Surgery

Dr Thierry Vancaillie
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Sydneysufferer
Posts: 18
Joined: Mon Apr 23, 2012 3:39 am

Re: Surgery

Post by Sydneysufferer »

Thank you for that Catherine and Janet!

I understand you (Catherine) and Violet had the TIR approach... I can understand that even sacrificing the SS ligament requires post-op physiotherapy. I guess that is like any surgery.

The ST is the one that concerns me BUT I am confident that where there is a will, there is a way (in terms of getting your body to pick up the function elsewhere). If that means core strengthening exercises then I guess that is the way it has to be!

I used to have very little core strength but realised the importance of it some time ago and believe I now possess stronger abdominal muscles. Room for improvement there though.

My partner used to be a professional soccer player and had groin surgery some years ago. They didn't cut right through his ligament (one of the ones in the inner thigh) but did weaken it by snipping it in places. He recovered well but didn't do physical therapy as he was supposed to. He does think he has some scar tissue going on which does give him pain every so often. He feels it "crack up" and become somewhat more flexible as he runs/exercises but still doesn't think he has the flexibility that he once had. He strongly believes if he did the proper rehabilitation he would have recovered MUCH better.

My dad is a doctor and believes most people just don't do the right rehab after surgery mostly because they feel they make so much progress and don't feel like they need to. Then issues appear later on. Maybe this is food for thought regarding the ST ligament and SIJD issues.

I have a skype consult with Dr. Hibner coming up (feeling quite blessed right now) and will ask him some of the questions about my case. I read somewhere that some people with mostly PGAD have recovered well after TG surgery. It's hard to assess myself against people with more pain than arousal so just wondering if there's anyone like me out there who had entrapment causing PGAD that needed operating on...

Sorry to clog up the feed, everyone. Hopefully all this writing might help another person who visits the boards.

Many many thanks for your replies, I appreciate it so very much!!! :D :)
26yo/F/Australia
March 2012 - PN symptoms after long period sitting - PGAD and urinary frequency.
Ceased sitting - total symptom relief after 5 months
April 2012 - Initial palpation of pudendal nerve on examination led to some rectal pain.
May 2012 - MRI: entrapped left pudendal nerve superior to ischial spine and narrowed interligamentous space on right hand side w/ no definite entrapment.
October 2012 - Recommenced sitting and symptoms returned.
Exploring clinical options here and overseas.
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catherine a
Posts: 291
Joined: Sat Sep 18, 2010 4:46 am
Location: Perth Western Australia

Re: Surgery

Post by catherine a »

hi sydneysufferer,

Have you seen this Catalyst program form last month. ABC TV. http://www.abc.net.au/catalyst/stories/3474801.htm


Catherine
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
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Sydneysufferer
Posts: 18
Joined: Mon Apr 23, 2012 3:39 am

Re: Surgery

Post by Sydneysufferer »

Hi Catherine,

Yes I saw this. Thanks to this program I found out that Dr. Vancaillie existed and promptly got in touch with him!

When I first met him he told me I had PN and that I likely would need nerve blocks, botox, physical therapy etc. He said "I doubt we will find anything on the MRI".

Then I came back after the MRI and he turned around completely and said that the surgery route would be the only way to go. I always suspected entrapment only because when I saw Sherin for PT she hadn't found anything remarkably odd with my pelvic floor muscles etc.

Thank goodness for this program - I believe it has helped a lot of people get in touch with Dr. Vancaillie but also PGAD sufferers around the world praised its integrity and non-sensationalism.

Anna
26yo/F/Australia
March 2012 - PN symptoms after long period sitting - PGAD and urinary frequency.
Ceased sitting - total symptom relief after 5 months
April 2012 - Initial palpation of pudendal nerve on examination led to some rectal pain.
May 2012 - MRI: entrapped left pudendal nerve superior to ischial spine and narrowed interligamentous space on right hand side w/ no definite entrapment.
October 2012 - Recommenced sitting and symptoms returned.
Exploring clinical options here and overseas.
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janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: Surgery

Post by janetm2 »

Just to be clear my smaller ligament was cut the sacrospinous which I guess is the SS and I called it SP but not sure recovery from that will work for ST? I also do exercises for back muscle multifides between the vertabrae. Certainly if I can do them you will be able to.
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
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catherine a
Posts: 291
Joined: Sat Sep 18, 2010 4:46 am
Location: Perth Western Australia

Re: Surgery

Post by catherine a »

All the best to Erin who had her TG surgery yesterday. Hope all goes well for her. I'm sure we'll see her post op message on here soon.
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
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Sydneysufferer
Posts: 18
Joined: Mon Apr 23, 2012 3:39 am

Re: Surgery

Post by Sydneysufferer »

Sending positive thoughts Erin's way and hope all went well with the procedure. She is in great hands.
26yo/F/Australia
March 2012 - PN symptoms after long period sitting - PGAD and urinary frequency.
Ceased sitting - total symptom relief after 5 months
April 2012 - Initial palpation of pudendal nerve on examination led to some rectal pain.
May 2012 - MRI: entrapped left pudendal nerve superior to ischial spine and narrowed interligamentous space on right hand side w/ no definite entrapment.
October 2012 - Recommenced sitting and symptoms returned.
Exploring clinical options here and overseas.
Top
catherine a
Posts: 291
Joined: Sat Sep 18, 2010 4:46 am
Location: Perth Western Australia

Re: Surgery

Post by catherine a »

I rang Erin today at the hospital. All has gone well so far. She was in surgery for more than 4 hours. Had bi-lateral TG and will remain in hospital for the time being. She said to let everyone know she's ok. Drains are out and she's able to get up and have a shower but with the help of a walking frame. She's having ketamine and will remain in hospital until such time that the doc's think she can go home. She's been told not to rush things but to take her time. I'll call her again in a few days. She was pretty zonked out but had a good chat. She told me she has about 25 stairs to her apt. so the docs. are willing to keep her in hospital a little longer. Her health Insurance has covered the whole procedure and she will not be out of pocket. Great news for us Aussies.

Catherine
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Surgery

Post by Karyn »

HI Catherine,
Thanks so much for posting Erin's update! Please extend our best wishes and hugs the next time you're able to speak with her. We're all pulling for her!
Kind 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.
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