatment next week
« Reply #53 on: September 30, 2018, 06:44:07 PM »

It does indeed. If anything, you have the implant to sort out your problems if this doesn't work out!
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Penile fracture during sex, Portugal, August 2014 (no surgical repair, left with moderate ed) / ultrasound, full assessment with Dr Irwin Goldstein, San Diego, California March 2016 / Saving for implant; Dr Kramer, Dr Eid? 2020?

Travdixon

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Re: Starting treatment next week
« Reply #54 on: October 02, 2018, 12:56:45 PM »

Quick update....so swelling is still present but seems to slowly decrease daily.  Still dealing with the healing of my open wounds, but no infections and it seems to be progressing.  What is disturbing is that once my pain meds wear off the area where my dorsal vein burst is extremely painful and sensitive.  It feels like it's on fire.  I tried not taking any meds on Sunday and it was almost unbearable.  Also, the whole thing is hyper sensitive, so if I am not wrapped any brush of clothing is very painful.
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TonySa

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Re: Starting treatment next week
« Reply #55 on: October 02, 2018, 02:46:55 PM »

Oh my, hang in there guy
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS 18cm + 3rte

Travdixon

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Re: Starting treatment next week
« Reply #56 on: October 02, 2018, 02:55:59 PM »

Thanks TSanchez, I'm hoping I don't have nerve damage caused by the burst vein
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Travdixon

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Re: Starting treatment next week
« Reply #57 on: October 02, 2018, 07:29:57 PM »

Back to the Dr tomorrow.  I shouldn't have the amount of pain and swelling a week later.  Wants to see me first thing tomorrow morning
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pfract

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Re: Starting treatment next week
« Reply #58 on: October 02, 2018, 09:01:46 PM »

Good luck man!
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Penile fracture during sex, Portugal, August 2014 (no surgical repair, left with moderate ed) / ultrasound, full assessment with Dr Irwin Goldstein, San Diego, California March 2016 / Saving for implant; Dr Kramer, Dr Eid? 2020?

Travdixon

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Re: Starting treatment next week
« Reply #59 on: October 03, 2018, 12:00:18 AM »

Has to be something connected to the vein.  I can feel a weird line going down the side where it burst
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Travdixon

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Re: Starting treatment next week
« Reply #60 on: October 03, 2018, 01:13:57 PM »

It sounds like my lymphatic nerve was damaged when my dorsal vein ruptured, which is causing the immense pain and tenderness I am enduring.  Everything else looks good according to Dr Wachs.  He is discussing my case with Dr Faysal Yafi from UCI, as well as another Dr who has retired but was a specialist in Peyronie's.  Says what I am dealing with happens to less than 1% of patients, so I am a rare case.  We got to joke around a bit to lighten the mood, and he told me to stop having so many nocturnal erections.  "you and your erections!"  As downtrodden as I am, it's nice to have Dr Wach's support through this. 
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Travdixon

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Re: Starting treatment next week
« Reply #61 on: October 04, 2018, 02:33:25 PM »

Not a good day today.  Still dealing with intense pain, and while I have been able to work from home a few days, I'm in that depressed state.  My days consist of keeping my dressings clean, taking pain meds every 4 hours, and trying not to aggravate anything.  Can't do anything around the house, as any sudden moves bring on intense pain.  Traction, modeling, further injections just seem so far away at this point.  I simply want to be able to wear pants with no wrap and be comfortable.  It's been a week and a half since injection, and I don't see any light at the end of the tunnel, at least not today.  Even the thought of intimacy has me depressed as I am not sure I'll get even back to where I was two weeks ago. 
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Travdixon

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Re: Starting treatment next week
« Reply #62 on: October 04, 2018, 04:19:16 PM »

Dr Wachs just called me and my case has kind of become an international discussion.  Dr Lue is involved as are other Dr's in Europe and Australia.  All say my case, why rare, is not uncommon.  Dr Wachs has prescribed antibiotics as a precaution, just in case the pain is being caused by pus as opposed to nerve regeneration.  Never thought I'd be on the desk of so many Urologists
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Travdixon

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Re: Starting treatment next week
« Reply #63 on: October 05, 2018, 01:18:53 PM »

Another quick update, the addition of antibiotics seems to have taken a little edge off the pain I have been experiencing.  Not sure what that means but I'll sure as heck take it.  Most open wounds have scabbed up which is good as they no longer stick to my wrap.  Just one open wound left where my huge hematoma was on the side of the glans, and using non stick pads and neosporin there.  Pain during nocturnal erections still present but I've gotten used to it, as bad as that sounds.  Have another week and a half to heal before we try the second shot of round 2, if we do it at all.  We will see
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Travdixon

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Re: Starting treatment next week
« Reply #64 on: October 06, 2018, 02:36:09 PM »

Yet another day of sitting in a recliner waiting for my wounds to heal and managing my pain.  I haven't been able to find any documentation of Xiaflex causing a vein to rupture or cause nerve damage.  Am I the only case of this?  Could be as the list of doctors viewing my case seems to have grown.  So frustrating to have something happen to me that is not documented ANYWHERE.  Slowly becoming an expert in penile anatomy
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TonySa

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Re: Starting treatment next week
« Reply #65 on: October 06, 2018, 03:58:11 PM »

Very disconcerting, could doc just done this poorly...injected directly into a vein?
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS 18cm + 3rte

Travdixon

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Re: Starting treatment next week
« Reply #66 on: October 06, 2018, 04:04:37 PM »

I originally thought that but I watched the whole injection, and it was straight into the plaque.  Needle was bending and it took awhile for him to push all the meds in.  My ultrasound showed that while I have a large amount of plaque, it is very thin, and directly over my dorsal vein.  I believe the medication either went through the plaque, or the needle did.  Either way, the vein burst 2 days later during a morning erection.  In talking with my Dr, he said Dr Lue has even injected around the plaque as well as into it, but he isn't comfortable doing that.  I'm just so dejected
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TonySa

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Re: Starting treatment next week
« Reply #67 on: October 06, 2018, 04:14:16 PM »

Dr Lue is the go to expert on xiaflex!
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS 18cm + 3rte

Travdixon

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Re: Starting treatment next week
« Reply #68 on: October 06, 2018, 04:20:37 PM »

I know, I never thought I'd have him involved in my case.  I never brought his name up to Dr Wachs, even though I've seen his name all over the forum.  When he said he consulted with him, I was shocked and kind of happy to know my Dr had him in his group of cohorts.  But to hear that even Dr Lue was not too concerned, saying that all I can do right now is rest and recuperate kind of bummed me out.  I wish it was more like "we've seen this, do this, then do that", but as I'm sure a lot of guys hear have experienced with this condition is that when you hear to just leave it alone and it will get better, it bums me out.  I've got a freakin open wound that won't heal, what feels like a collapsed vein going down the side, and a lot of pain!  Sorry for the rant, I'm not one that's comfortable standing still, so to be confined to a chair all day is driving me crazy
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TonySa

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Re: Starting treatment next week
« Reply #69 on: October 06, 2018, 06:43:25 PM »

Any chance you can go see Dr Lue for an in person consult?
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS 18cm + 3rte

Travdixon

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Re: Starting treatment next week
« Reply #70 on: October 06, 2018, 07:11:48 PM »

I wish, I am in SoCal and he's up in SF.  It's possible, I'll bring it up when I see Dr Wachs again
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Travdixon

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Re: Starting treatment next week
« Reply #71 on: October 07, 2018, 05:12:36 PM »

Little victories now.  My last open wound FINALLY scabbed over, so no more sticking, wraps, and neosporin.  Swelling is almost gone.  Pain still very much present, but the signs of healing are all positive. 
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TonySa

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Re: Starting treatment next week
« Reply #72 on: October 07, 2018, 08:26:06 PM »

Good news!
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS 18cm + 3rte

Travdixon

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Re: Starting treatment next week
« Reply #73 on: October 07, 2018, 09:04:57 PM »

Thanks T, you and a few others here paying attention to my ordeal really help me through the dark times
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pfract

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Re: Starting treatment next week
« Reply #74 on: October 07, 2018, 10:30:55 PM »

Hey man... Nice to see you are having the support of so many urologists on this. As for the support of people here, it's one of the reasons I post. This place has helped me a lot as well.

Keep us posted
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Penile fracture during sex, Portugal, August 2014 (no surgical repair, left with moderate ed) / ultrasound, full assessment with Dr Irwin Goldstein, San Diego, California March 2016 / Saving for implant; Dr Kramer, Dr Eid? 2020?

Travdixon

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Re: Starting treatment next week
« Reply #75 on: October 07, 2018, 11:02:33 PM »

Thank you pfract, I don't think you guys know how much your responses mean to me.  When I am at my lowest point with this condition I always gravitate here as I know I am sharing my experience with others in the same boat. 
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Travdixon

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Re: Starting treatment next week
« Reply #76 on: October 09, 2018, 01:09:44 AM »

last scab opened back up ( I know, gross), so back to non stick wrap a little longer.  Pain not as bad now, but still there if I lay off the meds.  Site of injection still a little swollen.  Everything else has pretty much gone back to semi-normal. 
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Travdixon

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Re: Starting treatment next week
« Reply #77 on: October 10, 2018, 06:55:55 PM »

Alright now I would say I’m about 80% back to normal.  All wounds pretty much healed up.  Only thing concerning is the pain and a small”mass” where the injection took place.  Going to talk with Dr Wachs about that.
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Travdixon

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Re: Starting treatment next week
« Reply #78 on: October 11, 2018, 01:46:28 AM »

Dr thinks it’s an internal hematoma from when my vein burst.  Seeing him tomorrow.  Will update
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Travdixon

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Re: Starting treatment next week
« Reply #79 on: October 11, 2018, 03:19:00 PM »

Dr wachs, in consulting with the other Dr’s, has determined we should no longer do Xiaflex.  It’s just caused too much negative reactions in me at this time.  Wants things to calm down and return to normal.  Maybe revisit it at a later time, but surgery is sounding more and more likely in my case to correct my condition
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Travdixon

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Re: Starting treatment next week
« Reply #80 on: October 12, 2018, 03:48:48 AM »

Just want to thank everyone for viewing and commenting on this crazy journey of mine.  Not the outcome I was looking for, but I’d say at this point I’m glad I don’t have to endure what I’ve already gone through again.  I was truly dreading another injection.  If I live with my deformity or go the route of surgery, I truly feel I did what I could with Xiaflex, and it just didn’t work for me
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TonySa

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Re: Starting treatment next week
« Reply #81 on: October 12, 2018, 05:02:10 PM »

Sorry for all you’re going through, maybe an implant down the road would be a consideration?
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS 18cm + 3rte

Travdixon

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Re: Starting treatment next week
« Reply #82 on: October 13, 2018, 01:16:49 AM »

Thanks T that may end up being an option if all else fails.  If so I have a good support group behind me!
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Perceptible Curve

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Re: Starting treatment next week
« Reply #83 on: October 14, 2018, 05:00:22 AM »

That's sucks about your pain. Hope you improve soon. I too had a bad experience with Xiaflex. Told Dr I didn't want anymore shots and will discus further options. Hope to get grafting and maybe three piece prosthesis . Good luck with whatever you may do. 
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Travdixon

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Re: Starting treatment next week
« Reply #84 on: October 17, 2018, 03:28:21 PM »

Got a call today from the manufacturer to preauth another round, and after explaining what had happened to me it quickly changed to now they want to talk with me about my case.  Will keep you posted how that goes
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Travdixon

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Re: Starting treatment next week
« Reply #85 on: Yesterday at 03:10:06 PM »

No word from Xiaflex yet.  Saw Dr Wachs today, one month after last injection.  Still not fully healed.  Feels like my plaque did break up, but wants to see me in 6 weeks.  If fully healed, we are moving towards surgery
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lmn25

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Re: Starting treatment next week
« Reply #86 on: Yesterday at 10:16:11 PM »

Hey Trav,

I'm so sorry to hear about all of the recent trouble you've gone through. I've had some minor improvement in my curve after two rounds, and I was a little disappointed that things had not improved more and that I'm still experiencing pain, but after reading your experience, it's helped me keep things in perspective and made me grateful for the small progress I've had. I know that this condition is just as taxing mentally as it is physically, so I just wanted to say that I admire how you've handled the whole situation. The main thing is that you have a loving wife to go on this journey with you, and that's huge! While surgery isn't currently something that I'm entertaining, my doctor has told me in the past that if Xiaflex failed for me, surgery would be an excellent option and that it often gets an undeserved bad wrap (disclaimer: that's his opinion, and I know others here would disagree). But all that to say that you shouldn't give up hope and embrace the positives -- I know, easier said than done. :) Good luck and continue to keep us posted!

-L
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Travdixon

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Re: Starting treatment next week
« Reply #87 on: Yesterday at 10:48:51 PM »

Thanks imn25 it means a lot that people like you are here to support guys like me.  As you know, it’s not a topic you casually discuss around the water cooler.  It’s extremely personal and can be devastating emotionally.  I will admit it has made me depressed, and some days are worse than others, but I take comfort in being able to get it all off my chest here.  This place is a form of therapy to just let it all out.  If I can be of any help to others with my experience, it brings me a small glimmer of hope.  I will continue to update all of you here, and pray for the day I am pain free and back to my old self.
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