A's Mommy's 4 month post-operative report (Hibner)

THERE IS HOPE

Dear friends,

I wanted to share with you my 4 month update. I am now 4 months post-op from LEFT sided pudendal neurolysis with Dr. Michael Hibner, Phoenix, AZ. I've posted along the way here and there, concerns, etc., but I want to try and break it down a little bit.

--Before my surgery, I was in 7/10 pain as soon as my feet hit the floor in the morning. My left Alcock's canal felt like a knife was stabbed through it. With every step I took, I felt a horrible pinching, burning, pulling sensation in the crease of under my buttock and perineum. It would send neuralgia (tingling, burning, shocking) into my vulva, up through my piriformis and all over the place. By 12 noon, I had to lay down completely prone (on my stomach) and it would take at least an hour for the pain to subside.

Post-surgery (4 months) --- there is no stabbing in the Alcock's canal when my feet hit the floor. There is no pulling, pinching, stretching sensation. There ARE devastating (at times) new symptoms such as electric shocks that feel like lightning strikes my crotch. However, I have been told this is a GREAT thing as the nerve is regenerating and the shocks should subside and get less frequent over time, which THEY ARE.

--Before surgery, I took no pain pills (opiods). I was only on 300 mg Neurontin 2x a day, Vaginal Valium suppository 10mg once at night, 10mg Amitriptyline at night, and Prozac 20 mg once a day. I did not take opiods because they did not work for my neuropathic pain, plus I have a toddler and had to look after her. It was only after my Botox that I gave up and had to hire a nanny part time and put her in daycare. I couldn't do it anymore.

Post-surgery (4 months) --- I took Percocet for a while in very low doses (maybe only 2 pills a day at the max) for about 2 months post-op. This helped with the incisional and ligament repair pain and sacral pain. It did nothing for the nerve pain. The thing that helped the nerve is the ON-Q pain pump. I swear by it. I wish I had a permanent one! Now, my meds are Valium (oral) 5mg 2x a day, Prozac (which will most likely and hopefully soon change to Cymbalta --- I see the psychiatrist Friday), Lyrica 75 mg 2x a day, and the Amitriptyline 10mg at night. I also take TONS of vitamins --- a multivitamin with no iron because I don't want constipated, colace, Miralax, High Potency B Vitamin complex for nerve health, Vitamin D, and cranberry pills, also Culturelle (a probiotic)

At 3 months post op, I started driving short distances, using no cushions. I lean back in my car, sorta, while driving. I feel my right side a lot more while in the car (as you can see in my signature, I will have another TG later on this year for my right side). While walking, I feel my right side pinching, pulling, stretching, but NEVER to the same degree my left side was before my surgery. The left side was way worse (as indicated by clinical examinations by Dr. Hibner, Loretta, and by the 3Tesla MRI I had by Dr. Potter). I started PT at 8 weeks post op. I started internal PT at 12 weeks post op and gave up after two internal exams, which flared my right side so much it had me down for the count for a whole week. My right side needs done.

Good news --- my left side feels softer internally than my right side. This has SWITCHED since before my left sided surgery, where my left side was as hard as a brick. The nerve is no longer entrapped, so the muscles have either atrophied due to lack of use, or they are calming down.

---Sitting--- hahahaha... not so much. I can sit on a completely hard surface for about 30-45 minutes with no nerve pain, just pain and pressure from the ischial tuberosities. My husband made me the modified Antolak gardner's kneeling pad cushion thingamabob and that helps some. Ice in the Alcock's canal still feels the best.

As the weeks go on, I am noticing less pain on the left and more on the right. Remember, my right side is still entrapped.

My ligament feels completely solid and grafted. My PT said with ligament repairs, at 4 months they should be good to go. I'm still careful though not to bend it <90 degrees. Still too chicken. Picking up A still causes a bit of an increase in pain. I am getting stronger. I am eating more. I have gained weight. This is good.

BOTTOM LINE: I HAVE MANY BAD DAYS. I AM TRYING TO FIND THAT "BALANCE' BETWEEN DOING TOO MUCH AND NOT ENOUGH. We still can't have intercourse. However, I am thankful and eternally grateful that I had the surgery with Dr. Hibner because there was nothing else. My life was zero. Life is coming back. I have accepted that my nerve may take 12-18 months to fully heal. I am glad I have come to that acceptance. You will still see me on the boards complaining from time to time, because I'm a human, and I don't know what to expect. However, I don't regret it FOR A SECOND. I NEEDED THAT SURGERY. It saved me. Thank you, Dr. Hibner, but most of all, THANK YOU JESUS! YOU PROMISED ME I'D BE HEALED, AND SOMEDAY I WILL BE COMPLETELY HEALED.

I hope that this post gave some people hope. That is what we are here for : HOPE.

God bless,

A's Mommy

Too happy not to share

I've been feeling better.

Let me say that again:

I'VE BEEN FEELING BETTER!!!!!

God, please don't let this stop. I am still getting the nerve zaps, you know, those electric shock lovelies that split you in two?? The pain that frozen ice cubes applied against bare skin does not dull? Okay, you get it. I still get them. But, I am doing more. I drove this week. I bought new bedding at Target. Reclined like an old rapper from the 90's in my hooped up Jetta cause I don't want to put pressure or strain on the nerve. That's about the only way I can sit.... either that way, or on a completely hard piano bench at my inlaws. I've been off narcotics for over 2 weeks now. Still on Lyrica 2x a day, Valium 2x a day, and Amitriptyline at night. Oh, and the 'zac (That's Prozac, people) once in the morning. I take a bazillion vitamins: High Potency B-12 complex for nerve health (in drop form, under the tongue), a B complex pill, Vitamin D3 (thanks, Pianogal!), a multivitamin, Ester-C (non-acidic for those IC sufferers out there ), oh and I still take my probiotics, Miralax (although less and less), and docusate sodium (lets face it... I'm too scared to have a difficult #2. My poor nerve needs babied all it can!

Yes, there's a few times this week I've been laid up with some ice. There's never a day I don't ice at night. But I'm noticing now that I get out the ice LATER and LATER in the day. I'm doing Transverse Abdominus exercises out my wazoo. I can't do much else from PT (still causes instant tingling/burning in vulvar area when I squeeze my glutes), but I am trying to be more conscientious about walking without a sway back (like I'm still pregnant). My knees have callouses on them from chasing around after A..... haha. Who cares. It's my baby girl. If I can play with her for a few minutes, my kneecaps can suffer. What's that compared to pudendal pain?

Most importantly, I have been PRAYING and BELIEVING for YOUR HEALING. All of those of you that go to the forums, read my blogs, don't read my blog, whatever. I still call out your name in prayer. I've never been a good "pray-er". God's teaching me. Hallelujah. Who cares how, right? That's what's so good about praying in the Spirit:

Romans 8:26 (New King James Version)

²⁶ Likewise the Spirit also helps in our weaknesses. For we do not know what we should pray for as we ought, but the Spirit Himself makes intercession for us ^[a] with groanings which cannot be uttered.

Yes, I'm a pentecostal, holy-rolling (I've never actually rolled, haha) Christian. But, even those of you who I'm friends with who aren't pentecostal and holy rollin' (again, LOL) still love me, right? And that's okay. You can still love me. You don't have to agree w/ me, but you can still love me, just like I love you. And I will still pray for you. I will still believe.

I am not giving up this PNE fight. Peace.

WAAAAHHHHHAT is Pudendal Nerve Entrapment/Pudendal Neuralgia?

What exactly is Pudendal Nerve Entrapment or Pudendal Neuralgia? Since I have been broadcasting this blog to the world, many are asking. I figured I would borrow some info from the sites that helped lead to my diagnosis, TIPNA and PudendalHOPE, and put together a little blurb about what it's all about. If you want to read more about it in medical-ese, you can check out the links to these two awesome websites at the bottom of my page.

Taken directly from http://pudendalhope.info

Anatomy

The pudendal nerve is a sensory, autonomic, and motor nerve that carries signals to and from the genitals, anal area, and urethra. There are slight differences in the nerve branches for each person but typically there are three branches of the nerve on each side of the body; a rectal branch, a perineal branch and a clitoral/penile branch. There is ongoing research into the exact areas innervated by the pudendal nerve. PN occurs when the nerve or one of its branches becomes damaged, inflamed, or entrapped.

Symptoms

The main symptom of pudendal neuropathy is pain in the areas innervated by the pudendal nerve or one of its branches. Possible symptoms include burning, loss of sensation or numbness, increased sensitivity, electric shock or stabbing pain, knife-like or aching pain, feeling of a lump or foreign body, twisting or pinching, abnormal temperature sensations, constipation, pain and straining with bowel movements, straining or burning when urinating, painful intercourse, and sexual dysfunction – including hyperarousal or decreased sensitivity. The pain can be on one or both sides and in any of the areas innervated by the pudendal nerve, depending on which nerve fibers and which nerve branches are affected. The symptoms can start suddenly or develop slowly over time. Often the pain gets worse as the day progresses and is worse with sitting.

Causes

There are numerous possible causes for pudendal neuropathy. Some of the possible causes are an inflammatory or autoimmune illness, frequent infections, tension on the nerve, a nerve entrapment similar to carpel tunnel syndrome, or trauma to the nerve from an accident/fall, exercise, childbirth, prolonged sitting, or surgery. Sometimes there is no apparent explanation and some doctors have theorized that the problem can be hereditary due to a musculoskeletal predisposition. Occasionally the problem originates in the spine or sacral area rather then the peripheral pudendal nerve.

Diagnosis

The diagnosis is usually made based on the patient’s symptoms, history, and exclusion of other illnesses such as infection or tumor. While no test is 100% accurate some of the more commonly used tests are the pudendal nerve motor latency test (PNMLT), electromyography (EMG), diagnostic nerve blocks, and magnetic resonance neurography (MRN). Pudendal neuropathy can occur in men or women although about 2/3 of patients are women. It is considered rare and many doctors are just now becoming aware of this illness. Sometimes it is referred to as cyclist’s syndrome, pudendal canal syndrome, or alcock’s syndrome. Pudendal neuropathy can have similar symptoms to another disease or be misdiagnosed as another disease. Those most often associated with or confused with PN are chronic non-bacterial prostatitis, levator ani syndrome, proctalgia fugax, interstitial cystitis, vulvodynia, vestibulitis, chronic pelvic pain syndrome, hemorrhoids, piriformis syndrome, coccydynia, ischial bursitis, idiopathic (of unknown cause) orchialgia, or idiopathic prostadynia. Many PN patients have been to numerous doctors and suffered for many years before finding a diagnosis. Sadly, often PN patients are told their problem is psychological.

Treatment

There are many treatment options depending on the cause of the neuropathy. The most common treatment options include pelvic floor physical therapy to relax the overly tense pelvic floor muscles, medications, pudendal nerve blocks, and if an entrapment is suspected pudendal nerve decompression surgery. Other available options are pelvic floor Botox, intrathecal pain pump, and neurostimulation. The administrators of this website are volunteers who are veterans of pudendal neuropathy.