Surgery did not work

Dr Thierry Vancaillie

Re: Surgery did not work

Postby Ray P. » Tue May 05, 2015 12:24 am

I have not tried botox injections. The second cortisone injection made me much worse, so I am fearful of injections.

Ray
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Re: Surgery did not work

Postby Robbia » Wed May 06, 2015 2:51 am

Had Botox by a colorectal surgeon recommended on this site.As I said maybe the puborectalis muscle wasn"t the correct place. I get no relief from medication .I take tramadol and it doesn't touch the pain. The second dose takes the edge off. I am now in a dreadful state of anxiety that I think that also ads to the pain
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Re: Surgery did not work

Postby river133 » Thu May 07, 2015 1:48 am

Anxiety does contribute to the pain. The past two days had been hell. I could barely walk. I hate days like that. This am I knew the day was going to be the same way. I took a flexeral and a diazapan. I got a bit woozy,but it did relax me enough to help ease the pain. The 3000 gabapentine and 8 tylonal that I have been taking since I am off of the oxycontin help touch it a bit.It will be a year on the 8th of June since off of the opiots. Well,my husband had carotid surgery and they gave him some norco . He didn't like it. That was in Feb. so at times I will take a couple.they are only 5/325 ... I hope to have the pain pump put in towards the end of June if not sooner. I want my life back,to walk the wobegon trail ,to be able to sit , read,knit stand long enough to be able to continue to paint. It is something I started doing when I could only stand. The standing too long is difficult. I try to keep a journal counting my blessings. Write down something each day that I am grateful for. Some days,I do not want to do it because it is so hard trying to stay sane with this thing. I get my head screwed on straight again and remember another blessing. It is so great being able to express feelings here. Who else can understand this but us.
Surgery Jan.05 2011 TG with Dr Antalok. Dr.Chambi May of 2012 showed injury from a fall on back, 11 years ago. My piriformis muscle caused a large amount of fibrosis .My sciatic nerve was growing through the piriformis muscle which caused a bifid p.muscle. . Dr Chambi decompressed the sciatic,pudendal,pfcn ,and peroneal nerves. I hope to have a nuerostimulator put in to help with the sciatic pain that never goes away. Most days are better with the pudendal if I do not sit at all.
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Re: Surgery did not work

Postby stephanies » Thu May 07, 2015 2:45 am

Sorry you have had a bad few days River. Trying to get the anxiety and (for me) fear under control is very difficult. I am not even at a point where I can count my blessings, so kudos to you. I worry most about the effect of this pain on my family, especially my young teenager. I hope you are back painting and knitting soon and that your pain pump returns your quality of life.

Sincerely,
Stephanies
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13.
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Re: Surgery did not work

Postby Pafen » Thu May 07, 2015 5:32 am

Hi,

Just an update. My physiotherapist has told me the main muscle which I have in spasm is the obturator internus from an internal examination. She said the nerve runs through there so with the muscle in spasm it would be causing me the burning pain.

My pain management specialist said to me he wasn't going to perform botox injections without knowing from the physiotherapist which muscles are in spasm. Now that we know it's my left obturator internus muscle, hopefully my next step will be a botox injection there. I will see him in early June.

In the meantime I have been instructed to continue to use my pelvic floor wand twice a week to gently massage any painful trigger points.
Allan.
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Re: Surgery did not work

Postby ezer » Thu May 07, 2015 5:41 am

Pafen, I don't mean to discourage you but I want to warn you of the risk. My obturator and levator were spasming. They were therefore botoxed and released as expected. The problem is that other muscles took the slack and started spasming to compensate. The pain I endured afterward was much worse than what I experienced after PNE surgery.
I know another patient that experienced the same.
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
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Re: Surgery did not work

Postby Pafen » Sat Jan 23, 2016 6:04 am

Ezer,

You were exactly right! The Botox has made my pain worse it seems. I had it done in December and still quite flared up.

It was worth a go I guess....long as things return back to my usual pain levels eventually!
Allan.
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Re: Surgery did not work

Postby Pafen » Sun Feb 07, 2016 2:15 am

An update,

After all this time they seem to think my pain is coming from the sacral nerves and always has. Just lately I have had a lot more sciatica on the same side as my rectal pain.

To be honest when I first developed pelvic pain I got myself checked for a DVT in my left leg because of the leg pain. I ignored this, but this was obviously sciatica all along.

It's only lately since I've had Botox injections which has made my sciatica much worse. I've now been referred to a neurologist for EMG studies on S1 and S2.
Allan.
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Location: Qld Australia

Re: Surgery did not work

Postby Violet M » Mon Feb 08, 2016 6:12 am

Good luck getting this sorted out, Allan. I would be interested to hear how this goes for you and what treatment is recommended if they decided it's the sacral nerve roots.

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.
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Re: Surgery did not work

Postby stephanies » Sun Feb 14, 2016 5:51 am

Pafen,

If your piriformis is very tight this can cause both pudendal and sciatic pain. I read earlier in this thread that you are in your early 30's. I was 33 when I developed pudendal pain, so I understand that it is a tough at such a young age to have to deal with this kind of chronic pain.

Sincerely,
Stephanies
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13.
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