Sitting after PNE Surgery- What were you advised?

[JeanieC]

I know we have a number of people writing about surgery recently and I would like to know what your surgeons told you about sitting. Mine gave me specific advice about the first month but after that it was really just to do whatever you were able to, pacing yourself and of course avoiding anything that increases pain. My pain, 2 and a half months after surgery, is fairly constant, sitting and standing are painful, lying down with an ice pack and pain meds is by far my best position. This is really the same as before surgery. Of course I do not want to spend the rest of my life this way and I like to get out as much as possible. People warn me about sitting but I really don't know how far to go with this.

For example, I have 2 invitations to go out for dinner this weekend, one to a restaurant and one to a home. I am planning to go to the one at home and decline the restaurant. I will take my cushion of course and a supply of ice packs. Do you think I am being foolish or doing something that will stop my nerve from healing now that it is free and is back in the groove where it is supposed to be? I thought I would not worry about sitting after surgery but I find that I do worry as I don't want to do anything that will lessen my chance of recovery.

I think we have at least 6 surgeons represented by their patients on this board and I would appreciate very much hearing what you were told by them about sitting post op. Or just hearing what you do yourself would help me.

Thanks,
Jeanie

[Celeste]

I got the same advice as you did, Jeanie.

I would say that it's important to try to do the things you can. By that I mean, don't spend the recovery time just waiting for relief, do as much as you can in the interim. I think your instincts about the two invitations were good. In a restaurant it's impossible to excuse yourself for long, and sometimes a restaurant meal stretches on for a long time. In a home can visit with guests in the kitchen or living room, and if it's a close friend they would probably be very understanding about you using a couch or recliner in order to be more comfortable and still socialize.

I think you have to let the pain be your guide as to how long you can stand to sit. (That sounds crazy, I know!). If it absolutely makes your pain worse, then I think you have to put limits on it. But if it just makes you notice the existing levels more, then it's more of a gray area to me. Don't know if that makes sense...I may be rambling.

If it's any consolation, I've read on forums that the people with slower responses to the surgery may not really see any results at all before 10 months, and that the 10 month mark may find a lot of people in a pain flare. It's still quite early for you even though I'm certain it feels like it's been a long and difficult time.

In any case, I always read your posts wherever I find them and keep you in my thoughts that you will start to feel improvement. I hope you have some enjoyable time with your friends this weekend; good company is good medicine.

Hugs,
Celeste

[A's Mommy]

Jeanie,

I'm sorry if you've answered this already somewhere else:

Where did the doctor find your nerve entrapped??? Did you have bilateral pain before the surgery even though you only had one side operated on?

Thanks!

A's Mommy

[Violet M]

Jeannie, theoretically you should be able to sit when the surgeon tells you it's OK because the nerve is no longer supposed to be entrapped after surgery. But in reality it's not quite that simple. I think often we PNE'ers have more going on than just a simple entrapment at the ischial spine and alcock's canal. There are a few lucky people who are cured soon after these areas are decompressed but for many of us the situation is more complex and we have to continue to be careful even after surgery to release the nerves.

I can sit for much longer than I could before surgery but even 6 years post-op I still have to be careful because if I start sitting for 10 hours a day everyday the pain starts to creep in again and then I have to be extra careful for several days or weeks. I think you really just have to listen to your body and if sitting starts to cause that burning feeling again, stop for the time being and change positions. Like Celeste said, you are still very early in the recovery stage and hopefully things will get better for you -- but it will most likely happen slowly and it takes a lot of patience. Good luck!

[JeanieC]

Thanks for the replies, Celeste, A's Mommy, and Violet.

Celeste: I'm glad you mentioned the idea of new vs existing pain. I certainly only have the same pain, it does vary in intensity but can do this whether I sit or not. If only it was clear what makes it worse I could avoid it. I read your posts too in fact I am trying to work my way through all of them as I have learned so much.

A's Mommy: My entrapment was between the SS and ST ligament and they are now "windowed". I did have a small amount of pain on my right side but since surgery I only notice my left side pain. I am following your case with interest as I spent many years in maternity nursing. Best wishes for your upcoming surgery.

Violet: I tend to think you are right that there may be more going on with some of us. A suspicious number of us have L5-S1 disc degeneration I have noticed although technically this is too high to influence the pudendal nerve. Thanks for all you do on this forum.

Patients of Drs Conway, Filler, Hibner, Robert, Shobieri and any I have missed, were you given any sitting advice that might be helpful to me?

[Stephanie P]

Hi Jeanie,

Professor Robert did my surgery. He said that I could sit, post surgery, in accordance with pain. His actual words were "Pain is the leader." I experimented with sitting from time to time (donut cushions, tilting forward in the chair, cushions etc) but although there was no increased pain at the time of sitting, each attempt resulted in a severe, delayed flare. Six years later I'm still waiting for relief (at the time of surgery my nerve was found to have been markedly compromised on both sides for some time) and I'm still not sitting!

All the very best for your recovery, Stephanie

[JeanieC]

Hi Stephanie,

Thanks for the good wishes. I am very sorry that you are still not able to sit and not getting relief from pain. I think probably all the doctors can really tell us is to let pain be our guide for activity. It does make it hard to do much at all though when the pain is present both sitting and standing.

I read a post by you that said you are writing about chronic pain related to PNE for your doctoral degree. I hope there will be a way for us to see this when it is finished. I have read the article about your trip to Nantes published in Sport 33 and found it fascinating. I think I happened to come across it while searching for information on Prof Robert.

Best Wishes,
Jeanie

[Stephanie P]

Yes, Jeannie, I hope to have the dissertation - the language of pain - published once it's finished. And yes, PNE will be very much to the fore! I'm just completing the first year, and have two more to go. The article Sport 33 published online in about 2005 was not the complete article, but I'm glad you enjoyed what was there!
Take care, Stephanie

[ezer]

Dr.Filler's advise was to resume your daily life but to not overdo anything and that included sitting. His main advise was to not lay in bed all day but be reasonably active. He did not recommend PT right after surgery though.

[JeanieC]

Thanks for the reply, Ezer. I am finding it works out best just to change positions frequently and avoid sitting as much as possible.