Health Organization for Pudendal Education

Had the consultation conversation with one of Filler's MRN techs.
Went over the MRN finds and discussed treatment options including meds, injections, and procedures.

Regarding meds, I can try a course of cortisone pills to reduce inflammation which may release pressure on the nerves and help the numbness. The second med recommended was some kind of muscle relaxant to try and eliminate spasm that is putting pressure on the nerves contributing to the numbness.

Regarding injections, they said they have had a lot of success with the MR guided steroid injections to reduce inflammation more effectively than the pills. Filler can stay in the room while he does the injections since there is no radiation concern, and inject the proper area very accurately. He can watch the injected material to see how it distributes. Seems like the MR guided has a lot of advantages, but it is very far for me to travel, and getting insurance to pay for the injection will likely be difficult.

I can have a steroid injection locally under CT or fluoroscope guidance, so I need to consider that.

The good news is that my scan did not show any immediate need for surgery. Filler's person was fairly confident the injection, could help.

I asked if they have had patients with extreme numbness as the main problem as opposed to pain. The answer was yes, just not as common, and the injections were typically effective. Sometimes the injection needed to be repeated at a later date.

Filler will call my neurologist to advice him directly, so I am anxious to hear what he tells him. Sounds like Filler will try and contact him tomorrow. My guess is the recommendations will be similar to the ones I got with my conversation, but doctor to doctor talk might provide more detail.

I will make a decision on what course to pursue after the two doctors speak.

At least now I feel like I am on my way to some kind of treatment.

pn_person wrote: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

Rob, if your nerve/blood vessels are compressed between the ligaments surgery may be the only way to relieve it. I would be extremely careful about stretching because that could further damage the nerve due to stretch injury. If you try PT, make sure the therapist is very knowledgeable about PN and knows not to prescribed stretches that could injure the nerve.

I think it's reasonable to try a nerve block but remember some people get worse from them and also, I recall one guy reported on the forum that he had 7 nerve blocks from Dr. Filler. This was a few years ago so I don't know Filler's current protocol but 7 is more than what other PNE docs typically give.

Thanks for advice on the PT. Colorectal surgeon that I saw recommended a PT specialist that he really trusts in pelvic floor problems, so at least I have someone if Igo that route.

I am scared about the steriod injections I think I might need. Would freak out if I got worse.

Will probably have them done locally if I do them but I am torn becuase there are big advantages to Filler doing them under MR guidance as opposed to CT.
No radiation, especially if I am going to need more than one, and more accurate since Filler can stay in the room the entire time and even watch how the steroid material distributes in the injected area. Apparently that gives him an even better idea of where the nerves/vessels are being compressed.

Filler is supposed to call my neurologist today to advice on treatment, and based on that conversation I will have to make a decision. I am most likely going to try a course of oral cortisone (prednisone) first since I have not done that yet, and Filler's associate said that could be effective. Wow, that would be great if I could get rid of at least some of the numbness with an oral med, boy would I be psyched.

Thanks again for your help, you have been so helpful to me here, and I appreciate your experienced thoughts on my situation!!!!