recent surgery

[April]

Hi Everyone,

I had my left pudendal nerve decompression surgery with Dr. Hibner on Dec. 18, and it went well. Dr. Hibner and his fellow were “very excited” about the outcome. They said they found the nerve quickly and that it was “quite flattened” in the area between the two ligaments (sacrotuberous and sacrospinous) and that it became round after he removed the scar tissue from the nerve. They said it looked like it was compressed and that it was densely attached to the SS ligament. And he said that they were able to access a very large part of the nerve. He said that it helped them that I am tall and thin. I, of course, wanted to know if all of this meant I had a good chance of improving, and he said that he hasn’t been able to see any clear relationship between what he finds in surgery and how much people improve. But, he also said that he thought I would do really well. So I’m overjoyed that it went well, relieved that it appeared to be compressed, and hopeful that it will improve.

Two other notes—one for those who can sit without an increase in pain and one for those considering surgery:

(1) It was difficult to make the decision to do the surgery, in part because I could sit without an increase in pain, something very unusual for a pn patient. Hibner explained to me in September and again in my pre-surgery appointment in December that he has been finding that in a sub-group of patients—those wherein the SSL and the STL are very close together—that sitting actually relieves pain because it separates those ligaments a little bit. So, that helped me feel like surgery was the way to go, but it was still a relief to hear from him in the post-op report that it looked like it was, indeed, compressed between those ligaments. So, given what he is learning and my own case, I don’t think it makes sense to consider an increase in pain when sitting as an essential criterion of pne. If you have the other pne symptoms (which I did) but not this one, you could still have a compressed pudendal nerve.

(2) I am very glad that I did the surgery with Hibner. He seems to be refining the surgery in ways that improve the odds of success: (1) cutting (rather than splitting) the ST ligament for greater visualization, (2) using a z-cut on the ST ligament to elongate it and strengthen the stitching, (3) detaching the SS ligament from the ischial spine to create more space for the nerve (the SSL is so small that it just retracts to the sacrum after being detached), (4) wrapping the nerve in an amniotic membrane to promote healing, (5) putting a wound vac on the incision to promote healing and reduce the odds of infection, and (6) implanting a bupivacaine pump to numb the pudendal nerve and buttock for 5-10 days after surgery. It’s not clear to me (from a bit of comparison shopping) that the other surgeons are using these techniques (at least not all of them), and I think they all make a lot of sense.

April

[Patty]

I am so glad the surgery is over for you. I know what a huge decision it is. Although Dr Conway is one state over no surgery for me. The recovery is too long ( at least for me). You have nothing but healing and reduced pain to move into the next year. Here's hoping for a full recovery in 2019!!

[Ray P.]

Good Luck!

[chenonceau]

April, this is great ! I hope you'll recover quickly.

[April]

Many thanks, Chenonceau, Ray, and Patty!! My lidocaine pump is petering out, so the pain is starting to kick in. But, I'm on leave from work, so recovery is the main focus these days!

Best,
April

[April]

I have an unexpected symptom: I'm numb on part of my left labia and on the buttock area below and just behind the labia (maybe 3 inch diameter area on the buttock). At first I thought it was just residual numbness from the bupivacaine pump, but that ran out three days ago, so I don’t think that’s it. I just studied pelvic images trying to figure out what nerve this is, and it looks like the inferior cluneal nerve is a possibility, at least for the buttock area. I’m not too worried, because I know that nerves can go numb after an injury and come back in a year or two, and if this doesn’t come back, it doesn’t seem like it would present any problems. But, I am curious to find out if others who have had this surgery experienced this kind of numbness in related areas.

April

[Okiegirl]

April, this is great ! I hope you'll recover quickly.

How is your pain since surgery?

[janetm2]

Hi April,
Hope the pain calms down soon! I had left TG with Dr Marvel but no numbness so hoping this clears up for you as well.
Janet

[April]

Thanks, Janet. And thanks for sharing your experiences. I didn’t think the numbness was typical. I called his office to ask about it, and the doctor on hand (Hibner was not in) told the nurse to tell me it was nothing to worry about. If I still have it in a week or two, I may call back to get Hibner’s take on it.

Okiegirl, the pain is not bad at all, much lower than I expected. I had very little pain for the first few days because of the bupivacaine pump. Right now I’m on my three of my old meds (ones I took before the surgery): nucynta (just once a day), gabapentin, and amitriptyline. And I’m on two new ones: ibuprofen (every 8 hours) and 5 mg oxycodone (as needed). (I also took acetaminophen for the first week.) I also have belladonna and morphine (compounded) suppositories to reduce muscle spasms, but I've only used a few of those. I take as little of the oxycodone as possible, so, for example, today my last one was at 6:00 am (after which I went back to sleep). The most I’ve taken in a 24 period is 4 of these (spread out by at least 4 hours), and I think I’ve done that only twice. I supplement the meds with ice and a heating pad (one the pelvic floor). The ice gets the pain level to a 0 early in the day, but I know that ice reduces blood flow, so I’m limiting that as much as possible. The heating pad (on my pelvic floor) is almost as good. How is your pain these days? Do you feel like you are still recovering from your surgery?

April

[Violet M]

Hi April,

Sorry, this is a dreadfully late reply but I was interested to read about that little spot of numbness you described because I had something similar for awhile after my surgery. It never concerned me much because it was so minor compared to the pain I experienced before surgery but it slowly faded over the next year.

It's exciting to hear that Hibner is continuing to try to find ways to improve the odds of success. Thanks for reporting all of this.

Hope you are still improving!

Violet