I'm back :(

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Positivepoppy
Posts: 174
Joined: Mon Feb 24, 2014 2:49 am
Location: uk

Re: I'm back :(

Post by Positivepoppy »

Just a quick question to everyone I've been repeatedly using a heAted wheat bag to mask the pain and covers that area. Karyn as suggested heat agrivates nerves has anyone else experienced this. Should I be using ice only on that area? I wish surgeons gave a rule book after they have finished with you! Thanks all
Barb
Posts: 92
Joined: Fri Aug 31, 2012 3:14 pm

Re: I'm back :(

Post by Barb »

Hi Positivepoppy,

I posted a reply to your question on the other thread "pudendal nerve decompression surgery" . Let me know if you see it. Maybe others will chime in as well on their experiences.

Barb
12/10- Vaginal prolapse surgery. Surgeon used mesh. Had incredible complications.
11/11- mesh removed at UCLA.
PT diagnosed hypermobile SI joint
5/13- Potter MRI.... pelvic floor scarring causing entrapment of the inferior perineal branches and the dorsal nerves to the clitoris.
9/13- Prof Aszmann discovered entrapment at ST/SS ligament causing more pain than dorsal nerve....he opted for TG surgery. Also had injection to calm down inflammation at ischial tuberosity. Still healing
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Violet M
Posts: 6679
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: I'm back :(

Post by Violet M »

Positive Poppy,

I appreciate your ability to be very diplomatic. 8-)
Positivepoppy wrote:Just a quick question to everyone I've been repeatedly using a heAted wheat bag to mask the pain and covers that area. Karyn as suggested heat agrivates nerves has anyone else experienced this. Should I be using ice only on that area? I wish surgeons gave a rule book after they have finished with you! Thanks all
I have heard the same thing about heat aggravating nerves. In my own experience, I used whatever felt the best and I have made a brilliant recovery. Especially after surgery, I used alternating heat/ice because my understanding is that with hydrotherapy, heat brings fresh blood to the area by dilating blood vessels while cold constricts the blood vessels and reduces inflammation. So I always ended with cold. http://www.unh.edu/health-services/ohep ... drotherapy

I found alternating hot/cold sitz baths to be very soothing and often it kept me from going insane. It also helped me get to sleep at night because it brought down the pain levels. Hope it works for you too. ;)

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Positivepoppy
Posts: 174
Joined: Mon Feb 24, 2014 2:49 am
Location: uk

Re: I'm back :(

Post by Positivepoppy »

Thanks that makes complete sense. The heated wheat bag has provided so much comfort though repeated use has turned my inner thighs a livid shad or purple so alternating heat and ice would give them a welcomed break. I have hot/cold showers but will now try baths instead, I guess it really is trial and error?
Hope you don't mind me asking but how long after surgery did you return to work? I'm desperate to return but my job is physically and mentally demanding and at the moment the majority of my days are spent in high levels of pain lying down. I'm hoping to maybe try a phased return start of June then return in Sept full time after the school summer holidays?
Thanks
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: I'm back :(

Post by janetm2 »

Positive Poppy,
Everyone's recovery is unique but for me I had surgery (left TG by Dr Marvel in the U.S.) in May 2011. I started back to work 2 hours a day in Aug 2011, by holidays Nov/Dec 2011 up to 6 hours. I may hav been able to get to 8 hours aday by Christmas but wanted to try to enjoy the holiidays. I think Feb or March I made it to 8 but then was still on drugs etc. Again I decided to limit and use Family Medical Leave Act Leave Without Pay so I could just work 6-7.5 hours a day until I retire in 2016. I eventually got off the constant meds with some great acupuncture but decided taking something at night really makes it easier for me. Between my foot pain and the PN I am just trying to get by until retiring. Physical therapy, acupuncture and water therapy helped with pelvic alignment issues and I am doing better these days. I hope you are able to get back to work this summer and fall just do not overdo it and mostly listen to your body for recovery patience has a new definition with this condition but it can pave your way along the journey. Good luck
Janet
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.
Positivepoppy
Posts: 174
Joined: Mon Feb 24, 2014 2:49 am
Location: uk

Re: I'm back :(

Post by Positivepoppy »

Thank for such a positive post and delighted that albeit cautiously you have been able to return to work and rebuild your life. To date apart from gentle swimming I have told it is too early for PT etc but desperate to try anything. How soon after surgery did you have acupuncture, PT ?
Thank you for responding and your post has given me renewed hope though I do appreciate a recovery times are different and everyone s journey is unique.
Take care
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: I'm back :(

Post by janetm2 »

It looks like 5 or 6 weks after surgery I started PT per Dr Marvel's direction, I think nerve glides started at first or maybe appointment at 8 weeks post op, again per Dr orders. I did not find the acupunturist until I found another gyne that knew about PN to help me. 18 weeks after surgery I started acupuncture and the first visit was amazing - he put needles all around by scar and completely broke up the scar tissue, PT was impressed! Hope your recovery starts moving along. Take Care. Fyi I will be away from the forum unless I figure how to access from my cell phone. Will check back in a week or so.
Janet
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.
bma
Posts: 24
Joined: Sun Aug 25, 2013 5:26 pm

Re: I'm back :(

Post by bma »

It is difficult to argue with a one-sided view on PN / PNE. Does not exist only this disease. The pelvis has several nerves: Fermoral, cluneal, sciatic nerve, obturator, cauda equina nerves. Besides a number of structures that cause pain, such as the sacro-iliac joint and the muscles in the region. I feel void of a focus on neurology and less on PN. A nerve can undergo various types of injury and only one type is entraptment: neurapraxia, axonotmeses, neurotmesis, chemical injury, injury by infection, traction... These are the classifications from neurology.

That's why the surgery does not work for everyone. With respect to the ligaments. They are essential to the balance of the body. As Ali said, Cadaveres not feel pain. I am not advocating against surgery, a small number of patients may benefit, such as those with ischemic compression injury. But I dont see anything around 80%. Unfortunately. To have a surgery to live a bedridden life is not for me. But every one make your choice according to your case.

Nerve damage:
http://www.hopkinsmedicine.org/neurolog ... njury.html
- Blocking done by Dr. Luciano Braun, Brazil
- bLock in piriformis - no response
- Physiotherapy, good response, 50%
- Therapy with low lidocaine infusion, good response .30%
- Surgery? Perhaps. But I'm incredulous.
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