Health Organization for Pudendal Education

Just got my MRN result.

Showed PN entrapment, PN irritation, and significant vein swelling along the same course as the PN.
I will have to post the text from the report.

Has anyone else had vein swelling associated with their PN issues??

I am focused on the vein swelling because I also have edema (swelling) in the genital area, and know that a compromised venous return can be the cause of that.

My symptoms are primarily severe numbness and not pain, but it all started with the edema.

I suspect the edema caused the PN issues since the edema came first, but I could easily be wrong on that.

All MRN findings were greater on left than right which is consistent with my symptoms.

Report was very impressive in the amount of detail. I have had numerous scans leading up to the MRN, all negative, and none showed near this level of detail.

My neuro doc is not sure what to do as far as treatment, so I asked him to speak with Filler directly. He said he would consult with him, and I am waiting for that to happen.

Thanks all in advance for feedback!!

Rob

Glad to hear that you found some answers with your MRN. Most of us have had normal MRIs of the pelvis/abdomen and then finally went to Dr. Potter for her MRI and like you, the areas of complaint match the MRI. It is nice to find out that the MRN had such great detail as that has been a question on this forum.

The vein swelling/enlargement has been a consistent finding on MRIs that Dr. Potter has done. If you look through some of the other threads on MRI results by Dr. Potter you will see lots of discussion on whether the swollen vein can compress the nerve. Violet recently posted a publication by Dr. Possover who observed that a swollen vein can entrap the sciatic nerve.

I know Dr. Filler is a big proponent of piriformis surgery. In my humble opinion, you should seek a second opinion on what to do about any type of surgery. No dr. is perfect and I have found sometimes there are as many opinions as there are dr.'s especially when it comes to newer areas of investigation and treatment. Do your own homework and then you will know what is the best treatment for you.

Good luck and prayers are sent your way.

Thanks for your reply.

If the swollen veins can cause pressure on the PN's, do you know of any treatmtent for the swollen veins?

I think it is likely that the swollen veins are indeed causing PN issues in my case becuase it fits the progression of my problems.

Genital edema first prior to any nerve symptoms. If that edema was cause by a venous problem, it makes sense that all the nerve symptoms are being caused by the swollen veins which I now have documented by the MRN.

I have sent a copy of the MRN report to my vascular surgeon to get his thoughts and determine if the veins can be treated.
He always suspected a venous flow problem causing my edema but could not find it even with an MRV. That was a while ago, perhaps if I repeated the MRV it would show up now, but seems unnecessary with the Filler MRN findings.

I am thinking if I can successfully treat the vascular issue, the nerve issues might just go away.

Nerve symptoms contine to progress.
Numbness real, real bad, genital/perianal areas, and very significant constipation from paradoxical muscle contractions due to PN damage. It is horrible.

Anxious to hear from anybody who knows of or has had treatment forthe swollen veins.

-Rob

Dr. Hibner has just started to inject a sclerotizing agent into the dorsal vein to collapse them. Technique like used for some varicose vein procedures for the legs. Hopefully your vascular surgeon will be able to give some good recommendations.

thanks

not sure if the swollen veins found on my MRN involved the dorsal vein
the report did not mention the name of the veins, it just described their location

which one is the dorsal vein?

Hi Rob,

Sorry to hear about your problem, but your theory makes sense. It seems that anything that puts pressure on the pn is going to irritate it. I have been chronically constipated for quite a while and I think that has been irritating my pn.
I have been taking miralax faithfully and starting to feel so much better almost no pain. I don"t know anything about getting your veins from swelling but maybe your Dr. can help you with that.
Please take care of your constipation. I think that is so important!!! Try to sit as little as possible as that takes pressure off the pn. When you have to sit use a donut or some kind of cushion. I wish you the best and please keep this community updated on your progress.

Laura

posted a reply here yesterday, but do not see i t, so sorry if it appears twice

think I was just saying that I also take miralax daily, but it is still a struggle and I can definitely confirm that even a limited amount of straining exacerbates the PN problems, in my case numbing

after BM, even with no straining, the numbing extends for a period of time all the way up through the lower abdomen

my neurologist sent a fax to Filler yesterday asking for advice on treatment options..so hopefully Filler will reply quickly with some suggestions

also set up a consultation conversation to discuss the MRN results with Filler's MRN tech, also trained in therapies..that is on for Tues

so should have some treatment options soon from Filler and/or his tech

thanks all for your interest and helpful posts...the forum is a huge benefit with so many people going through the same or similar situations...can't imagine having such an uncommon condition a while back with no easy access to this kind of information

Rob, I know someone who had swollen veins due to a back-up of blood from compression between the ligaments causing throbbing pain and other symptoms. She had the MRN from Filler and it showed a back-up of blood in vessels (enlarged veins). PN decompression surgery in Houston remedied the throbbing and some of the other problems although her pain did not completely go away.

So in your case I don't know if it's: 1. The ligaments are compressing the nerves and blood vessels causing back-up of blood with accompanying numbness or 2. The swollen veins are impinging on the nerves causing numbness. Maybe Dr. Filler will be able to give you an opinion on this. But I agree with nyt that it would be good to get a second opinion from another PN doc.

Violet

if it is (option 1) the ligaments compressing the nerves and vessels, what is the treatment?
would that require surgery, or perhaps PT to stretch the ligaments??
hopefully not surgery to cut the ligaments, ouch

if it is (option 2) the swollen vessels causing the nerve issues, I guess the primary problem would be vascular and the treatment would have to be vascular also...I already sent the report to my vascular surgeon who should get back to me this week..he will probably want the disk of images which I do not have yet

thanks again for your help Violet!!

Have a consultation phone call arrange with Filler's MRN tech within the hour to discuss the scan findings and to go over next steps for treatment.

Feel like I have a lot riding on this call. No other plan in place right now for diagnosis and/or treatment.