Occult tethered cord - my numb penis and PFD has a cause.

[pubh12 Member Find all posts View Profile Close pubh12]

I’m optimistic after find out out I have this my pelvic floor issues/ hard and long flaccid issues and penile numbness may be coming to an end (hopefully).

Occult tethered cord - very few doctors know of this - if you have hypermobilty in your joints (elbows, knees, fingers ) etc this may be of specific interest to you. Having joint hypermobilty is common in the PFD community , and it points to connective tissue disorders like Ehlers Danlos Syndrome and Benign Joint Hyeprmobilty disorders ( The specific disorder doesn’t really matter, faulty collagen in any of these disorders can cause major issues in the spine)

It is thought by the world expert Petra Klinge from Brown university , that people with joint hypermobilty syndromes are born with this. It can suddenly start causing issues as the hypoxia from the constant stretching can cause blood flow issues and damage to the spinal cord. The filum terminale of the spinal cord is much too tight. You can go from a point of perfectly functioning penis to not from this.

I can’t remember the rule about external links, but google Petra Klinge on YouTube and watch her lectures. It can be eye opening. (Look into Ehlers Danlos as well, my PFD was the only reason I ever found out I had it. Docs never catch it , it seems)


Does anyone find it discomforting to lay flat ? More comfortable in the fetal position? Discomforting to stand straight up and still? Muscle atrophy in the legs and pelvic region. (Your penis muscles will not do what they are supposed to do with this)

I’ve been in touch with Petra Klinge and am a candidate for surgery. (EDS and POTS can also point to occult tethered cord)

Fingers are crossed this makes a huge difference. I’ll also report back in a couple months after the surgery and let you all know how it goes.

[pubh12 Member Find all posts View Profile Close pubh12]

Also I should mention , don’t confuse this for a normal tethered cord. This is not visible on MRIs , as the stretchy filum will appear to be normal on scans. It’s why it’s SO hard to catch.

[Pegasus AdministratorPE Gym EditorPEGym Hero ☺ Admin of the Month Mar 2015 Find all posts View Profile Close Pegasus]

What did the doc say when he diagnosed you ?

[Big Al AdministratorPEGym EditorMale Enhancement Coach Rep.PEGym Hero Find all posts View Profile Close Big Al]

Thanks for this interesting data!

[pubh12 Member Find all posts View Profile Close pubh12]

So right now, I’m raising money for the surgery. Dr Klinge is 99% sure I have it based on my symptoms and co-conditions - so I have a consult followed by immediate surgery.

I asked her if this could be the cause of my PFD and numbness and if I would regain feeling in my penis after surgery. She seemed quite sure it would. There’s a power point presentation of hers if you google Klinge Occult tethered Cord where she mentions loss of any sexual desires and PFD as a common symptom of this.

Her biggest “alarm bell” for this condition is connective tissue disorders and joint hypermobilty. If you have that and PFD… there is a chance this is your issue.

Once I raise the money I need with go fund me , and the rest with a loan, I’ll hopefully be back to normal in terms of my downstairs.

[HelpmeHF Senior Member Find all posts View Profile Close HelpmeHF]

So right now, I’m raising money for the surgery. Dr Klinge is 99% sure I have it based on my symptoms and co-conditions - so I have a consult followed by immediate surgery.

I asked her if this could be the cause of my PFD and numbness and if I would regain feeling in my penis after surgery. She seemed quite sure it would. There’s a power point presentation of hers if you google Klinge Occult tethered Cord where she mentions loss of any sexual desires and PFD as a common symptom of this.

Her biggest “alarm bell” for this condition is connective tissue disorders and joint hypermobilty. If you have that and PFD… there is a chance this is your issue.

Once I raise the money I need with go fund me , and the rest with a loan, I’ll hopefully be back to normal in terms of my downstairs.

Have you looked into alternative reasons for your condition. Doctor's tend to have tunnel vision and they also want to make money so honestly I would get a second or third opinion. I've never heard of what you are talking about, also was your dick always like this? If you have a disorder shouldn't you just have a messed up penis most of your life?

I think most of us just have a muscle strain that gets aggravated because the PF muscle is being constantly utilized to its difficult to heal, what you are describing sounds super rare if its even a legit thing.

[pubh12 Member Find all posts View Profile Close pubh12]

It’s not all that rare , just rare to find a diagnosis as doctors rarely ever check for it. I’d recommend watching Klinges lecture on YouTube. If you have a connective tissue disease like EDS / JHS then it’s a very likely candidate

I’m sure you’re right that most of you it’s not the problem. If you have hypermobile joints inductive of connective tissue disease then this is something to dive deeper into!

[Raymondashley Banned Find all posts View Profile Close Raymondashley]

In general this syndrome should be treated.

[Raymondashley Banned Find all posts View Profile Close Raymondashley]

Because technologies have advanced so much.

[Raymondashley Banned Find all posts View Profile Close Raymondashley]

I know about your troubles. Some common reasons include trauma, surgery, long-duration sitting, heavy lifting, a sudden increase in activity level, previous infections, scar tissue, and stress. asserts this tightness and poor coordination of the pelvic floor often leads to the symptoms you are experiencing. I trust dissertation's info and research because my sister managed to prevent a disease based on the online platform. So consult websites on the topic.

[Pegasus AdministratorPE Gym EditorPEGym Hero ☺ Admin of the Month Mar 2015 Find all posts View Profile Close Pegasus]

Let me ask you a question icould your isssue be pelvic floor related ? If so you need physio not surgury .