The PNE Operation is scheduled. Pudenal Nerve.....HERE WE COME!

[Kara29]

My Pudendal Decompression Operation is finally here. May 6th in New Hampshire. I just got off the phone with my awesome Doctor. I've been communicating with him for 3 years now and finally we have made it to the end point. This will be the last chance operation that I am willing to take. My Mother and I are going to make a vacation out of it and stay for two weeks. I've added Morphine to my list of never ending drugs to get a jump on the pain when my Hydrocodone isn't working which is just about always. It's been a long time coming with this, 10 years. I know I may come out of it with no relief but that is the chance I'm willing to take!


Here's to taking chances in life! Cheers!

Kara

[ICNDonna]

I so hope this will be the answer for you.

Warm hugs,
Donna

[leelee88]

I pray this works for you Kara! :pray:

[SharonA]

I, also, pray this will work for you. :pray::pray::pray:

[waterflow]

Hope it all goes well for you Kara and you can finally find some relief after it. Hey, how many people make operations into vacation time too? :-)

[Kara29]

Thank You:hi:

[Briza]

Hey Kara,
I know this has been a long time in the making, like you said...I DO so much pray that this helps you! ((hugs)) :pray:

[ICsmiles]

Kara,
I will be holding my breath til the day comes! (well, metaphorically) I pray this is the answer and that you are graced with release from pain. Pain is the cruelest companion to have to live with for years and years.
You have provided me with comfort and support many times, even when you didn't know it, by sharing your story and ups and downs with pelvic pain - both IC and pudendal neuralgia. I have read that the recovery time can take a while but I hope that you have noticeable relief as soon as possible after the surgery.
many prayers, and hugs,
Sharon

[Kara29]

Sharon,

I'm gad I was able to help you when you needed information.
Thanks for the supportive words and comfort.

Love and Hugs,

Kara

[Krisssy]

Hi Kara,
I just PM'd you with some questions about your Dr. not realizing you were having this surgery. Good luck to you. I have been suffering in so much pain in the clitoral area with the constant urgency and frequency, and I have just realized that this is probably pudental neuralgia. I am curious to know about your doc, as I will be going to him in June. Thank you if you can PM me and answer my questions. To everyone, is a nerve block painful? what exactly is the purpose of it? Thanks. Krisssy

[Kara29]

I'm not having the surgery now.

[blondie45]

I'm not having the surgery now.

What happened?

[Kita]

I am also curious about your surgery. Is it cancelled?
My daughter is having her first nerve injection and I am also curious to know if the nerve block is painful.
Thank you for any replies.

[ICNDonna]

Kara, has your surgery been cancelled? :(

Donn

[Preacher-Girl]

Praying for you Kara. Praying for a miraculous healing. You've been through enough.

[amaranthe]

Did you mean you are not having the surgery now, as in "at this time", but will still be having it later? Or did you mean that now you will not be having this surgery at all, ever?

I am not sure what's going on, or what happened, but either way, I am sure you are very disappointed, as you have been planning this, waiting for it, and counting on it for quite some time. I can only imagine how sad, depressed, and disappointed you must be right now. But, please know that we all care very much and you have many friends here and lots of people who want to support you and help you thru this difficult time.

I am not on here very much lately, since I have been feeling better. I used to be here every day, (for hours on end, doing my best to help any and everyone I could, though mostly thru PMs). However, after a while I just sort of got burned out and now I only come here maybe once or twice a week. But, you are welcome to pm me anytime and I would be glad to offer you an ear, if you need it. (Though I know you have many, many friends and probobly dont have tbe need or time for another.) But, my door (and PM box) are always open to you (or anyone else out there) in need.

But, please, talk to us and let us know what's going on. With so many people here who care, whatever the problem, there is bound to be someone here with an answer that can help you thru it and perhaps even help to solve the problem. But, you have to reach out to us and let us try. You have helped so many, many people here. Let people try to help you this time! Okay?

Sending you hugs,
Amaranthe

[Kara29]

Oh YES,


I'm not sure where I posted that I was not having the operation???

I know what I meant.... I meant that I was not having the operation at that point in time or day....I'm sorry for the confusion.

It's in less than 4 weeks? My Mom and I are taking a two week vacation out of it. It's not a guarantee but I am risking it anyway for at least the hope in reduction of pain, even 5% would be nice.

I'm not sure where I failed to reach out to you all? I always post before my operations to say how I feel, which is usually scared.....but they are using the special Machine on my forehead to assure that I stay asleep during the operation and don't wake up. I will have an epidural for 3 days in the Hospital and then stay in the area locally for a 7 days with post-op pain meds and my regular meds, Lyrica, Hydrocodone, Zofran, Dilaudid, Flerxeril, and Clonopin.

I'm having the Pudendal Nerve Decompression Operation in 4 WEEKS!!! I can't wait but I'm very scared that it won't do anything to help my pain. The odds are slim but it's the last operation left. Our childbearing time is over which has been marked by this operation. It's very difficult to maintain this operation if I was to get pregnant, so it's over on that front. I am saddened and heartbroken but those who know me, know that we gave it all we had and then some and even risked my own body to conceive. No one can say we didn't try everything!

I will have the PNE Decomp in the morning of May 6th by one of the best surgeons for this surgery in the United States. They will go through my vagina which is called the TIR approach.

Pudendal nerve decompression surgery is an option that is usually considered after more conservative therapies such as lifestyle changes, pelvic floor physical therapy, and nerve blocks have not proved to be successful. In the published literature PNE surgery can achieve a success rate of anywhere from 60% to 85% but success does not necessarily mean a cure. Surgery is generally considered successful if there is at least a 50% reduction in pain and symptoms. Occasionally pain and symptoms are permanently worse after surgery therefore the decision should be made carefully.

There are four approaches to pudendal nerve decompression surgery but only three of them have been described in the peer-reviewed literature. The four approaches are the transgluteal approach, the trans-ischiorectal fossa approach, the perineal approach, and the laparoscopic approach.

The TIR approach was first described in the literature by Dr. Eric Bautrant in France.

For women a small incision is made in the back of the vagina about half-way up. For men the incision is in the perineal area between the scrotum and anus. In most cases the surgeon severs or partially severs the sacrospinous ligament to release the compression between the ST and SS ligaments. The Alcock’s canal is explored by the surgeon’s finger and the nerve released from any fascia that might be tethering it.

Advantages of the TIR approach

Smaller incision

Spares the ST ligament

Sounds kinda easy compared to my history of serious operations. They put their fingers in there and decompress that way....seems so easy but I'm sure it won't be. One can dream though.

I love you ALL and always appreciate your love and support 100%! I could not do this without you All! Thank You and I'll keep you posted as I will have access to a laptop while at the hotel we are staying at.

Love and BIG HUGS,

Kara

[Kara29]

I'm getting nervous and cold feet because one of my EMG tests came back inconclusive and I'm worried that they wont find anything wrong or that it will be too hard for them to get to the PN because of the way I develop scar tissues.......some people are straight forward and test positive on the EMG and then don't have long to wait for the operation. I on the other hand don't have it that easy...............

About 3 weeks left.....

I wish there was a better way of communicating to others who had it done but privacy laws prevent doctors from giving out names even if the patient wants to help others.

Kara

[Krisssy]

Kara, what does Dr. Conway say in answer to your fears about these things? Krisssy

[Kara29]

I called him today. I had other things done to indicate that I have it. I'm just in a panic is all...............Everyone keeps telling me he wouldn't do the operation if he felt I didn't need it done.

Kara

[Krisssy]

Kara, I really understand how you feel. I recently went to a urogynecologist who is the chief of urogynecology at the Clevleand Clinic in Weston, Fl. He told me that my nerve pain can be coming from IC, atrophic vaginitis, a rectocele, or my past 3 abdominal surgeries. He said there is no way of knowing. So if he fixes the rectocele, he cannot guarantee it will help my pain. But, I am still going to get it fixed just in case that is the problem. I think we all have to just keep trying everything until somehow we go into remission. You are in my prayers whatever you do decide. You have been through so much, and you are so brave. I am quite a bit older than you, and I was in remission from all symptoms for 18 years until it came back last Aug. So there is always hope that something will work. We can never give up. Your posts have given me your experience, strength and hope. In fact after viewing the pictures you took of your sterile field and instruments for taking care of your stoma, I was thinking that someday you would be a great nurse helping others with this problem. (I am a nurse myself.) I hope my words can offer you the same encouragement that your words offered me. Krisssy