Health Organization for Pudendal Education

Thank you Violet.

APPT. W/ LORETTA & Dr. HIBNER

We are back from our trip across the country........WOW! Ms. Loretta is SO kind and knowledgable. She spent about an hour with my daughter and confirmed pudendal compression. ( most likely at the clitoral nerve (?) or at the the last branch of the pudendal nerve)
She tried some different massage techniques and definitley thought my daughter had a restricted pelvic floor and is hopeful that stretching, massage and NO STRESS (lol I guess this means no discipline hahah) will make a difference. (PRAISE GOD)
We have home therapy to try and Ms. Loretta has made herself available in the future for questions. I can NOT empahsize enough how glad I am that we saw Loretta as part of our visit, b/c of her ability and experience and Dr. Hibner's trust in her we avoided an exam with Dr. Hibner ( aloso b/c of her age) Loretta does not think the SI joint has anything to do with any of this, she is young her ligaments and joints, and bones are still growing so some give is completley normal and to be expected at this age. So all of the muscle strengthening we were attempting to do through our home PT is helping to keep things tight rather than relaxed. Our improved symptoms are probally more atributed to home school ( less stressful) and the colon clense we had to do when we were preparing for the colonoscopy. So keeping her cleaned out and not allowing her bowells to get backed up will continue to help. ( keeping inflamation down)
I am not discounting our PT pursuit here at home, I just TRUST what Loretta says as she is VERY knowledgable. And if you recall some of the exercises we tried early in PT made things worse, I shared with loretta those stretches we did with the band around the knees( PT) and the leg lifts she did at the boxing gym when her dad took her to work out, and they made symptoms worse immeadiately. She said that would be expected given the location of compression b/c those exercises irritated the nerve by cuasing those muscles to tighten. I asked Loretta about Yoga and she thought that would actully be beneficial, so I amlooking into that.

Our appt. with DR. HIBNER.....there is something about the anticipation of getting to this point. (I was very emotional, and we met a lady from California who was there after an 8 month wait to see him for PN as well, (I trust you had a good experience with him.) He IS SOOOOOOOOOOO kind and caring. She is the youngest patient both he and Loretta have seen and they both were hoping this was not what she was dealing with. Dr. Hibner met my little girl and was so kind to her, very calming. He wants us to try the things Loretta put in place and call him in a couple of months. Down the road IF things are not improving we will discuss doing a nerve block. This block would be doen in the operating room uinder sedation (obviously b/c of age) and would NOT need to go into the pudendal nerve. Instead he would go directly to the clitoral nerve ( the last branch of the pudendal nerve) which he says is the most non invasive type of block he could do. He would use a very small needle and it would be ultra sound guided. Of course he cannot promise that it won't make things worse, so we would cautiously consider this if needed in the future.

Over all a trip worth the money.(I am thankful for faithfulness/ We had favour ) I hope they will use my daughter as a case study, to pave the way and bring this to light for other children.

I will let you know how our home therapy goes.
Thanks for your thoughts and prayers
MOM

I am so happy to hear that this trip was worth it for you. I will pray that with Loretta's suggestions that you will be able to get this under control. I can't imagine the relief to have a diagnosis and a treatment plan that will work. And yes, Dr. Hibner should publish your young daughter's case so others start recgonizing that this can effect any age. Hopefully, his work with your daughter will develop treatment plans that are age appropriate. Please keep us posted on her progress.

Mom, thank you for sharing about your daughter. I am really sad to hear she is battling PN at such a young age but glad that you are finally on the right track and I will continue to pray for healing for her.

Thank you so much Violet

mom wrote:Instead he would go directly to the clitoral nerve ( the last branch of the pudendal nerve) which he says is the most non invasive type of block he could do.

Must say I'm surprised by this. I asked Dr. Peng (Dr. Gordon in Toronto's anaesthesiologist) if he would consider doing a block at the level of my dorsal/penile branch (same spot you're talking about, just the male equivalent). He was reluctant, as he's done tons of pudendal nerve blocks, but never one to the dorsal branch...as a result, he brought me in & did an exploratory ultrasound of the area in question (minus the injection), just to see if he felt comfortable that he'd be able to safely do the block there. Ultimately, he decided not to go ahead w. it, as he felt the area was just too tight (again, as compared to where the 'traditional' block occurs) and there was too much risk of accidentally nicking something (nerve, artery, etc.).

Now, obviously there's got to be some difference in the anatomy between genders, but I'd still be surprised if there's much more room to maneouver at that same site in females. Anyway, that's what Peng told me (& I trust him...he's an internationally renowned anaesthesiologist, who I believe actually helped develop ultra-sound guided blocks), so you may want to get a 2nd opinion if/when the time comes to consider said block.

Hopefully the PT will do the trick & that won't be necessary though!
Good luck with it,
PS.

Dear mom and Pelvis,

When I had my dorsal nerve surgery with Dr. Oskar Aszmaan,his radiologist did a Ultrasound doppler to visualize my dorsal nerve of the Penis and it was found to be 3 times more inflammed on my worst size and twice more inflammed than the normal size of my right size.

I guess that Dr. Hibner can get in touch with Dr. Aszmann and get to know how to do the Ultra doppler test visualize the dorsal nerve.I believe this technique is being used in Germany.

Another way to do would be to do the PSSD test used by Dellon(he doesn't take insurance and the whole test will cause US $1,100) or Dr. Ducic in Washington DC because he does take insurance.

All the best,
Ali

AliPasha1 wrote:When I had my dorsal nerve surgery with Dr. Oskar Aszmaan,his radiologist did a Ultrasound doppler to visualize my dorsal nerve of the Penis and it was found to be 3 times more inflammed on my worst size and twice more inflammed than the normal size of my right size.

Not sure how this would be possible Ali, as the Doppler test strictly evaluates blood flow and pressure in blood vessels (and doesn't focus at all on nerves).

I do agree that the PSSD test would be another viable (& potentially less intrusive) option though.
Take care, PS.

pelvis stressly,
From what I read, the pudendal nerve and its branches are paired with blood vessels. If the pudendal nerve is entrapped, there is a fair probability the blood vessels show compression as well. I read in one of the French articles that the correlation between a nerve entrapment and the associated blood vessel being compressed to be around 65%.
In fact, I should retrieve that article and translate it. It was quite interesting.

Shafik did 2 studies in the 90's that showed that patients can present w. pudendal arteriopathy without any accompanying neuropathy. I can find the links if you're interested.

And even if there was an indisputable connection bet. the 2 (blood & nerve), I still don't see how a Doppler test would give you specific info like the degree of nerve inflammation that Ali mentioned (no offence Ali, just not sure how that would technically be possible).

pelvis stressly,

Thank you for your input. I appreciate the opinion and experience. That is very interesting to know. At this point I am against any type of block as I think she is to young. She does experience abdominal pain, headaches, upper thigh aches, and some shoulder ache /pain.
It is hard for me to know exactly how much pain she has,so it is hard for me to make a decision to do any thing that may make things worse.
I am hopeful that the things Loretta gave us to try will help in releasing the dorsal nerve. ( along with continued faith)
She has been doing well, minimal itch, but she has had increased headaches, so IDK. The symptoms that come along with this are so varied.....it is hard to know what is PN related and what could be something else. She expresses what she is feeling the best she knows how. I do know that constipation has a big impact on the severity of symptoms. Also when I let her ride her bike her itch became worse, so I need to egt her that special seat. I am just thankful for her/me to be validated and having a goal to move towards.

MOM