Health Organization for Pudendal Education

Thanks. To his credit, Dr. Dellon replied very quickly to my e-mail. He indicated that since I have come this far there shouldn't be any scar tissue forming unless I re-injure the nerve. (Which I haven't.) Hopefully the nerve is just more sensitive as it continues to regenerate. Thanks for the support.

I am sorry for your relapse and I hope it is temporary seeing your ongoing progress. I commend you for contacting Dr.Dellon and I think it is imperative for all of us that had dorsal nerve surgery to contact and give feedback to our surgeons. Our post surgery stories are eerily similar.

Thanks, Ezer. I appreciate it. I had seen your name before but I didn't recall that you had had surgery with Dr. Dellon. I looked through some of your old posts to refresh my recollection. Boy, that Dr. Dellon thread is pretty darn depressing. My thoughts as of now:

1. One area where we could use improvement is the terminology that doctors use to describe the effectiveness of their treatments. After my surgery, Dr. Dellon said that I should have an "excellent" result. To me, an "excellent" result would be 90% improvement or better. When I came out of surgery, I envisioned being virtually pain free, being able to sit without a cushion, returning to physical activity, etc. I'm still a long way from that. I'm pleased with my progress so far, but I was hoping (and still am hoping) for a lot more. Now that I've looked through some older posts, Dr. Dellon like other doctors seems to use a definition of "excellent" which might be at odds with the average patient's expectations. I don't expect doctors to be miracle workers, but if they are talking people into having risky surgery at great financial cost, there should be more transparency/better understanding.

2. At this point I am still very glad that I had the surgery. As I reported earlier, I felt an immediate improvement in blood flow so the fibrotic tissue was certainly a problem as far as blood flow was concerned. I also experienced a lot of pain when bending, stretching, squatting, etc., and I'm convinced that removing the fibrotic tissue removed that entrapment. I experience far less pain than I used to. So in that sense removing the fibrotic tissue was the right thing to do.

3. I'm still off of medication, which is a great thing.

4. I'm thinking/hoping that some of the discomfort that I experience is nerve regeneration and/or the nerve getting used to its new surroundings. I see posts that say that by this time (nearly 7 months out) the nerve regeneration should be over. I certainly hope not.

5. I'm going to start physical therapy again. It didn't yield much benefit before surgery, but if the fibrotic tissue was indeed the problem, then it would make sense that the PT wouldn't have any long term effect. I'm hoping that nerve gliding/flossing techniques might help. Who knows but it's worth a try IMHO.

6. This sucks. (Not that we don't know.)

7. To all the bikers out there, have you (like I) wondered why we have so many warning labels on every consumer product under the sun (hair dryers, lawn mowers, video games, etc.) but we have no warnings whatsoever with bicycles and conventional bike saddles? I've second-guessed my decisions oh so any times over the years, and I wish that I had been better educated about the subject, but reading about biking etc. I always thought that what it caused was ED and I always thought that was a blood flow issue. I never had any idea of the importance of the pudendal nerve and its course through the perineum, nor that I was risking permanent nerve damage every time that I got on a bike. I have a fair amount of anger at myself, but I also have a fair amount of anger for the cycle club that taught me all about how to spend hours at a time on a bike but never once to learn about this important part of human anatomy. Argh. I could go on for a while and I know I'm venting but sometimes you just have to do that. And my family and loved ones only deserve to put up with so much.

I wouldn't beat yourself up about this too much Bikergeorge. I'll bet that even if you did have a vague inkling of a connection and loved the sport it would then be an 'it won't happen to me' thing. Even if that is not the case this IS the place to vent . We really do have a fair bit to VENT!!! about
Take care,
Helen

Biker George,
I am with you on the description of success and improvement being different from doctor and patient. I had another disconnect with not understanding supposedly I should go back to work in 4 week.s but recovery is a year and be patient. I am almost to the year and can sit longer than before surgery but have issues bending, squatting and lifting over 2 pounds? Then of course with the cut ligament certainly no twisting especially combined with lifting! I am grateful I am not 24/7 at pain level 10 in bed but did and like you still hope more recovery is on the way. Not sure I had a choice to avoid the excessive sitting since it was my way to deal with chronic foot pain but maybe if I had known I could have split the time better, anything to avoid this condition. That is in the past and we can vent and still go forward to better days ahead.
Ohh yeah wheen I got bunions at age 21 the doctor said with the sitting I would only have to worry about "secretarial spread" he never mentioned PNE!
Take Care,
Janet

Hey George, I got PNE from exercising too so I know the feeling -- wishing I could go back and relive that part of my life and do things differently. The amazing thing is my husband and son are both huge cycling fans and even though they've seen everything I went through I cannot get them to stop! We tend to have a sense of invincibility until it happens to us.

Well, I'd love to say you are going through a temporary flare-up phase but it's impossible to know for sure. We're all here behind the scenes hoping for the best possible outcome for you - one that you can call excellent in the end.

Violet

Had a tough day again today. Am going back on Cymbalta (30 mg) and Gabapentin. Hopefully only temporarily on the latter. Discomfort level increasing without a corresponding explanation. (Although I did play roadie of sorts for a large musical gig yesterday, so maybe that was the reason.) I've been suicidal these last couple of days. It's amazing how perception and hope can change your outlook. I'm still better than I was before the surgery, but the backsliding can completely change your perspective, cause you to abandon hope etc. Luckily my family is really supportive and so is my girlfriend. I told my sister and my girlfriend about my mental state and they are being incredibly supportive. I am going to start going to a counselor again. I don't mean to bring anybody down but I wanted to post the latest update.

I'm really sorry to hear about your pain levels increasing, George. I think you are smart to go back on the medication for a bit and hopefully things will calm down again soon. Having a supportive family can make a huge difference in giving you the courage to keep fighting. I'm so glad you have that support.

Take care,

Violet

Think the cymbalta + is a good idea. I can understand the predicament; even tho' you are slightly better than before surgery, the hope you had for your recovery was boundless and any set backs must be soul destroying.
I suppose the phrase 'early days', will be used time and time again but then from all accounts, it's true!
So glad you have good people around you BG
Also hope things calm soon,
take care,
Helen

Thanks, Helen. I appreciate it very very much. BG.