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?
Marfans Syndrome and Venous Leak
Re: Marfans Syndrome and Venous Leak
Welcome to the forum.
I'm sorry but I know nothing on that topic.
I'm sorry but I know nothing on that topic.
R.R.P 2011 Mayo Jacksonville, Dr. M. Wehle. Nerve sparing - damaged. C in margin. Radiation 2023, V.E.D, Viagra and PGE-1 (80mcg/ml) injections @ ~ 14 units. Originally Edex20, then compounded PGE-1 - cost. Inject. 12 yrs. It works. Treasure coast of FL.
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Re: Marfans Syndrome and Venous Leak
walnut99 wrote: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?
How old are you, and do you have the classic symptoms of marfan syndrome?
My doctor speculated about my tunica too. I get a little bit of hourglass shape that may or may not be noticeable. Kind of comes and goes if that makes sense. I certainly don't understand why it is, but I speculate that I damaged myself at one time. I think the penis is extremely complex and complicated and these doctors don't know everything there is to know. They see many, but they are all different so they can only speculate until we have definitive tests and exams to show the facts. I think people should stop being at the mercy of the medical community and demand better care.
Re: Marfans Syndrome and Venous Leak
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.
Re: Marfans Syndrome and Venous Leak
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
Married 36 years to my beautiful young bride
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4+ years, Coloplast Titan OTR
Married 36 years to my beautiful young bride
Always here to answer questions if you PM me
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- Posts: 663
- Joined: Thu Jun 30, 2022 2:17 am
Re: Marfans Syndrome and Venous Leak
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.
I'm not a doctor, but it sounds like there is no conclusive evidence that you have marfan's syndrome. If you don't have marfan's syndrome, or any of the classic symptoms associated with it, then I don't see the likelihood that it is somehow weakening your tunica albuginea. Is it possible? I suppose, but I would want to see the conclusive evidence and that will probably never happen because the doctor is only speculating.
48 is not all that old.
When you say lifelong ED, do you mean ever since you were like a teenager?
Do you have other health issues?
What solutions have you tried besides using a VED?
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