Well, I had more surgery. I had the very surgery that I should have had from the very beginning. I had an approach that was lateral to the perineum, and access easily the madly entrapped mess of perineal branches of the pudendal nerve and the distal pudendal nerve in the Alcock's canal. Yes --- this is what it was --- all along.
I am very thankful for the physicians that have helped me along the way... caring physicians like Dr. Michael Hibner, MD of Phoenix and Dr. Lynda Peterman, MD (anesthetist) of Phoenix. My primary care physician, Dr. Nicholas Fuerst, MD, and his wonderful office manager, DEBBIE! Oh we became PROS at writing appeals to insurance companies, eh Debbie?
I am very thankful for Prof. Oskar Aszmann, MD of Vienna, Austria. He impacted my life tremendously because in a surgery that may have seemed like a routine neurolysis (albeit complex and in need of someone with great skill), he gave me a shot at a new life. A better life. I feel perfect peace about going to Austria to have surgery.
One of the things that is so impressed upon my soul is the difference that a physician can make in a patient's life. I implore doctors who might happen upon my blog to realize this. Especially when it comes to such a specialized area and condition such as PNE.
I digress----- I looked up at the TV and the Miss America pageant is on! Chronic neuropathic pain has impacted my life so much that I look at the smiling faces that I used to stand among while participating in pageants, and I wonder how many are cringing with pelvic pain. I wonder how many have been abused. How many have eating disorders. How many hide under the covers and cry endless rivers of tears because of something they can't change.
Through my journey, lots have said "try to distract yourself". Well, there is a lot of pain that comes with healing. Unfortunately, due either to the initial nerve crush injury itself, or the numerous pelvic surgeries (not just the neurolyses) that I have had, I am in the 2-5% of patients that developed Reflex Sympathetic Dystrophy, or Complex Regional Pain Syndrome. Just like I was among the 1/100,000 that developed PNE, and the 1% that developed Asherman's Syndrome (uterine adhesions) after a post partum D&C.
Looking up again --- sorry for the diversions, but I am actually a real human and not just a "physician without a degree" specializing in pelvic nerve pain --- the STRONG MAN competition is on TV! Where do these HUGE men come from!!! Yoi! Swedes...??? Maybe eating to stay warm really is something they must do up there ---
The guacamole I made tonight was horrible....... yuck.
Anyways, back to the blogging. I hate the word blogging. It is such a dumb, made up word!
So, here I am.
And until I float in a cat-embossed tin can far above the moon, I guess I will continue advocating for people who got pooped on by the bird while riding a bike -- people that were totally normal, then BOOM.
I hate bowling!
4 comments:
Jessica,
Please call me. I have never in my life known such despair. Jesus saved and changed a desperate sinner like me and I now feel so lost. There is no doubt I have PNE.
Bobby Baker has my number.
JOE
I have a lot of questions for you and I may email you in order to ask them. I will read your blog in more detail, but I want to know how you found out you had PNE. Most doctors told me I don't, but I have wondered all along if maybe I do. How did you get a definitive diagnosis? And how are you feeling so far?
I'm one of those people, the 1% of 1% who always reacts adversely to everything, so I fear surgery would make my pain even worse than it already is, as it has gradually improved over the years and I don't want to lose that improvement. Life in mild to medium pain is so much better than life in severe pain. And I've worked so hard to get where I am now.
In any case, feel free to reply here or just tell me to e-mail you if that's better, and I will. Or you can contact me through my blog too. Thanks so much for sharing your story.
Dear Unknown,
Please email me at fightpne@yahoo.com.
Additionally, I recommending you joining the two forums listed at the bottom of my blog. They are both a tremendous source of information AND support. There are also Facebook groups you can join. Type in Pudendal in the search box on Facebook.
Warm regards
I entered my Google ID so I thought it would register my comment under my name - apologies for that. Unknown = PainInTheMom, http://www.paininthemom.com. I will follow-up by e-mail also. And thank you.
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