Surgery for Halloween

IMPORTANT:   I am going back through my blog and adding this warning to every post about PNE surgery.
WARNING:  PNE surgeries are failing.
I, as well as many friends I have met on the way, have undergone surgery only to get worse; living lives in unbearable pain and distress. I personally know five people who are now bedridden.  Not only are they still unable to sit, but now they are also unable to walk. A couple of them are in so much pain and despair they no longer wish to continue on. 
I  hold the surgeons who continue to perform PNE surgery responsible for causing unimaginable damage and pain. They are leaving their patients in terrible distress, and when patients call their offices they are ignored or just reminded that healing from PNE surgery takes two years. I know many of us who have waited, in bed, for the two-year mark, only to find out that we are no better, and in fact, much worse than before the surgery. We are left to fend for ourselves. Once I really accepted that, I was able to move on and find a way out. Instead of trying to get better, I sought relief for the pain, and found Dr. Joshua Prager at UCLA.

Oh boy! Guess what I’ll be doing for Halloween this year?

Nope. I won’t be handing out candy to neighbor kids.

Nope. I won’t be going to a costume party.

In fact, I don’t even get to dress up for Halloween… cause I’m having surgery. Yep, folks, this year Halloween falls on a Monday, a perfect day of the week for surgery. Hmmmm …. wait a minute… Maybe I will be dressing up for Halloween….  if you consider an O.R. gown a costume! 

I can have some fun with this! Maybe get some vampire teeth and fake blood — so when the surgery team comes for the pre-op check and to take me back to the OR, I’ll be waiting with a big surprise for them! Muahahahahaaa!  Trick or treat!!!

Well, now I feel MUCH better about going into surgery — remember me on the morning of Oct. 31 – just in case you want to send me (and my surgical team) some special energy right about that time.

I’ll be in the O.R., where my super surgeon, Dr. D, will be working on the inferior cluneal branches of my posterior femoral cutaneous nerve (try saying that 3 times!) which is wreaking havok on the muscles of my left buttock, down into my left leg and up into the left side of my pelvis. Those nerve branches pass right next to and over the ischial tuberosities, also known as the “sit bones,” which explains why I can’t sit and why I have trouble walking very far. Even standing has become painful, and as you can imagine, this has an immense impact on my quality of life and what I can and cannot do. 

I have great admiration and respect for my doctor, who has successfully diagnosed, decompressed and resected thousands of nerves in a career that spans four decades. If there is any neurosurgeon out there who can “fix” me, it is him.

However, I also have to remember that my nerve pain has been stewing for over 16 years. I was not diagnosed early on, which meant years of time passing while doctors scratched their heads and I popped pain pills just to get through it. I missed out on early treatment that might have turned the tide right then and there. I also developed interstitial cystitis, a medical term which means “my bladder hurts” — which may or may not be connected to my nerve damage.

It is a sobering fact that not everyone beats this thing. There are plenty of suffering people on the pelvic pain forums who can attest to that. There are also too many people who are no longer with us because they just “couldn’t take it anymore.” It’s been two years and two months since my good friend L decided that suicide was her best solution to this pain.

Yet I have also seen some exciting recoveries. I have two personal friends who were in the same boat as me, bed-ridden and depressed, both who had see multiple specialists, and who were trying to accept their lives as chronic pain patients. Yet six months to a year after surgery with Dr. D, they are now up and on the go, living their lives again! 

 I want to be like that.

So that’s why I’m willing to bare my bottom in one of those open-backed hospital gowns. Even more to the point, that’s why I’m willing to get sliced open once again in the attempt to “get my life back” too.

And maybe next Halloween I can be the princess at the ball, shining in a magnificent, sparkling gown with diamond tiara and all the trappings. Let’s just hope I don’t need a bejeweled walker to go with my ensemble.


2 responses to “Surgery for Halloween

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