Marfans Syndrome and Venous Leak

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walnut99
Posts: 25
Joined: Thu Jul 28, 2022 4:50 pm

Marfans Syndrome and Venous Leak

Postby walnut99 » Thu Aug 18, 2022 11:10 pm

I have a congenital venous leak and Dr Eid speculated that the cause might be a weak/loose tunica albuginea. I have a family history of Marfan's Syndrome, although I was not diagnosed with it. Dr Eid thinks there is a connection between marfan's and a weak tunica albuginea.

Anyone heard of this or come across any info on it?
49 yrs.VL based ED since teen yrs, most likely congenital.Pills, shots worked 4 functional sex life. Pills stopped being effective,shots less so.Trimix caused peyronies.Ipp dr Eid may 2024. 22 cm, 2cm RTE on left, 2cm cut on right
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bldoink
Posts: 3918
Joined: Mon Apr 03, 2017 12:58 am
Location: Fl.

Re: Marfans Syndrome and Venous Leak

Postby bldoink » Fri Aug 19, 2022 12:32 am

Welcome to the forum.

I'm sorry but I know nothing on that topic.
R.R.P 2011 Mayo Jacksonville, Dr. M. Wehle. Not nerve sparing. C in margins. Radiation 2023, V.E.D, Viagra and PGE-1 (80mcg/ml) injections @ 8 - 14 units. Originally Edex20, then compounded PGE due to cost. Inject. 12 yrs. It works. Treasure coast of FL.
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walnut99
Posts: 25
Joined: Thu Jul 28, 2022 4:50 pm

Re: Marfans Syndrome and Venous Leak

Postby walnut99 » Mon Aug 22, 2022 3:24 pm

hi, i am 48. lifelong issues with ED, VED. no real issues with marfan's but it is in my family and doctor thinks it might be ultimate cause of leak by weakening the tunica. the doctors dont know everything. please let me know how i can help.
49 yrs.VL based ED since teen yrs, most likely congenital.Pills, shots worked 4 functional sex life. Pills stopped being effective,shots less so.Trimix caused peyronies.Ipp dr Eid may 2024. 22 cm, 2cm RTE on left, 2cm cut on right
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Old Guy
Posts: 2703
Joined: Tue Mar 31, 2020 4:31 pm
Location: Ohio

Re: Marfans Syndrome and Venous Leak

Postby Old Guy » Mon Aug 22, 2022 4:07 pm

walnut99 wrote:hi, i am 48. lifelong issues with ED, VED. no real issues with marfan's but it is in my family and doctor thinks it might be ultimate cause of leak by weakening the tunica. the doctors dont know everything. please let me know how i can help.


Welcome to the forum. Pretty much everyone here is friendly, and a lot of knowledgeable guys. Hopefully reading some of the posts here will help you determine the direction you want to go.
I wish I had found Frank Talk when my ED began. I didn't find it until 5 months after my surgery.
Nov. 8, 2019
4+ years, Coloplast Titan OTR
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