Surgery May 9*

Read and discuss about the many surgical options and the surgical centres Worldwide.
nervyjoe
Posts: 29
Joined: Tue May 03, 2011 6:09 am

Re: Surgery May 9*

Post by nervyjoe »

Hi Lernica, thanks for the nice words - I will be staying in phoenix until saturday the 14th, which is when i'll take a two and half hour flight back to my home town. I think i'll have to spend the extra $ and get my self a first class ticket so that i can be as comfortable as possible. the Dr's office told me they would give me a letter asking the airline to let me stand as much as possible so hopefully standing wont cause me too much pain..if anyone has any advice as far as air travel and how to best move through the airports please let me know - thanks again
johnd.h
Posts: 45
Joined: Tue Nov 02, 2010 9:54 am
Location: Kent. United Kingdom

Re: Surgery May 9*

Post by johnd.h »

Good luck NJ, your story is very similar to mine, you might take some comfort from my post which I am about to do.

John
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: Surgery May 9*

Post by nyt »

If you can afford a first class seat or what I did was purchase two seats as two seats are cheaper than one first class seat. It really helps to be able to stay off of the site as it is tender and gives you room to stretch out your legs. Also, for me walking was difficult but I have more than just PN so it is hard for me to judge that but I can say that you will have a dressing on your butt that you will find a little bit restrictive for movement. You can ask for a wheelchair that way you don't have to stand in any lines, easy pat down because of the pain pump and check your luggage so you aren't pulling anything heavy. This will make your life easier.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Surgery May 9*

Post by Karyn »

Best wishes, Joe!
Please keep us posted! You have lots of people pulling for you and wishing you the best!
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Surgery May 9*

Post by Lernica »

Dear Nervy,

For tips on air travel, see the thread here: http://www.pudendalhope.info/forum/view ... nogal#p844. Some of Pianogal's tips are very funny, like, don't wear all black, so no one thinks that your strange movements inside the plane mean that you are a terrorist!

It's probably too late for you to read this post as you are probably on your way already. But in case you aren't, good luck again!!! We're all rooting for you.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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A's Mommy
Posts: 447
Joined: Fri Sep 17, 2010 12:46 pm
Location: Pennsylvania
Contact:

Re: Surgery May 9*

Post by A's Mommy »

Dear NervyJoe,

I want to wish you the absolute best with your surgery with Dr. Hibner!!! I had surgery on my left side approximately 6 months ago and have seen improvement, so there is hope. I will return for surgery on my right side in late June. I am young like you (age 30... you sound like you are younger though based on what you wrote in your initial post). This disease is no respecter of persons, that is for sure, it hits all ages.

You are in the best hands and the only advice I can give you is know you have a great doctor caring for you and operating on you (and so is his fellow, Mario Castellanos, MD) and they have good anesthesiologists there who are very nice. Mine was Lynda Peterman, MD. Super, super nice woman.

Praying your surgery goes well. Trust me, you will LOVE that pain pump (I know, I did!)

A's Mommy
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Surgery May 9*

Post by helenlegs 11 »

The very best of luck for today Nervyjoe.
Take care
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
nervyjoe
Posts: 29
Joined: Tue May 03, 2011 6:09 am

Re: Surgery May 9*

Post by nervyjoe »

A bit of an update...and a couple questions:

First off, thanks to everyone who posted best wishes for me

John, thanks for posting your update right before i went in for surgery, i did provide me with some comfort as i was very nervous the night before. I'm glad you're feeling a bit better! it gives me hope for sure. Same to you A's mommy, thank you!

It has been 3 days since my surgery, and i have to say that the way i have felt physically has been pretty much as i expected, not great but not terrible either, pretty beat up though - I guess the pain pump is doing it's job because i am almost completely numb on my entire right butt cheek as well as the areas where my symptoms usually present themselves.

Is that how the post-ops have felt also? mostly numb on the operated side?

I have felt a bit of burning here and there (not too much), anyone else experience the same? I would hate to think its a bad sign..

Also, did the post ops have a bit of blood back up into the pain pump catheter? i know the hand out says its normal but it still worries me, it seems like there is just a little bit more as time goes by...

Re: entrapment, Dr Hibner told me the morning after surgery that the nerve was entrapped right at the sight of the sacrospinous and sacrotuberous ligaments. I guess that gives me some sort of relief because if he would have come in and told me that he did not see an entrapment anywhere I would have been perplexed to say the least.I asked him if it was something that could have been fixed with more injections (as opposed to doing the surgery) and he didn't think so (couldn't say for certain of course).

I had my first b movement on Monday night, and have had one daily ever since - I do feel a bit of discomfort during the movement though- i suppose this is normal? it's not excruciating pain by any means, more of a heightened tenderness at the sight of where the nerve probably is..

I have been taking 3, 5-10 min walks daily and laying in bed the rest of the time - mostly laying on the side that is no operated on and on my back...nyt gave me a great suggestion, laying on non operated side with pillow between legs - that has been comfortable-any other suggestions?

Road to recovery begins now...I especially liked the quote on john's update post: "Life is like a grindstone, it will either polish you up or grind you down, depending on what you are made of!
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Surgery May 9*

Post by Lernica »

Hey NervyJoe,

Thanks for the update. It sounds like the surgery went well and that the recovery is going as expected. Keep up the good spirits and keep us posted! We'll all thinking about you.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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A's Mommy
Posts: 447
Joined: Fri Sep 17, 2010 12:46 pm
Location: Pennsylvania
Contact:

Re: Surgery May 9*

Post by A's Mommy »

NervyJoe!

You made it!!! You are PNE- free!!! And the pain pump is bliss!!! Enjoy the numb butt cheek while you can! I can't believe you have a bm that fast... whatever you do, DO NOT GET DESPERATE AND TAKE MAG-CITRATE! (Story from hell from me post-surgery....I was so desperate to poo....yeah.... bad story).

Keep us posted on your updates.... and don't worry about a little blood backup into the catheter.... Lisa will flush it when she removes your wound-vac.

Hang in there. You're brave!!!

Pls let us know when you get your op report too.

Thx!
A's Mommy
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
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