Peyronies Society Forums

Please login or register.

Login with username, password and session length
Pages: [1]   Go Down

Author Topic: Wife needs help choosing physicians for husband  (Read 292 times)

0 Members and 1 Guest are viewing this topic.

TheBoykinLady

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Female
  • Posts: 16
Wife needs help choosing physicians for husband
« on: June 03, 2021, 10:25:30 AM »

Good morning everyone.
First, allow me to thank you in advance for anything you can add that may help.
Second, you are all rock stars in my book. The amount of help and understanding for your fellow man is amazing.
Third, I need your help and this is why:
1. We have a local HMO insurance plan and we've been approved to see any Andrologist or Men's Sexual Health physician at Tampa General, Advent Health, or University of South Florida. 
2. My husband is not an optimal Xiaflex candidate due to hemophilia and the drug side effect profile, per his hematologist.
3. He wants to go straight to implant and kill 2 birds with one stone.
4. From my research, this leaves us with Dr. Rafael Carrion @USF. If you have experience with him or anyone else in the above parameters, please let me know what and how thing went.
5. If you've had Peyronies and severe Erectile Dysfunction, did your physician take the Erectile Dysfunction into consideration when deciding your treatment plan? How so?
6, THE major concern for us is, how do we get a physician to consider long term Erectile Dysfunction when treating Peyronies disease? He can NOT undergo multiple procedures with his hemophilia. He had an appt. in May with UF Gainesville for a reconstruction surgery consult and that was a complete failure. He walked out asking "Why would I go through all of that if I can't use it after I recover and why would I risk bleeding to death just to make it look better flacid?". I had no answer for him and I am not sure I can handle seeing him so depressed again. UF recommended Xiaflex and dot plication or "Work with what you have because implants fail frequently and you're too young to risk it". He is 48 years old.
Many thanks for any help you can provide.
 
Logged
48yo wife of Erectile Dysfunction and Peyronie's patient with hemophilia (waveboy).
I'm looking for answers but am happy to answer any questions you may have.

GaussRifle

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 315
Re: Wife needs help choosing physicians for husband
« Reply #1 on: June 03, 2021, 10:39:31 AM »

While I can't answer all of your questions, I can answer this... if you have erectile dysfunction unresponsive to meds like cialis and viagra along with peyronies, an implant is the gold standard. My doctor from Mayo Clinic, Rochester made that clear. They are saying he's too young to risk it at 48 ? Are they joking with you ? Looks like they don't know how to do the job properly. There are many men in their 20s here who got implants. I'm 26 years old and I consider them too. 
Logged
26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

TheBoykinLady

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Female
  • Posts: 16
Re: Wife needs help choosing physicians for husband
« Reply #2 on: June 03, 2021, 11:14:15 AM »

Thank you. Yes, basically University of Florida Urology said he was too young, due to implant failure and revisions. He is unresponsive to Erectile Dysfunction meds and I really wish they were joking but unfortunately, they weren't. They measured his Peyronies curve from a photo HE provided from a mild semi erect state. They never measured him or did an US either.
Logged
48yo wife of Erectile Dysfunction and Peyronie's patient with hemophilia (waveboy).
I'm looking for answers but am happy to answer any questions you may have.

GaussRifle

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 315
Re: Wife needs help choosing physicians for husband
« Reply #3 on: June 03, 2021, 11:21:13 AM »

Are they concerned about revisions in your husband's case in particular due to his hemophilia?
Logged
26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

TheBoykinLady

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Female
  • Posts: 16
Re: Wife needs help choosing physicians for husband
« Reply #4 on: June 03, 2021, 11:32:21 AM »

Yes, but they had no issue recommending plication or Xialflex. In his hematologists opinion, xiaflex is more dangerous than surgery due to its prolonged treatment plan spanning several weeks or months. Neither address the Erectile Dysfunction. We both share your opinion of the gold standard but we can't seem to make any progress. This surgery, to him, is no less important than having a heart valve replaced or his appendix removed. His (controlled) moderate hemophilia, age, or the UF physicians exaggerated device failure rate should be no reason to exclude him from an implant. I hope no person here gets referred to UF again, it was that bad.
Logged
48yo wife of Erectile Dysfunction and Peyronie's patient with hemophilia (waveboy).
I'm looking for answers but am happy to answer any questions you may have.

Stabler

  • Global Moderator
  • ****
  • Country: us
  • Offline Offline
  • Gender: Female
  • Posts: 653
  • God made us all different for a reason.
    • Diabetes and my Life
Re: Wife needs help choosing physicians for husband
« Reply #5 on: June 03, 2021, 01:24:02 PM »

Welcome to the forum, please check out the PM I sent to you, it has some very helpful links in the forum that could be helpful to you.

Stabler
Logged
Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

Mikel7

  • Think Tank
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 558
Re: Wife needs help choosing physicians for husband
« Reply #6 on: June 03, 2021, 03:23:01 PM »

In my opinion it seems that in your husbands case he is very limited in his choices.  If I was in hisshoes I would definitely only go with Dr Eid in New York.
  He has an outstanding track record and a real love for his patients.  I firmly believe that when it comes to our health ( especially our penises) you cannot put a price tag on it.  ( I went 2000 miles to have my heart surgery done because of the Dr - and it cost $ 176,000.00 )  Hope this helps.
Logged
Lump April 2020, age 60 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

TheBoykinLady

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Female
  • Posts: 16
Re: Wife needs help choosing physicians for husband
« Reply #7 on: June 03, 2021, 07:18:36 PM »

Thank you mikel7 but unfortunately, given his occupation, a trip to NYC is out of the question. We both understand priceless and would love for him to see Dr. Eid but it's just not possible. 
Logged
48yo wife of Erectile Dysfunction and Peyronie's patient with hemophilia (waveboy).
I'm looking for answers but am happy to answer any questions you may have.

Mikel7

  • Think Tank
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 558
Re: Wife needs help choosing physicians for husband
« Reply #8 on: June 04, 2021, 05:47:46 AM »

I'm sorry, but I believe you will find the right choice for your husband because you are researching things out and not rushing into something blind. Good luck  :)  Mike7
Logged
Lump April 2020, age 60 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

Joe_D

  • PDS Newbie
  • *
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 2
Re: Wife needs help choosing physicians for husband
« Reply #9 on: June 08, 2021, 10:59:27 AM »

BoykinLady, I have had similar difficulties here, getting physicians to actually assess the state of my curvature rather than just make recommendations based on me filling out a questionaire. How can they fix it if they don't know how bad it is???
Logged

tshug

  • Radical Prostatectomy-2017, AUS800-2018, AMSCX- 2020
  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 33
Re: Wife needs help choosing physicians for husband
« Reply #10 on: June 08, 2021, 02:04:20 PM »

I speak from experience in being real careful in choosing a surgeon for penile implant surgery. I had dealt with Peyronies and impotence issues before having implant surgery.

I was referred to a surgeon here in the Boston area and had the surgery in December. Though the surgery corrected the Peyronies bend the surgeon undersized the implant cylinders so that when the implant is inflated now the penis head flops down. Sorry for being so graphic but it is important to know some of the pitfalls for this surgery.

Because of the penile implant forum also on this site I heard about Dr Eid and his expertise with this type of surgery. I first had a video conference call with him and then followed up with an in person appointment at his N.Y. office. His diagnosis was that it was undersized and replacement surgery would be needed to correct the problem. I will have the surgery done by Dr Eid later this year.

Your husband is to young to not pursue all his options. I saw where you mentioned a trip to see N.Y. is not possible, but a video call with Dr Eid doesn’t cost a lot and after seeing your husband and given his opinion he may be able to refer you to a surgeon near where you live. I can not stress enough to check and double check the surgeon you decide on if your husband decides to have the surgery. The more experienced the surgeon the better. Dr Eid does hundreds  of these surgeries a year. If your surgeon doesn’t do as many or close to it I would walk away.

Good luck and I hope everything works out for you and your husband. If you have any questions let me know.

tshug
Logged
70 Yrs old
Radical prostatectomy in 2017.
That surgery left me incontinent
2018  implanted AUS 800 artificial Urinary Sphincter
Erectile Dysfunction & Peyronies
AMS CX Penile Implant Surgery 12/16/2020
My surgeon shorted me on cylinder length
seeking a revision

TheBoykinLady

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Female
  • Posts: 16
Re: Wife needs help choosing physicians for husband
« Reply #11 on: June 10, 2021, 08:00:48 AM »

Thank you. The reason I asked specifically about Dr. Carrion is because he was referred to us by Dr. Eid. I'm not questioning Dr. Eid's recommendation, only curious how Dr.Carrion conducts his treatment protocols. I do not want my husband to walk in and be expected to go through Xiaflex again if he doesn't want it. I'm mostly trying to get a feel for how Dr. Carrion runs his clinic since he is a professor. Does the University require all of his pt's have to go through certain testing, prove other tx's failed, etc,. before he would be considered for IPP?   
Logged
48yo wife of Erectile Dysfunction and Peyronie's patient with hemophilia (waveboy).
I'm looking for answers but am happy to answer any questions you may have.
Pages: [1]   Go Up
 

Related Topics

  Subject / Started by Replies Last post
3 Replies
2393 Views
Last post October 02, 2012, 08:14:23 PM
by james1947
3 Replies
1423 Views
Last post February 15, 2015, 03:23:54 PM
by james1947
1 Replies
1819 Views
Last post April 17, 2018, 07:12:23 AM
by james1947