Health Organization for Pudendal Education

An update. On 12/30 I had re-do left PN decompression by Dr. Hibner. He removed a LOT of scar tissue. At the start of surgery it took 25 mA of intraoperative nerve stim to get the left PN to respond; after scarring was cleaned out before wound closure) it only took 1.5 mA. Surgery was 3 hours, ending 10:30 a.m.

Ketamine was supposed to start in the OR but Dr. Sparlin was called away on an emergency. Between that and delays in getting me up to the room I'd call home the next 5 days, ketamine wasn't started until 3 p.m. I was getting minimal IV or oral pain meds so they could determine baseline pain level & locations before starting ketamine. I come out of anesthesia quickly, and over those next 5+ hours could clearly determine what surgery had accomplished. Preop: 1) daily deep rectal pain at 3-6/10 (worse after BMs, especially multiple in a short period of time); 2) 24/7 sharp left S2-3 pain at 5-9/10 which began suddenly in July 2012 after 7 months of sacral nerve stimulator (no history of that since PN began in 1999). That butcher-knife in the sacrum was often worse than the long-term vaginal & labial stuff because it was always there, but immediately worse with sitting or lying down for more than 2 minutes; 3) left vaginal wall pain rated 4-9/10 (usually 6-8/10) which progressively worsened after injury in 1999; 70+ percent improvement the first 1+ after my 12/2007 surgery, slowly increasing back to preop levels since 2008; 4) 4+ years of progressive constant left vulvodynia/labial soreness/swelling with frequent burning rated 3-9/10. For years I couldn't tolerate even very loose underwear (only wore it if a pad was needed for bleeding or so I didn't ruin baggy sweatpants when lidocaine ointment or a suppository was needed; 5) since July 2012 a sudden increase in BMs, from 2-3 per day to 6-12 per day, several days per week up to 10 within 2-3 hours in the morning, and often 1 in the middle of the night (no history of that); 6) Episodes of left labial hyperarousal which began 6 months postop in 2008 (no history preop) and would last for 4-10 weeks per episode, occurring 1-4 days per week.

Completely gone[/b][/b] since surgery 12/30 (before starting ketamine): Deep rectal pain; left vulvodynia/labial swelling/pain/burning; frequent BMs due to incompletel voiding, now a normal person at 2-3 per day. Greatly improved: left vaginal wall pain, now 2-4/10 daily (and sometimes I'd even say 1/10. Had a flare 2 days ago at 5/10 but the S2 was mild that day. Yesterday the vag wall was back to 2-3 and the S2 was 4-5. No hyperarousal since late Sept. so don't know the status of that. Because of the many hours between surgery and ketamine, obviously surgery was the main factor in this huge instant pain reduction. How much ketamine helped in re-setting the brain-pain response is unknown. I will post about ketamine in the near future. The doctor changed my pain meds from how my pain doc prescribes them, but since I arrived at where I'm staying the day after release from hospital, I'm taking 2-3 Oxycodone 15 mg and 2-3 Zanaflex 4 mg per day, usually in 1/2 tab doses as needed. Needed 1-2 Atarax per day until 2 days ago because of severe itching that started 2 days postop from severe adhesive allergies, also to help slow down my brain & relax because ketamine makes it run at 200 mph. Preop was taking 4 Oxy per day and 5-6 Zanaflex, plus using lots of lidocaine on the vulva and 2-3 Baclofen/Valium rectal/vaginal suppositories per day; haven't needed either of these since surgery.

I'm supposed to be keeping calm and limiting social interaction to help the ketamine continue its work, and can tell there's still some in my system because of how my thinking is functioning. Too much work to calculate the math for overall % of improvement, but since 3 areas are completely cured and 2 are 50-75% improved (PGAD unknown because of episodic nature), I'm SO MUCH BETTER and SO HAPPY!!! Thank you Dr. Hibner.

Will not be responding to PMs or on the forum at all until after I get back home in 2 weeks, so don't be offended if I don't respond. I'm enjoying time with my in-laws (REALLY), relaxing, knitting a little, meditating, walking as much as my Morton's neuroma foot pain permits, going along on brief errands to get things I need, have completely cared for myself since 1/5/13, helping with cooking, using my grabber so I don't have to ask for help.

Excellent news and inspiration for all. Enjoy and catch you when you get home.

So happy for you! I'd appreciate hearing about your ketamine experience because I might be undergoing the same.

Emily B.

Yeah Dr. Hibner! This is amazing, thank you for sharing your story. Hugs to you for slow and steady healing, and lasting improvement!

Debbie

Quilter, I'm so glad to hear things are going well for you so far. You've been through an awful lot and I hope this will finally be the answer for you. Please take it easy and have a good trip home. Looking forward to hearing more good news from you.

Violet

Hi quilter,

lovely reading your post on improvement....may I ask about the labial swelling which I also get ....what did your doctors tell you about it? is the pudendal nerve causing this ????

Dear MaryJane,

My understanding is that the labial swelling is caused by PN nerve inflammation and is part of the vulvodynia component. In terms of pain I usually couldn't tell the difference between when the labia was swollen/red and it wasn't - felt the same, though maybe the severity was worse. Sometimes I'd tell my PT it felt inflamed and she'd either agree or say it was normal and matched the right side. This description is past tense, before my recent re-do left PN decompression: Even when it didn't look swollen or red the left labia always felt puffy and raw, intolerant of even very loose underwear or pantyliners/pads. It hurt to walk because of friction of the tissue or just plain movement of the related muscles due to PN entrapment. The right labia has always been normal. Also, after 1 or more BMs the labia started burning, and the days when I had 6-12 BMs in 2-3 hours were horrible. I lived on drugs, ice and lidocaine and had difficulty leaving the house - you can't walk into businesses with ice on your crotch. Some days even when frequent BMs weren't an issue, I described the pain in the labia as if it had been sanded and had acid poured on it; it penetrated several layers of tissue and lidocaine & ice didn't even begin to help. Just had to take the max. amount of drugs to help my brain settle down and help calm the deep rectal and/or pelvic floor muscle spasms.

Maybe others have a more anatomical explanation to answer your question.

Quilter, how are you doing since surgery and the 5 day ketamine? Did they help? Might be too early to tell about the surgery but you would know if the ketamine did.

I'm still doing the same as my Jan 13 post, despite 3 days reclining in a car with pillows to get home last week: 1 day from Albuquerque to Phoenix, Dr. Hibner the next morning and a drive to Ventura CA for the night, then home to Monterey Bay. My MIL told me we could shorten the trips anytime and stay at different locations than planned, but I did fine pain-wise by stopping every 1-1/2 to 2 hours for bathroom/walking breaks. Being back at my house on top of a hill is more of a challenge, but I'm not going down the hill every day and going carefully when I need to. My driveway is halfway down, but after a 1-1/2 mile drive to the grocery store yesterday I won't be doing that again for another 1-2 weeks except as a passenger. (Was feeling a little housebound as my house is 1/3 the size of my in-law's, and being on a hilly property not conducive to walking much outside unless I'm down on the flat half of our court. Our entire 2-mile canyon road is sloped to various degrees of steepness; my driveway is a ski slope). Even with pillows the incision is sore. I recall that after my first PN surgery it took many more weeks to feel comfortable putting any pressure on it. My incision is about 4" long, horizontal, across the base of the butt cheek.

Still can't judge how much ketamine helped; Dr. H asked me that question last week. I truly believe, based on the delay starting it postop and the time to get into the bloodstream, that the surgery was the main factor in my remarkable improvement. Hopefully ketamine has helped re-configure the brain-pain response. I'm definitely sleeping better, and without Ambien. Based on behavioral things my family and I noticed ketamine was still having a strong effect on my brain at 2+ weeks postop, though gradually decreasing. We'll see.

Dear quilter,

Thank you for elaborate details of your operation recovery and operation itself.
I wish you speedy and full recovery and satisfying life after procedure.

Helen.