Saturday, July 23, 2011

Upcoming Pudendal Neuralgia Specialist Consult

In about 3 1/2 weeks I will travel to see one of the leading specialists for pudendal neuralgia (I really like this concise article that explains pudendal neuralgia, its diagnosis and treatment options). This doctor is one of only about a dozen surgeons in the world who perform surgery to release the pudendal nerve if it has become entrapped in ligaments, muscles, or scar tissue. Here is a great link to an online radio talk show interviewing one of the country's leading pelvic floor physical therpists and pudendal neuralgia experts.

This appointment will most likely only be a consultion. There are still other things such as botox injections that he will probably want to try before surgery is even considered (I may unfortunately have to make multiple trips to Arizona).  I have had a few hours relief from a pudendal nerve block and most of my symptoms are characteristic of pudendal neuralgia (PN).  But I have also been diagnosed with sacroiliac joint dysfunction in the past. I have had physical therapy manipulations of the SI joint, worn an SI belt to stabilize my pelvis, and tried an SI joint injection with no relief.

While it seems most likely that PN is the correct diagnosis, I worry that maybe I have waited 7 long months for this appointment in Phoenix for nothing. Maybe the doctor will not think I have PN, then what will I do next? Did I make the wrong decision to go to Phoenix? I have prayed about this decision a lot and even pray now that if it is not the right direction to take that God will not allow us to go to Phoenix. 

It is easy when we have big decisions to think and worry that the final outcome is dependent on ourselves. That we could choose to do something that is outside of God's will for us.  But I am not so sure that is really possible for those who are called children of God. Proverbs 16:33 tells us,
"The lot is cast into the lap, but it's every decision is from the Lord."
God in his divine providence is working all things according to the counsel of His will (Ephesians 1:11). Nothing happens by chance. Even our "bad" decisions are being used by God to bring about His purposes.  Verses like this and Proverbs 16:9 and Isaiah 46:9-10 bring great encouragement to me in times of doubt and worry especially concerning decisions. 

If God is control of the outcome of the blind casting of lots, I know that I can rest assured that God is in control of my life! Whether I go to Phoenix and have a confirmation of my diagnosis of PN and get treatment or I go and find out there is nothing they can do to help me, I know God is working all things for my good and His glory (Romans 8:28)!


  1. I'm in a similar position as you, SI joint problem, and pudendal issues, not knowing what to do. You may be interested in a man named Jerry Hesch who invented a unique manipulation method. He has a six part video on Youtube where he helps reduce the pain of a woman who has pudendal neuralgia. He lives in Nevada, but has trained many people throughout the U.S. So, if you like, check him out. If you email him, he'll let you know if he knows of anyone near you. Concerning Hibner, I would ask him about his success rates before going for surgery. Also, if you don't know, is a website that lists many doctors, some on the east coast as well. Sometimes, tight pelvic muscles can cause this stuff, and there are also books on that...Heal Pelvic Pain by Amy Stein, A Headache in the Pelvis by a guy named Wise and someone else (sixth edition) Oh, and a woman named Potter from NYC supposedly can do a special MRI scan to check for nerve entrapment. Hibner recommends her. Any way, Good luck. Bill

  2. Hi Bill,

    Thanks for your comment. I am familiar with Jerry Hesch and have emailed a good deal with one of his employees. I know of someone a couple hours from me who is trained in his manipulation method, but I am leery of PT manipulations now after that is what seemed to cause most of my problems. The link I posted on pudendal neuralgia actually has Hibner's success rates. 40% show significant improvement, 30% show some improvement, 30% have no improvement, and 1% get worse. I am going to have a 1.5Tesla MRI read by Dr. Kalinkin who is a radiologist trained by Dr. Potter in NYC while I am in Phoenix. I have read both the Amy Stein book and "A Headache in the Pelvis." I am on Pudendahope forum so if you are too maybe we have talked before. I think if Hibner thinks my main issue is SIJD that I will probably go with treatment from Vicki Sims, PT in Gainesville, Georgia (don't know if you are familiar with her). Thanks for your comments and wish you the best as well. If you find good treatment please let me know.

  3. Hi Hannah. I believe in the interview you posted, Dr. Hibner said that he is currently going thru his patient list to determine his success rate. I was told that the rates he has posted in the past are simply the rates from France etc. However, once he concludes his study, I would trust was he says completely, unlike Doctors like Aaron Filler, who seem to be all about ego and money. To Dr. Filler's credit, though, he invented MR Neurograpy, which supposedly allows nerves to show up sharply on MRI's, and to give a clear picture of entrapment. I was surprised that Dr. Hibner didn't mention this technology in the interview, when he was talking about how difficult it is to get a good picture of the nerve. I don't believe Dr. Potter uses MR Neurograghy. It's more expensive than a regular MRI, and a lot insurances won't cover it. Maybe she figured out how to use Dr. Filler's ideas in a slightly different way without violating his patent protection, because I heard that MRIs can't photograph nerves without that technology. I would be interested if you know something about that, Hannah, and yes, I'll keep you posted if I find something worthy. Bill

  4. Bill,

    Yes, I will ask Dr. Hibner if he has concluded his study yet and what his personal surgical rates are. He did mention imagining such as Dr. Hollis Potter in the radio show link, but said that they are not definitively used for diagnosis at this point. I do not know exactly how Dr. Hollis can visualize the nerve. She uses a 3T MRI which is about 10-15 times stronger than a normal MRI and she has developed special software that supposedly allows her to better visualize the nerve. She seems to mostly visualize scar tissue and enlarged blood vessels so I wonder if she somehow works off density of structures, just my theory. From what I understand Filler's MRN is a 1.5Tesla MRI with special "patented" signaling coils that alow for nerve visualization and he named it the MRN. Filler's MRN reports for PNE that I have seen mostly show entrapment at the piriformis muscle which doesn't seem to correlate to what most surgeons find (alcock's and ST/SS ligament). I personally think they are both still very new to visualizing the pudnedal nerve and it will probably be some time before we see imaging as a standard for PNE diagnosis.

  5. Thanks, Hannah. That was helpful. Good luck to you once again, and I'll look forward to hearing about your progress. Bill

  6. i pray that God just cradle you in His love during this time, and that He allows you a trust that is so child-like. I pray this doctor will be able to help you.

  7. Hi Hannah--
    I have PN and SIJD. I had surgery to release the nerve back in 2004. I consider the surgery to have pretty much saved my life, as it took away all of my symptoms but one. Unfortunately, that one remaining symptom (rectal pain) is the core of the problem. I have lived with it for 8 years now and it seriously sucks. I wish you the best in getting help from Dr. Hibner. If he were closer I would probably go see him myself. I know of someone he operated on that had previously had the surgery done by someone else. I have not heard whether it helped her, though. God Bless you and keep you safe, and may angels surround you and protect you.

  8. Hi Christ,

    Thanks for your comment. That's so encouraging that you feel the decompression saved your life! I am so sorry you are still dealing with the rectal pain. What symptoms do you feel the surgery took away? Do you still have SIJD problems or do you feel they were a result of the nerve entrapment? I am not close to Dr. Hibner, but I felt like he was the best doctor to handle my case. I know he does a lot of "re-do" surgeries. You should get on his waiting list (it took me 7 months to get an appointment!). May God bless you as well and may He give you the grace to sustain you through this life.

  9. Hey guys! I'm in a similar position. 3 years ago when I had my beautiful baby girl, I had significant damage and blood loss. After about a year of testing it was determined that I have pudendal neuralgia. I have had: The CT guided injections, botox injections,a vaginal skin graft replacement, one surgery to decompress, an attempted spinal implant, and radio-frequency nerve ablation. I went to a doctor in MD who is phenomenal, he really is. I went to a doctor in Philadelphia. nothing has yet worked. Who, honestly, in your opinion should I see next? Plane rides are extraordinarily uncomfortable, but if it is worth it--I will go. This is just an embarrassing problem, too. I wish it was my arm or something. I'm just reaching out if anyone has any clue. Thank you all so much. I'll keep you in my prayers, because God knows, how devastating this is in every aspect of life.

    1. Can you tell me the name of the doctor that you saw in Maryland?

    2. Hi, I'm not sure Kate will see this. I'm not sure who her specific doctor was in MD, but I know on there is a Dr. marvel in Baltimore who treats PN. Check out the above website for more info.

  10. Hi Kate,

    Sorry to hear of your pain. If you'd like to discuss your symptoms and treatment options more please email me at purposeofpain (at) gmail (dot) com Thank you for the prayers!

  11. I was wondering how your appointment went with Dr Hibner?
    I recently found him online and will be scheduling an appointment which is a few month out and I will have to travel from out of state. Did you have the surgery? If yes how was it? Thanks for any feedback.