Do I suffer enough?!!

[stephanies]

Thank you, RJR. I will get in touch with Dr. Fritz's office and see if I can get an appointment. I am not interested in injections at this time, but I would like a new MRI to see if it can provide some additional information. I appreciate all the details you provided. My best to you,

Stephanies

[jaxi123]

What is the cause of your ongoing pain and what is your treatment plan?

[stephanies]

Jaxi,

I am not sure if your question was addressed to me, Holly, or Bob. As for me, I do not know the cause of my pain. I really have no treatment plan. As I mentioned above, I would like an updated pelvic MRI to see if it gives any insight or new information. How have you been doing?

Sincerely,
Stephanies

[egley]

Hi Holly,

You have gotten a lot of good advice - much more than I have to offer.
I did want to add my experience with the neuro-stim.

I had one implanted a while ago (my memory has been very bad lately - I think it's the Lyrica), I think a bit over a year ago.

They are sticking things in your spinal column - very risky in my experience. At the time, I didn't give this a thought.
I have never had a poor surgical outcome before this (and I've had quite a few), so I never even thought about the seriousness of the procedure.

At any rate, my surgeon is to be avoided at all costs.
I had to go to the emergency room the day after the procedure. I could not sleep at all because of the pain. I did get a call back from the surgeon (at 2AM, so I was pleasantly surprised about his concern), but he simply told me to "take the pain pills." I had already taken a few and usually that is enough to put me out regardless of the surgery, so I was reluctant to take more. I took a few more and managed to fall asleep, thinking well they did mess around with my spine so this pain is probably normal. Next day I could not walk. I crawled everywhere. Sometime in the afternoon, I began to think 'this is not good', so my son took me to the ER. The only posture to avoid pain was on my left side.

To make a long story short, the surgeon showed his face for a few minutes and gave me a diagnosis of constipation.
After 3 days they sent me home. My pain was still bad but less than when I first came in.
I was thinking that this was spinal surgery, so it probably will hurt for a while.
I was having spasms in my legs even when the stim was off - same muscles as what the neuro-stim affected.

These spasms continued and were quite bothersome. It was a bit like a normal muscle spasm, but without the pain.
It made it difficult to walk. I didn't have sufficient control over the muscles to walk normally.
BTW, this is also true when you have the stim on. You have less control over the muscles affected by the neuro-stim when it is on.

I went to Henderson at Stanford (per Medtronic recommendation).
First thing he asked was if the surgeon had done an x-ray to determine if the neuro stim was placed correctly.
My first clue that the surgeon I had was the wrong one. He never did this.
My anger begins to flare up when I think of this. The idiot did not perform a very simple x-ray.
The guy is so full of himself, he never considers that he may have made a mistake.
"It's constipation! You'll be fine" he tells me, as I limp out of the hospital.

At any rate, I had the nuero-stim removed by Henderson.
I still have the muscle spasms from the surgery.
I now have a pain pump; originally intended to help with the PNE, but it actually removes the muscle spasms in my legs better than any PNE relief. Yeahhhh!
I have no more muscle spasms. Prialt removed them entirely (along with it came some brain fog).

I had pretty much ruled out surgery because of all the bad publicity I have been seeing on these forums.
But RJR's success has given me a ray of hope.

I am now on disability and am gearing up to make one more attack on this PNE.
I'm tired of the brain fog from all the med's I'm taking.
I'm tired of hauling my ice packs everywhere I go - ice is the only way I can sit at all, med's or no med's.

Thanks everyone for your sharing.

All the best!
Skip

[Holly]

RJR - your doctors sound amazing. I am soon to find out what the top London doctors can suggest but I fear they may not be able to help so well with diagnosis. I may be doing them an injustice though, I shall find out soon. Your story does give hope, thank you. It is great to read of positive outcomes, they seem to be in the minority...

Egley - I'm horrified by your experience. I would like to think that you had been extremely unlucky but it definitely shows that one needs to take all intervention seriously. Like you, until now, I have always been fixed by doctors and their actions! I have had a few operations in the past that have gone well and I have walked away mended. It was a real shock initially to have to accept that this wasn't the case with PN. In fact the doctors struggle to diagnose it at all. I feel really angry on your behalf that you were put through all that with pudendal pain on top. I can imagine you are pretty desperate. I really appreciate you sharing your story, it is extremely helpful for someone in my position. Good luck with whatever comes next.

I cannot believe what we all go through on a daily basis yet nobody I have met has ever heard of PN. Not even my GP. It is hard for us.