Help in North Carolina?

[susansea]

> My mother is 86 years old and has been told that she has a pudendal nerve problem. We have heard such things as "pudendal nerve damage"and "pudendal nerve entrapment" from her doctors. This pain has been occuring off and on for the past 2 years. In the early years of her pain her primary care doctor prescribed several different treatments and finally gave her gabapentin (presuming that it was a nerve problem) and that worked for a while. When the gabapentin no longer was working, her PC doctor sent her to the Carolina Pain Institute in Winston Salem, NC. She saw Dr. Kapural and he was the first one to say that it was a pudendal nerve problem. In Dec. of 2010 she had a procedure done called "pulsed radio frequency". This worked and she was pain free for about 6 weeks and then the pain came back. He did the procedure again in March but this time she had no relief from her pain. He prescribed vicodin and said to continue to take the gabapentin. We still were hopeful that maybe someone could help her without having to take so much pain medicine. I found a doctor at Wake Forest Baptist Medical Center who said he specialized in pelvic pain. His office told me that he had helped people with pudendal nerve problems. He tried a couple of things but nothing he did helped. On her last visit to her Primary Care Doctor in Dec.2011 he took her off the gabapentin and she is now taking Lyrica 100mg twice a day. She is no longer taking the vicodin but does take one or two tramadol daily for pain. We would appreciate any suggestions that you might could offer for her care. It is so hard to see her in so much pain. The doctor gave my Dad the name of a doctor in Minn. that does pudendal nerve surgery and said that was the only option he knew of to help my Mom. At 86 years old would surgery be a good option for her? I have read conflicting reports on the effectiveness of the surgery, plus Minn. is a long way from Winston-Salem, NC. And at their age travel is a little difficult for them. Does anyone know of a doctor in NC that has helped them? Thanks so much.

[Faith]

I am so sorry you mother is dealing with this. I have not had the surgery, but I am scared of it and I am only 30. I think it would be very hard for an 86 year old to come through the long, hard recovery of the transgluteal (TG) pudendal nerve decompression surgery. There are several doctors around the States who offer this surgery - you can find more on the the home page under doctors, but a few are Dr. Ansell (Houston), Dr. Conway (New Hampshire), Dr. Antolak (Minnesota), Dr. Hibner (Arizona). There are not any pudnedal neuralgia specialists or surgeons in North Caronlia that this site is aware of, but it sounds like she has had pretty good care so far. Has she had a pudendal nerve block (injection with steroid)? This is rarely currative, but a step in the official diagnosis process of most surgeons. I am glad she had such good relief with the PRF. Is that something she is considering having again?

On this she might want to do is get an MRI with Dr. Hollis Potter in NYC. She has software and is trained to look for pudnedal nerve entrapments. If she primarily has vulvar/clitoral pain she could have damage to the dorsal branch of the nerve which would be a different surgery than the TG approach so this would be something that would be good to check on before having a possible unnecessary surgery.

How did this pain begin? Has she seen a pelvic floor physical therapist? There are some great physical therapists and it's possible her pain is only from pelvic floor dysfunction'/neuralgia and not a true entrapment and she could get better with lifestyle modifications and therapy (not surgery).

I wish you all the best. We are here to help if there is anything that we can do. Give her our regards.