Prof. dr. Jan M. Keppel Hesselink MD Pelvic Neuropathy 03/01 by PelvicMessenger | Blog Talk Radio

Prof. dr. Jan M. Keppel Hesselink MD Pelvic Neuropathy 03/01 by PelvicMessenger | Blog Talk Radio

Dr. Hesselink has a vested interest in chronic neuropathic pain in the pelvis, Central and Peripheral Nervous Systems, and in the phenomenon of "wind-up" or "central sensitization." He is a pharmacologist and a pain specialist (MD). 1:00PM EST March 1, 2012. His latest article brings much hope to answer the mystery behind "neuronal inflammation."

I will be interviewing him tomorrow on the BlogTalkRadio show "The Pelvic Messenger."

This will be an exciting interview for not only pelvic pain patients, but for those with multiple different kinds of "inflammatory", "auto-immune", "neuropathic", or "idiopathic" diseases/syndromes.

God bless you richly,

Jessica

Isaiah 45:2-3

Haven't been here

I haven't blogged in a really long time! I really haven't felt like it. Well, I've felt like it, but sometimes talking to a screen about your issues just re-enforces them. So, I've taken a break.

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!

Holding on

Life has been testy lately. The patience is wearing thin in this household. Our daughter will be 3 soon, which means three years of the biggest blessing (her life) and the biggest curse (my PNE). Would I change it?

NEVER.

The last few weeks, I have come to understand the depth of the blessing the Lord has given me in A. She is so wise, so smart, so intuitive, so creative, such a mixture of J and I, it's just wonderful. She is potty training, and being the strong-willed toddler that she is, has been giving us a run for our money. It's so odd, but through her recent struggles with constipation and fear of "it hurting", I have learned how much a mother can love.

While holding her in my arms, (laying on the floor, of course, for now, at least) after she cried her eyes out after we had to wipe her sore bum, she said through her tears, "Dr. Hibner will fix my bottom." I just burst into tears myself. My angel. My sweet angel. Oh, how she has listened to my pain, and agonized with me in her own innocent, baby way these first three years of her life! Every night, we pray for Dr. Hibner and everyone with PNE. We pray for their knowledge and wisdom, strength and determination to help those suffering with this horrible condition. She's been hearing the prayers of myself and my husband since we started praying with her at about 16 months of age. And now, when her tiny, baby bottom hurts due to diaper rash, she wants Dr. Hibner to fix her. How sweet! I said, "honey, you'll never have to go to Dr. Hibner, I promise, but he WILL help mommy, and he has helped many other people like mommy."

My thoughts change a bit now. We know I need an anterior approach to surgery. While we pray, and wait, as I type here tonight, a calm comes over me. I haven't even been going to church that much lately, or reading my Bible, or have even felt close to God much because of all the stress and pain. But, I know that the Lord Jesus Christ PROMISED ME that I would be completely healed. I will tell you what the enemy of my soul tries to tell me. "Oh, you're just HOPING that with your NEXT surgery, whenever that may be or whomever does it, that you'll get better, but you'll just end up right where you're still at, on the couch with an ice pack. " Or, "you've got just one more shot to get it right, or it's a LIFETIME OF CHRONIC PAIN, PILLS, AND THIS!" Bwahahahahahaha! Devil, get thee behind me! You SUCK! You are a rotten, dirty, bold-faced LIAR. You couldn't keep Christ in the grave, and you can't keep ME from getting my HEALING.

I've gotta get my boldness back --- my loudmouth --- shouting it loud and proud that God will heal me of this rare, mysterious illness. Yes, in the flesh, I am scared. But I know one thing, I was given a VOICE to sing His praises and I will SPEAK his mercies until He is merciful to let me sing again. Until then, my sweet angel A will sing in her beautiful baby voice those lovely, made-up songs about how mommy's bottom will be healed.

So sweet, so innocent, so true. She is my voice, my song, for now...

So, look at that picture at the top of this blog entry. Is Jesus still sitting on a cross with his broken body ripped up like roadkill? No. He is waiting to reveal to this family HIS MERCIES, that ENDURETH FOREVER.

God bless all who pray so diligently for my healing and for this family. May you be richly blessed.

My new mantra...

I am not giving up. Some may choose to accept this as their lot in life. I can't. There is something within me that will not allow me to accept this as my lot for the rest of my life. I am 30 years old.

Yes, I have struggled for 3 years now. I have had so many pelvic procedures I can't even count them all. I AM NOT GIVING UP. I think I am blogging this so I can preach to myself. DON'T GIVE UP!!!! YOU CAN'T GIVE UP!!!! NEVER GIVE UP!!!

Lately, I've been struggling with my identity. I used to be J the singer, J the performer, J the super-wife, J the voice teacher, J the worship leader, J the gospel choir member, J the daughter, J the sister, J the friend.....

Far too often, I am J, the young lady who suffers with this rare, hidden, debilitating nerve injury.

This has got to stop.

I am a wife. I am a mother. I am a daughter of the King, of the Lord Jesus Christ. I am saved by grace, and not by my own works. I am ALIVE!!!!

Really?

Am I alive?

Where are you, J?

My prayer is that when the Lord so chooses to reveal to me my healing and wholeness, that He wipes away any false identities assigned to me by the enemy of my soul.

Lord, let it be now.

Back again, but in the shadow of His wings

What a beautiful picture. Our wonderful Lord, cradling a precious young girl. This is the love I have for my daughter. Oh, how she is a blessing to my (our) lives! After being gone again for recent treatments in Phoenix, she came home to a hurting mommy again, but told me in her sweet voice, "Mommy, you'll be better. You're ok."

How simple and how poignant her faith. What an angel.

I have so much to learn from her. So much.

Recent trip to Phoenix was eventful. I met with my amazing doctor, Dr. Michael Hibner, and as always, he was innovative, proactive, and determined to help in any way he could to rid me of my pain. I am 8 months post decompression. I had a dorsal block which was negative. No dorsal surgery, Praise God! He believes the flare cycle is just being precipitated by muscle spasms. Bilateral Botox was the word. I also had a short infusion of Duramorph and Ketamine to help central sensitization, but I don't think it was long enough. He wanted to do it longer, and I was willing, but with no pre-auth, I was afraid of a huge bill. I want to continue believing God that this is it, that I will make no more trips for treatment, that my Botox will work, relieving the spasms, taking pressure off my decompressed nerve, and allowing it to heal in PEACE.

I ended up with lots of side effects from the Duramorph. I'm just one of those lucky ones I guess. Infection is being taken care of. My dear hubby joked that he doesn't know what to remove first, my "bladder or my brain." I laughed and laughed. He thought I would be mad. It just goes to show that sometimes I do sound like an idiot. He helps me to trust God. Thank you, J!

But, I continue to read my Charles Spurgeon Morning and Evening devotional. And last night, it was so wonderful, because sometimes I just feel like this. Very frequently, in fact. And, it just reminded me that our Savior is readily available to cradle us in His arms as we cry. He has an endless reservoir for our tears, and not one is missed. To God be the glory!

Do Not Be Silent

"To You I will cry, O Lord my Rock; do not be silent to me, lest I become like those who go down to the pit." -- Psalm 28:1

A cry is the natural expression of sorrow and a suitable utterance when all other methods of appeal fail. The cry, however, must be directed to God alone, for cries to others are often wasted pleas. When we consider the readiness of the Lord to hear and His ability to help, we have good reason to direct our appeals to the God of our salvation. It will be useless to call to the rocks in the day of judgment, but our Rock answers our cries.

"Do not be silent to me." A person limited to reading written prayers, may be content not to have prayers answered, but genuine supplicants must have answers. These are not satisfied with results that only calm the mind or subdue the will; they must receive actual replies from heaven or they cannot rest. And they want those replies at once, for they dread even a moment of God's silence. God's voice is often so terrible that it shakes the wilderness, but His silence is equally full of awe.

When God is close, do not be silent. Cry with greater earnestness. When your notes grow shrill with eagerness and grief, He will not deny you a hearing. What a dreadful situation you would be in if God were to become forever silent. If God were silent to you, "you would become like those who go down to the pit." Deprived of the God who answers prayer, you would be in a more pitiable plight than the dead in the grave. It would not be long before you would sink to the same level as the lost in hell.

We must have answers to prayer. Ours is an urgent case of dire necessity. Surely the Lord will speak peace to our agitated minds. He never can find it in His heart to permit His own elect to perish. --- Charles Spurgeon

Hope is on the Horizon...

"....In Christ alone, my hope is found, He is my light my strength, my song. This cornerstone, this solid ground, firm through the fiercest drought and storm...."

I remember when I was leading worship in CA, and an older member of the church asked me to learn this song and sing it for our congregation. Only until I have reached such points of desperation in my life such as the present have I realized the precious meaning of these words.

"....what heights of love, what depths of peace, when fears are stilled, when striving ceased.... my comforter, my all in all, here in the love of Christ, I live."

Life with Pudendal Neuralgia/Pelvic Floor Dysfunction (as I now call it, since my nerve is "unentrapped") has been rough lately. I have had a lot of flare ups. My sweet baby girl is learning to use the potty, and I squatted to hold her on the potty at a public place instead of my usual kneeling down. That did me in. What is it? The muscles surrounding the nerve that flared it? The severed sacrospinous ligament? The nerve itself? Oh, Lord.... have mercy on my dear soul.... stop my worrying mind from always thinking the worst. Whew. Thank you, Jesus. Your peace came quickly. I didn't do anything permanent... I just, well, FLARED it. GRRRRR. Roaaarrrrrrrr. Arr, matey. Whatever.

It all stinks.

I'll get better, and soon. Yes, hope is on the horizon. We did NOT have peace about having the right sided decompression. We cancelled it. My husband and little angel prayed nightly that mommy would not have to have any more surgery, and praise God, I pray that I never do again. This is a great step! Instead, I will be flying to Phoenix to have bilateral Botox injections and an ultrasound guided nerve block of the dorsal branch of the pudendal nerve to see if that branch is involved (that is the only branch that cannot be decompressed during the transgluteal approach that I had in November). Dr. Hibner has seen quite a lot of success in his post-surgical patients with Botox. I hope so. I had it before the surgery and it did not seem to help much. I know my pelvic floor is a hot mess of charlie horses, so it's gotta do something. I have hope.

If you are reading this blog, please do a few things: 1) praise God with me for not having to have the surgery 2) pray for me that this Botox helps and 3) pray that either complete healing comes soon or we get raptured --- no, seriously --- Maranatha! --- (Come, Lord Jesus!)

On a less serious note, I have a curl "stick" that I use to make waves in my hair. My little princess got hers curled too, just like mommy's, before church today. Ahhhh, my little clone. She is a blessing from the Lord. God love her sweet angel soul.

Also, bless the LORD for my husband. God LOVE HIM. He puts up with me. How does he do it? The strength of the Incredible Hulk. Seriously, through God's Holy Spirit and His mercies that are new every morning does he put up with me and this illness. I love him so much. I can't wait to enjoy our lives after the canker worm is done with his eating. (A little ol' King James for you, there.)

Hallelujah! Jesus is Alive!!! I just had to say that because my daughter sings it constantly.

Be blessed and have FAITH. And, Maranatha.

We need more

I have come to the realization that this country, this world, the chronic pelvic pain sufferers like myself who struggle to get both in and out of bed every day deserve and need more doctors and medical professionals to treat and hopefully solve the enigma of Pudendal Neuralgia and Pudendal Nerve Entrapment.

There are so many doctors out there. At a recent wedding I attended, (how I made it through, I don't know... it must have been my supremely cute outfit), I spoke to a well-seasoned urologist about how he was struggling to find a junior partner so that he might retire someday soon. Where are all the specialists going?

I must get back on track. So, it doesn't really take a specialist to learn about PN/PNE, just a motivated medical professional who is willing to study cadavers, learn the mechanics of the Pudendal Nerve, its purposes and its duties, and how it can become compressed or entrapped. Then, the most important of all is HOW CAN WE UNENTRAP THE NERVE IN THE LEAST INVASIVE METHOD POSSIBLE WITHOUT SUCH POOR SURGICAL OUTCOMES?? I know my doctor cares tremendously about his Pudendal patients. I think he is to be commended because he is actually teachable, for being such an accomplished professor and individual himself. Where are the drugs for neuropathic pain that don't come with SEVERE and sometimes deadly side effects?

I hope there is a medical student, resident, fellow, or even attending physician that is reading this blog entry right now because their patient presents with mysterious pelvic pain symptoms. Consider what nerve innervates the majority of the pelvis. Look to the source of how pain signals are even transmitted to our brains..... nerves.

If you have read my previous blog entries, you will see that I have a Bachelors and Masters in Music. NOT MEDICINE. However, I am a patient keenly aware of my body, where my pain lies, and I will not stop my big mouth flapping about this disease until it is as easy to cure as appendicitis.

Help me by posting, emailing me at fightpne@yahoo.com, or contacting me on this blog. I need help. WE NEED HELP. I speak for so many others. SO.MANY.OTHERS. For doctors that have this disease, for PhDs who have had to stop their teaching due to this disease, for singers/songwriters paralyzed by pelvic pain, for young mothers desperate to know what is wrong with them, for cyclists and former engineers who now live on disability.

And, I must close with this: God have mercy on us.