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

God wants me to say this (to myself... maybe you too?)

Have faith in God. For assuredly, I say to you, whoever says to this mountain, 'Be removed and be cast into the sea,' and does not doubt in his heart, but believes that those things he says will be done, he will have whatever he says.

Therefore I say to you, whatever things you ask when you pray, believe that you receive them, and you will have them.

And whenever you stand praying, if you have anything against anyone, forgive him, that your Father in heaven may also forgive you your trespasses.

But if you do not forgive, neither will your Father in heaven forgive your trespasses.

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So, these are the words of Jesus, from the Bible, from Mark 11: 22-26 (Mark chapter 11 verses 22-26).

Oh, God, how HARD it is to trust. But, when I became a Christian, I swore my allegiance to you and to Your Holy Word, that I would believe everything therein. So, in regards to my mountain of PNE, if I let faith arise, it will be moved. How long? I don't know. I'm not going to sit (haha, I don't sit, YET) and do nothing and just wait for God to open the genie bottle of wishes. In the meantime, I will try to be there for my friends that suffer with PNE and with my other friends and family that have other problems that aren't PNE. My husband suffers with hearing loss that is generational. I want his mountain moved off him. I have many friends and family that are alone and wishing for a spouse. I want their mountains moved. Be thou MOVED!

BELIEVE. That is my one word. www.myoneword.org. I learned about this in MOPS. (Mothers of Preschoolers)

Also, for you PNE people, I bought TheraPearls Ice Packs. They really rock.

What good am I?

You know, I had a revelation. I can't give up. My heart is too big. I want to help. But what..... wait? I'm not better yet!! How can I help?

I can give support.

I can give encouragement.

I can be real.

I can pray.

I can praise God.

I can BELIEVE.

I love my PNE friends, my fellow sufferers... someday, we will be fellow people who are BETTER and freed from this horrible hell pain that is all-consuming. I pray that it is replaced with the all consuming fire of the Holy Spirit. I pray that we are all used for the Lord.

On a side note, you may be a family member suffering because your spouse is in so much pain and torment, and you have no way to reach them. You may be a hurting mum, worried about her son/daughter's seemingly incurable disease.... watching them crumble before your eyes while you can't do anything about it.... You may be a neighbor, a friend, watching your pal fade away, threatening suicide, feeling despair.

Yes... more reality from the PNE world. Oh, God, I pray the PNE doctors read my blog somehow and that they can see how truly important they are to us suffering. They aren't Gods. They are only men. But, God can use their hands to heal. Please let them know that. And, we patients aren't crazy. We only want a slice of life back. No..... we want IT ALL. We deserve it all!!! We are human. We want peace in our bodies. I will continue to pray and "roll in my holy-rolled-ness" (haha) for these PNE doctors and for more to be raised up.

God we need help.

I want to burn my ice packs. Is that possible???? Can I set a blowtorch to my Lyrica? How about I throw away the Valium? I'll give it to the neighbor's smelly cat. Just kidding. I want OUT. I'm done with the PNE club. I'm leaving the lunch table.

Love

Happy Valentine's Day! Another Hallmark holiday... eat some chocolate if you can, tell each other how much you adore one another, make love, and move on....

Right.

It doesn't work that way in the PN'rs life. Love is challenging. For singles, it is a love wished for-- "will I ever find someone to love me like I am?" For couples, it is often without traditional intimacy, thus leading to frustration, anger, longing, depression, hoping, dreaming, WAITING.....

Oh...... WHEN WILL I BE HEALED? Make me whole....

I want to experience love again. We are learning a whole new way to love. It isn't easy. It comes with tremendous frustration, effort, all of the above. It has to come from both sides. There has to be a deliberateness to make it work. This is so foreign.

I have always been a hopeless romantic. I have loved this song ever since my Dad suggested it for J and I's wedding. I've always loved Babs (Barbra Streisand). What a phenomenal instrument God has blessed her with. Enjoy the sappiness of it. And don't give up hope. I am preaching to myself here too.

You are so beautiful

"Awww.... Barbie, you're so pretty. Such thick, brown hair and long eyelashes--- you don't even NEED makeup!!! Naturally pink lips, and you're thin, too! And, where'd you get that sweater, girl?"

And Barbie replies, ever so sweetly:

"Oh. You didn't notice my button? Was it NOT BIG ENOUGH? It's as big as my head for cryin' out loud!! Can't you see it? Yeah, that's right. Me. Beautiful Barbie. With Chronic Pain. HIDDEN Chronic Pain. "

So, you see my point, readers, friends, loved ones. I will strap a megaphone to my face and tell you and the whole world about Pudendal Nerve Entrapment if I haven't already. It's a hidden pain eating away not only at our most intimate, personal areas, but at our self-worth, our identities, our everythings. I am just being REAL here, like my blog originally stated I would. I made a new PNE friend tonight. Praise God for that. No really, seriously. I'm happy I made a new PNE friend. We need to network. I'm finding that there are just too few doctors and too MANY patients that it's up to the majority to make something happen. So, kudos (and I hate that word, but my brain can't come up w/ another one right now) to those PNE people that are spreading the word, being sleuths behind the scenes, demanding answers, all in kindness of course, because bashing someone over the head or throwing yourself at the foot of the podium of the International Pelvic Pain Society meeting just won't do it. Hahaha at A in CA :-) She gets this one. I have to refocus my brain before I'm off to bed. Because getting up in the morning for a PNer just ain't easy. So, I'm going to try to find a verse that sums it up and gives hope to not only me but to you, reader, too.

^{Psalm 37}

³Trust in the LORD, and do good; so shalt thou dwell in the land, and verily thou shalt be fed.

⁴Delight thyself also in the LORD: and he shall give thee the desires of thine heart.

God has never failed me yet. He has never failed me yet. He has never failed me yet. HE HAS NEVER FAILED ME YET.

Flare Up = No fun

I went to PT on Tuesday. It was my fifth session. My second internal exam. She lightly pressed on the sacrospinous ligament on the right side. I think she did this both internally and externally. The Alcock's canal runs right near there. Everything is so close. Anyways, I've been flared now for days since then. Nothing is helping. Constantly sitting on Polar Ice packs. I think I may be close to giving up PT, well at least internal. I can't go down this road again. I declined so fast and was in so much pain with my 4 months of PT before my TG surgery in November. It was too much. I want to go for a walk, get some fresh air, something. But I know that until this flare passes, it will just continue to aggravate my entrapped nerve. I am talking about the right side here. My left side was freed during the TG surgery in November. So now I only have one side entrapped. I guess I am going to end up being a bilateral. I hope the pain goes away. Maybe the scar tissue is so minute that it can die down and go away and not bother me. Pushing on the nerve certainly won't help though. I can't go through it again. I'd rather have the pins and needles than the stabbing feeling in the Alcock's canal. That is (and was, for my left side, previously) the ultimate worst. Feeling like you have a knife in there and just want to pull it out.

J and I are going to travel sometime to the revival in Mobile. I need strengthened in my faith and in the healing power of God. God can do anything. He can remove scar tissue and restore my nerve to health without a surgeon's scalpel. I knew in my heart that I would have to have surgery on my left, but I still haven't received that confirmation yet in my spirit about the right side. Maybe it's too soon to tell (just 13 weeks out today), but still. Week after week of sitting (haha, I mean lying) here with ice "down there" just isn't a quality of life. J and I deserve so much more. We deserve LIFE. How can we make a LIFE while this is going on? That is our challenge. If anyone has some suggestions, I'd be happy to take them.

Thank you.

Yup. That's how I feel today. Ker*Plunk. Tables turned. Right side worse than left. Left side healing? Yes. I trust in that. Right's been hurting a lot lately, just haven't posted it. But I'm posting it tonight. Will I be one of the ones that have to go through another surgery to get rid of this darn scar tissue surrounding my poor nerve? Time to start seeking answers again. Oh, Lord. What do You have for me? What is the purpose in this pain? Faith like an apostle? Martyrdom? Am I dramatic? (YES) I am human.

I want a sibling for A.

What else do I want? I want, I want I want. What do you want, God?

Jeremiah 31:3 (New King James Version)

³ The LORD has appeared of old to me, saying:

“ Yes, I have loved you with an everlasting love;
Therefore with lovingkindness I have drawn you.

Love, me Lord, and take away my anguish. Set me free from this bondage. The ups and downs. This is PNE. Ahhhhhhhh! Someday, someday...... I will beat this. We will beat this!!! I can't give up!! I'm like Rocky......... I may be down for the count, but I'll beat you in the end. (Theme song playing in my head). Are you sick of reading my post? Ok, good. Cause I'm sick of writing it. Please just pray for me tonight. Thank you all.