Post PN Decompression Surgery - Temp Worsening Symptoms?

[chillijava]

hi
i have also just had left side pn decompression surgery, i am now 10 days out of surgery and at first some of the pain had gone completely but now the constant burning pain is back worse after a pee but low grade vulval burning pain all day unless i lay down of course. i am trying to keep positive, i was told not to expect miracles and that i might e only see a slight improvement, but i am desperate for some improvement i want my life back.
i was told it was very tight inside so i dont know if that means the nerve was trapped or not and whether that would have made a difference, i cannot take any kind of anti d's as i cannot tolerate them which means as far as the pain is concerned i have to tough it out, unlike a lot of you who get pain reduction with them, my husband says its early days and i do know that but i am sooooooooooo worried i have made the wrong decision to have surgery



andrea

[cconlan]

Eric,

That is crazy...I have a nerve issue in my feet too...neuropathy. I take Gabapentin and Hydroxyzine, supposed to help with both nerve issues. It seems to be a long road to recovery after PN surgery. I am improving, but it's not steady improvement each day...more like a roller coaster, up and down, but overall improving. No idea how I got all these nerve problems. Everyone jokes around saying I'm the healthiest person they know, yet I have all these issues. I guess everyone has to deal with some sort of health issues, and PNE is ours.

Andrea,

My nerve pain wasn't as bad immediately after surgery, I think due to numbness at the surgery site. But after about a couple weeks, the pain returned worse than before. I also thought I shouldn't have had surgery, but now I think it was the right choice. It's just depressing waiting for results. I wish there was some sort of rehab so it would be somewhat in my control. Laying around waiting drives me nuts.

[Violet M]

What happens to me is my entire left leg will become numb and it seems to get worse as the day progresses along. It does not seem to matter what my activity level is for that day. The only relief I get is when a take a muscle relaxant (currently Soma). I also take Lyrica but that is for another lingering nerve issue in my feet. My doctor and I have tried so many variations of meds to combat this and Soma is the only cure for me at the moment but I build up a tolerance to it quickly so that is short lived.

Eric, I wonder if you are having some issues with the piriformis being in spasm and pressing on the sciatic nerve. I had some of this pre and post surgery. What eventually helped more than anything else was using a TENS unit with electrodes placed to stimulate the piriformis muscle for at least 2 hours a day. Maybe you could have a good pelvic PT evaluate your piriformis for possible spasm.

I'm sorry for all of you going through the difficult post-op recovery period. It was a roller coaster for me also and I measured success by months/years, not by weeks or days.

Best,

Violet

[jheberc]

I had decompression surgery on the left side with Dr. Ansel in 2005. The pain increase quite a bit after surgery and gradually decreased until it stabilized to a nuisance level after 2 years. The first I really noticed an improvement was when I found that sitting no longer aggravated the pain and that was about 4-5 months after surgery. Hang in there, it should get better. I am still on 450mg daily doses of Lyrica which helps.

[janemail]

It's been a looooooong time but I would like to tell my story. I'll try not to keep it too long I had PN Decompression surgery in France 2 1/2 years ago. Dr. Bautrant did TIR surgery Dec., 2013. Following the surgery, he said it was entrapped and he was able to free the nerve and everything looked healthy. Right after, I felt really good. Was walking (slowly) with no burning or pain. After the flight home (Canada), the burning flared up again really bad and I was bed ridden. In the following months I did what I thought was right by getting up and trying to walk and going outside to walk a bit. (Might have gone too far?) I did the hot/cold water treatment and went to physio. I had ice on my vagina basically 24/7 due to burning and sitting was not an option. 9 months went by with very little progress, sometimes a glimmer of hope but, if I attempted too much, I felt like I was back where I started. Thanks heavens I had guidance from Catherine and Violet from this site who had also gone through the surgery. Catherine was my rock! I clung to her words for hope. I did not go back to work. The pain was still too strong. Just when things seemed like they were on the upswing a year later, I fell following a snowfall. My hands were full and I landed right on my butt. (not good!)
Of course, I panicked and went straight to physio. But the damage was done and flaring continued for a long time. From using ice all the time, my vagina was swollen and it was being interpreted that I had other problems. Not really, except that I was fully engulfed in menopause and it was swallowing me whole! No energy, crying, almost suicidal. Doctor here just kept prescribing pain killers, gabapentin (better for me than lyrica), and antidepressants (didn't take them, didn't want them). Finally after a year and a half, I went to a private Women's Clinic and sobbed my story out. The doctor there examined me and put me on bioidentical HRT. It turned out to be the right thing for me. My energy returned and I was getting some of myself back. She also put me on the following supplements: Orthoadapt (to help my adrenals get strong again), vit. B complex, kelp & selenium (to help thyroid), omega 3, Emergenc- C, GI repair nutrients and Elemental Magnesium (which helps considerably if you are backed up from medication). I also take CQ10 & acetyl L Carnitine. Bottom line here , it's been 2 1/2 years and I'm off ice, except at bedtime. I use tens machine, am walking almost everyday, swimming twice a week (the most I do is 16 laps (just started swimming a few months ago), feel happy (wow, never thought I'd use that word again!) and hopeful.
I'm looking into going back to work. I still can't sit for too long. I have one of those bubble seats that Catherine recommended and use it for driving. If you are dealing with this horrible thing, don't despair. Desperation was my main man for many many months. Somehow a corner was turned and the pain left the vaginal area and moved to under the right butt cheek. But it is waaaaaaaay better and more tolerable than what it was. I'm learning I can't go back and ruminating the past is not going to help anybody but I can go forward and greet the day with a smile and appreciate what I have today:) I know I read some of the other stories and would tend to panic because I wasn't getting better according to their timeline. This is an individual thing and your body is letting you know how to treat it. Be patient and healing WILL happen:)

[Violet M]

Jane, sounds like you have been down a rough road but I'm so glad to hear you are doing better and hopefully things will continue to improve. Thanks for the update -- it's good to hear from you.

Take care,

Violet