1mo 1 day post op- PNE surgery questions! in Pudendal Decompression Surgery

Hey guys! I have made my blog public to a lot more PN suffers via failbook. I hope to reach a wider audience. So what I want to know from my new viewers are… what questions do you have for me about pudendal nerve decompression surgery? I will post some of the common ones that I have received here.

Disclaimer: If you don’t know the anatomical parts I am referring to in the pelvis, please check out my earlier entry entitled “What is PNE”

1) Who did your surgery? How was surgery done?
Dr. Michael Hibner in Phoenix, AZ. The surgery was left sided transgluteal. He sevors the sacrotuberous ligament and repairs it when hes done..This allows him the best visualization of the nerve and also he can check for scarring/ entrapments. He cut the sacrospinous ligament beacause I had a second entrapment at the alclock canal. This gives the nerve more room to glide. An internal pain pump is placed and stem cells are injected.

2) How long were you under the knife/ in the hospital for? For unilateral surgery normally someone is under for 3-3.5 hours. I was under for 4 hours and it took me 2 hours to get right enough to talk to anyone. I have heard that for BILATERAL surgery people are under anywhere from 5-6 hours. =-0

3) What is the recovery like? Long and brutal! This surgery was way way more that I expected in terms of recovery. It is super invasive. Expect to get worse before you get better and have a long term plan in terms of work and housing when it comes to recovery. Make sure you have someone who is dedicated to taking care of you. You will not want to move a whole lot until you are a month or so healed. I would plan on taking at least 6 weeks off work and if you have to return to work do it remotely or better yet RE THINK YOUR JOB before having this surgery!! You will not begin to notice significant improvement until about 6 months to a year post op. THIS IS A LONG HAUL JOURNEY! You WILL NOT WANT TO GO ON...... But keep going.

4) What is mobility like post op? It took me 2 days to be able to walk again. You will have little to no energy to walk for the first week or so but everybody is different. I relied on a walker for a few weeks post op. YOU CANNOT BEND DOWN OR SIT unless you are on the toilet. You will have to RE LEARN how to walk up stairs and TAKE IT VERY VERY SLOW! YOU cannot take a bath. You should obviously try to avoid laying on the affected side. And if you had bilateral surgery lay on your stomach as much as possible.

5) What are your symptoms post op? Everyone is different. Some people notice smaller subtle changes post op, fairly early on. I am not one of those lucky ones. Me personally I had increased sciatic nerve issues as well as increased centralized sensitization on the left. Left Leg sensations & bad butt pain (mostly burning and surgical pain there). The entire distribution of the PN was BOTH numb more deep AND had increased nerve pain. I had a lot of muscle spasms and a lot in the leg. The allodynia has increased. Most of my issues pre op were amplified and I am still waiting to see improvement. I am on pain pills, muscle relaxors, gabapentin (for the central nervous system) and stool softners.

6) How did you manage to fly home? They say you can fly home after a week but I have no idea how I would have done that. That’s because Dr. Hibner places an internal pain pump which numbs the area he worked on for 6 days post op. If the area was still numb it would have permitted me to sit. Many people tell the flight attendants (show them a note) that you will need to stand as much as possible on the flight because of recent surgery. Travel with a donut cushion. I got “lucky” in that we had to fly back home in the middle of the pandemic so there were a total of 35 people on the flight. I had 3 seats to myself so I was able to lay down. You will also need to be wheeled around the airport as walking long distances is not in the cards.

7) How long did you stay in Arizona? I made the decision to stay in Arizona for a month post op. We paid for an Air BNB. Some people choose to fly home after a week when their pain pump is still working. Depending on the Dr. you have, they may or may not place a pain pump. You will need to ask the specific dr doing the surgery what is typical for their patients. This also depends a lot on pain management with that dr post op.

8) How long did you suffer from PN before surgery? My PN symptoms were urethral, anal sphyncter, and SOMETIMES vulvar episodes that happened post voiding as early as age 6. They were episodic and manageable, until 2013. In 2013 they took a turn into the UNMANAGEABLE category after using a vibrator. So about 6-7 years of life changing pain. I was in denial that I actually had PNE since its so uncommon and I didnt think I would ever get good treatment so I put off surgery. I was also terrified of getting worse. The pain was OVERALL gradually getting worse over the 6 years which is what finally made me push toward surgery.

9) What were your symptoms pre op and what treatments did you try? A two part question. My symptoms were stabbing, stinging, buring, electric shock, and allodynia in the entire area of the Pudendal nerve on my left side. I had left sided centralized sensitization. Pain worse with sitting. Pain worse after using the bathroom. Sometimes pain with walking (incited BOTH by muscles AND the rubbing on the skin due to allodynia)…Extremely limited sexual abilities due to the discomfort. (Mostly after sexual activity). Sometimes inability to tolerate sexual penetration. Bladder area pain that would present as burning and urinary urgency feelings even when my bladder was empty. At times urinary incontinence. Digestive issues. Incomplete evacuation, constipation, and abdominal pain. The pain had me not wanting to move or be out in public.

Treatments I tried: A NUMBER of imaging tests to RULE THINGS OUT, Pelvic PT for YEARS, diet changes for YEARS, accupuncture, chiropractic, pelvic realignment, nerve blocks, botox muscle injections to the pelvic floor.

10) When can you go back to physical therapy? My Dr. Says to return 6 weeks post op but since COVID wants to ruin everyones lives I most likely wont return until June ish.

11) What were your surgical findings? Entrapments at the sacrotuberous and sacrospinous ligaments and scar tissue down the entire length of the left pudendal. Nerve functionality greatly improved post decompression. This is classic type II PNE. There is no way to know if you have a nerve entrapment until you get cut open. MRN is a CLOSE indicator (this is an MRI for nerves and ligaments) but some doctors do not credit this imaging. Only a certain amount of technicians are qualified to read. THere are technologies that are being developed in Europe I think like some kind of doppler imaging that can estimate the points of entrapments in the pelvis.

Last updated April 13, 2020