Pne injury

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN

Pne injury

Postby polarbear » Wed Aug 10, 2011 4:22 pm

Hi everyone,

In august 2000, at 2:30 pm my like changed for the worse.

I went to see a doctor about a bowel problem and he used a ridged sigmoid scope (12inches of hard steel), and during the exam struck my tailbone. Had coccyx removed 2002amd I became sustatially worse to the point of not being able to sit in any capacity.
Wentn to a few neurologists who stated my problem was pne. They also stated that if you have pne and the coccyx is removed this typically makes the situation worse.

For 11years life has been helll. Can not sit at all and can only stand 20-30minutes at one time. I am isolated to my house 95% on the time.

I have nerve attacks if I sit or stand to long. Sharp stabbing pain in the coccyx region with tingling and numbness in the genitals. These attacks come on within minutes and last for approximately 30 minutes.

Does any one else have knife stabbing pain because of their pne.

Gail
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Re: Pne injury

Postby calluna » Wed Aug 10, 2011 7:42 pm

I think most of us would answer yes to that one, Gail. Although your situation is rather different - I still can't get my head around the fact that they thought removing the coccyx would help you! What on earth were they thinking.....!

Anyway, stabbing pains. Yes, vaginal, anal, clitoral. Sharp like a knife. And yes, brought on by standing too long, by sitting or by generally overdoing things - and also sometimes coming without warning out of nowhere and stopping me in my tracks. My husband has got used to me stopping in the supermarket and hanging on to the trolley, ouch ouch ouch. :roll:

By the way, I thought of something last night, I have mentioned this book all over this forum already, but I am sure you would find it helpful. It was originally recommended to me by a psychologist whom I was seeing for pain management, at first I got it from the local library but then I got my own copy as I was using it so much. Anyway just a thought.

I do hope that you manage to see a PN specialist doctor, I think it is high time that they got a handle on this.
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Re: Pne injury

Postby helenlegs 11 » Wed Aug 10, 2011 10:58 pm

Yes polarbear, you are definitely not alone with the stopping in tracks episodes Calluna and you describe. All nerve related of course although I'm not sure sometimes if they are not muscle spasm related too? ? I've had them last for over 3 hours at 2-10 minute intervals. . . . almost like childbirth contractions,
I did turn to my husband as I was clutching, fiercely on to his arm, and say, 'It's a boy!' but Oh Boy! it's just a dreadful pain in the wherever you are being zapped. Have only had a couple today :)
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.
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Re: Pne injury

Postby polarbear » Thu Aug 11, 2011 4:26 am

Hi Caluna,

Thanks for letting me know that the sharp pains are all apart of the pne. I did undergo a pudendal nerve block at Henry Ford Hospital to confirm pne

There is only one pne specialist in Toronto, which I saw and he also confirmed pne. He told me that surgery is still experimental (Dallas) and he would not recommend at this time. He told me I just needed to mange the pain and not to sit/stand or I would make my condition worse. I am so tired of people telling me to just accept this condition a d learn to live with it . If the doctors wife had pne I bet they would change their tune.

Your right, I should see another pne specialist like Dr.Potter in NY who conducts mr neurograthy to see exactly where the entrapment is. I just have to figure out how to get there.

I willI all also purchase the book you recommended.

Thanks for the continued support.
Gail
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Re: Pne injury

Postby polarbear » Thu Aug 11, 2011 4:35 am

Hi Helen

Thanks for letting me know that the knife like pain is normal and all a part of pne. I also hold my husbands hand, cry.and try to breath through the episode. Your right, can compare pain somewhat to child birth.

Take care
Gail
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Re: Pne injury

Postby alest1957 » Fri Sep 22, 2017 1:20 pm

Hi everyone,

In august 2000, at 2:30 pm my like changed for the worse.

I went to see a doctor about a bowel problem and he used a ridged sigmoid scope (12inches of hard steel), and during the exam struck my tailbone. Had coccyx removed 2002amd I became sustatially worse to the point of not being able to sit in any capacity.
Wentn to a few neurologists who stated my problem was pne. They also stated that if you have pne and the coccyx is removed this typically makes the situation worse.

For 11years life has been helll. 24 hour urgent care Los Angeles Can not sit at all and can only stand 20-30minutes at one time. I am isolated to my house 95% on the time.

I have nerve attacks if I sit or stand to long. Sharp stabbing pain in the coccyx region with tingling and numbness in the genitals. These attacks come on within minutes and last for approximately 30 minutes.

Does any one else have knife stabbing pain because of their pne.

Gail
Yes polarbear, you are definitely not alone
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