Health Organization for Pudendal Education

I just wanted to post a quick progress update. I had dorsal nerve decompression with Dr. Dellon at the end of September. Today marks 23 weeks since surgery. Progress continues. Prior to surgery I had been taking 4800 mg of Gabapentin per day and 60 mg of Cymbalta. As of yesterday I have stepped my Gabapentin down to 300 mg per day and my Cymbalta down to 30 mg per day. I still observe significant activity restrictions and I try to limit my sitting as much as possible. (Thank goodness I can either stand at work or recline on a couch.) Another hopeful sign is that I was able to do some light leg lifting in the gym the other day without any real discomfort. I am hopeful that I will be able to get my medications down to zero in the next month or two and I am still hoping for a full recovery. More to come and best of luck to all of those suffering with PNE.

Biker George,
Great news. It is always good to hear a positive surgery outcome, lowering drugs,too. Thanks for posting and keep heading in that direction!
Janet

A quick update--I have now zeroed out all of my medication. To me that is a very good sign. I am still observing activity restrictions -- minimizing sitting, no strenuous exercise, etc. -- but things do seem to be getting better so I'm sticking with my current course. Discomfort is slowly decreasing. I also went skiing this past weekend and it went very well. I used my donut cushion on the longer ski lifts on day one, but on the short lifts on day one -- and on all lifts on day two -- I went without the donut cushion and I did OK! My 4 hour flights to and from Colorado also were no problem with the donut cushion. So things are looking up and I am hopeful that I can get even better!

I will continue to post updates as warranted by the circumstances. Thanks to all for your support here (and at tipna.org), and best of luck to all of you fighting this terrible affliction.

Biker George I am so happy for you! My goal is to someday be off all meds too! I know with faith and persistence I will be!

God bless
A M

Great news George. I would say that not requiring any medication and being able to ski for an entire weekend with minimal ill effects is a VERY good outcome after just 6 months or so!

I am about 6 months post-dorsal nerve decompression surgery too, but there is no way I would be able to ski even just one run without having to curl into a ball for the next month. However, I have been able to pretty much stop all meds and surf again a few times a week, with only some discomfort during and afterwards. Hopefully I continue to get good results like yourself in time also.

Cheers

Nathan

Nathan that is great that you can surf again!!!

How's your sitting pain, sex, etc?

And you are a daddy now right! Congratulations to you and your family

God bless,

Jessica

It's great to hear such encouraging news from both of you. Keep going in the right direction guy's.
Take care,
Helen

A's Mommy wrote:And you are a daddy now right! Congratulations to you and your family.
How's your sitting pain, sex, etc?

Thanks Jessica. Yes, we now have a perfect little boy, about 5 weeks old (born 3 weeks early). So I have been well distracted from this stupid nerve in the meantime.

My sitting pain is about the same as before. I can sit down for general things like eating a meal, driving down the street etc. Its when it starts hitting the hour mark, or so, where I start getting uncomfortable. Generally, I would have to sit on a very uncomfortable chair for a relatively long time to cause any sustained nerve pain however, which is ok I guess. Due to the current situation, sex has been off the cards for a while, as I am sure you could imagine . We have been able to slowly try again in the past few days, and that has been ok for me too. Slight discomfort afterwards, but no nerve 'pain'.
I still have to be very careful with the surfing. I can't wear a wetsuit, when I tried the compression on my groin left me sore for the couple of days, and I have to be very mindful of how long I am in the water for, as it seems easy to overdo it. It is just great to be able to do something fun again though, even if I can't be so carefree about it anymore!

I stopped taking the lyrica about a 3 weeks ago, because I was pretty much sick of it, and I was feeling less pain periods. Pain has 'slightly' increased with no med, but nothing to make me go back on it again, unless I get a sustained nerve flare.

Another update. I've had a rough past couple of days. In particular, I've experienced increasing discomfort without having performed activities that might explain it. Accordingly, I am worried about backsliding. The other day I swear I wanted to go jump off a bridge. As you guys know, dealing with these problems can be horrible. I just e-mailed Dr. Dellon to ask how many patients have seen improvements at first followed by a return of symptoms. I sure hope it isn't the case for me but I think I've seen messages on this board talking about temporary improvements that were followed by a return of symptoms. Maybe I'm just experiencing the discomfort because of nerve regeneration but it is kind of hard to believe and this can be very worrisome.

It must be so difficult having 'the op' and waiting for any improvements, only to go back a few stages. I hope this is just a temporary blip. All you can do is follow Dr Dellon's instructions. I'm sure things will calm down again for you and hopefully very soon. Nerves are just SO weird!!
Take care,
Helen