Can someone give me there expert opinion on my case please

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Re: Can someone give me there expert opinion on my case plea

Postby Violet M » Thu Apr 27, 2017 5:19 am

Hi Frank,

I did the sitz baths 4 times a day. For the most benefit you need to sit 2 minutes in the hot water, then 30 seconds in the cold water and alternate back and forth 4 times, ending with the cold water. It's not an immediate cure but I believe it helped with my healing.

Yes, Tracy Sher has an excellent reputation as far as I know. I think she helps teach other PT's how to manage pudendal neuralgia patients. There are also some excellent PT's in California if you do decide to go back there. PT is not an immediate cure but you will most likely start to see improvement little by little within 6-12 sessions if it's going to help.

I hope you can get back to your cat soon. ;)

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: Can someone give me there expert opinion on my case plea

Postby Frank » Tue May 02, 2017 5:24 am

Hi violet,
Thanks for the kind words. Yes I am dying to get back to my cat and my old life. It was perfect for me. I had worked hard for years to create the lifestyle that was just right for me and tons of fun. Well now that's all gone. It is extremely har to get through the days of wondering if it's going to be my life like this now with no way out. It seems like i have a very slim chance of getting my life back, and every month that goes by that it doesn't happen I feel like this is becoming my new reality. My worst nightmare is where I am living and how I am living. I live it now. Everyone has something that they fear the most and what I feared for many years while I was working hard and living and having fun is exactly the way things are now. My worst nightmare has come true. My life is exactly like a twilight zone episode of rod serling. Where in the end the people are always left with some kind of extreme suffering forever. Like the one where all the guy ever wanted to do was read his books and the world ended and it was just him and there was a big pile of books and he stepped on his glasses.

I tried the sitz baths and they help. It's like I said about taking a shower and knocking it down. Hopefully there will be some kind of healing that actually happens. Another thing that is actually helping me the most is the compounded creams that I just got. It's neurotonin, ketamine, lidocaine and a few others. I am hoping to be able to cut out my gabapentin by mouth and just use the cream and the other natural things that I do for it. I have a question for you. Do you know if the nerve is actually compressed or entrapped then is there any way to fix it without decompression surgery? Also is there any way to tell? I have the symptoms that the Nantes team put out for pne and am scared as hell plus an accompanied symptom .
Frank
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Re: Can someone give me there expert opinion on my case plea

Postby Violet M » Tue May 02, 2017 5:34 am

Frank, I think it depends on whether the nerve is entrapped by ligaments or whether it is entrapped in scar tissue or fascia. Another variable is whether you have a pelvic misalignment that can be corrected with manual therapy or PT. There are just too many variables to say for sure one way or the other whether an entrapped nerve can be released without surgery for a particular person. Many people try conservative treatments first to see if those will help and then if all else fails they go for surgery. Maybe your PT can give you some insight as to whether or not you might have an entrapment.

There was a time I saw no hope of getting my life back so I understand how things can look pretty bleak when you are down in the worst of PN. I do wish for you some better days ahead. It's a hard fight getting through this so try to stay strong and fight through it. Keep researching your options and follow your instincts on what you think will help you the most.

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: Can someone give me there expert opinion on my case plea

Postby April » Wed May 03, 2017 9:06 pm

Violet,

You said above that you thought the possibility of a non-surgical recovery from pne depended on whether the nerve was entrapped by ligaments or whether it was entrapped in scar tissue or fascia. Which of those two has the most recovery success without surgery? You had entrapment in the ligament, right? So, I'm guessing the other type of entrapment (in scar tissue or fascia) is the one that can be most easily dealt with without surgery?

Thanks,
April
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Re: Can someone give me there expert opinion on my case plea

Postby Violet M » Sat May 13, 2017 3:58 am

I don't know if this would bear out in real life but theoretically I think that the nerve could be freed surgically from either fascia or scar tissue but the challenge with scar tissue is that it can return after surgery to remove it. I think it would be easier to free the nerve from either fascia or scar tissue non-surgically than from ligaments but I could be wrong.

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: Can someone give me there expert opinion on my case plea

Postby Frank » Sun May 14, 2017 6:32 am

I continue wonder if my nerves are damaged or compressed or whatever? No way to know I guess but if my symptoms stay the same then that tells me that something is terrible wrong. These symptoms are telling me that they are damaged unfortunately. I don't u derstand how this could have happened from a fall like that. The pain and pulling that runs up by the balls and to the penis on booth sides tells me something is wrong. It is made worse if I try to squat or sit or lean over to pick something up on just try to sit and lean forward to tie your shoes. Pulling and pain mainly on the right side up through the paraneium and balls and pain at the base of penis. My pt makes me feel better afterwards for a couple of hours or so but isn't fixing the problem. I am goin tot go see Tracy sher in a month or so. I sure hope this helps or points me into the right direction of healing because this is just the most miserable thing I have ever experienced Or my worst fear ever that I would have never thought about. Back in the dream world. I continue to and will always deeply worry about my self and all the unfortunate souls on this site. I pray that we can all live in the pain free dream world again someday
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Re: Can someone give me there expert opinion on my case plea

Postby Violet M » Mon May 15, 2017 5:52 am

Frank, for some people there is something that triggers their pain, like a fall, and they develop pain signals to the brain that don't calm down even after healing has taken place. In that type of situation, mindfulness or the mindbody approach might prove helpful. You can read about it from Ezer's most recent posts on the forum.

Does your current PT do internal work? If so, I think that's a good sign that you feel better even for a short time after PT. I used to get terrible flare-ups after PT.

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: Can someone give me there expert opinion on my case plea

Postby Frank » Mon May 15, 2017 6:31 am

Violet,
No my current pt doesn't do internal work. I am going to see Tracy sher for that and dive into the pelvic floor more and see what she thinks about my case. Currently doing tons of stretches and exercises and covering the hip pt as good as it could be covered. Trying to strengthen the glutes now and hamstrings. The torn friction feeling by the paraneium that is triggered when I walk is very agrivating. When I lean over I notice if I cock mt knees out to the sides more then it minimizes the pulling and pain some. It is extremely hard to concentrate or do anything, and have confidence with this kind of pain in this area of the body. More time will tell I guess.
Frank
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Re: Can someone give me there expert opinion on my case plea

Postby April » Wed May 17, 2017 5:29 am

Thanks, Violet, for your take on the possibilities of surgery success for the different types of entrapments.

April
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Re: Can someone give me there expert opinion on my case plea

Postby Violet M » Fri May 19, 2017 4:46 am

Frank wrote: When I lean over I notice if I cock mt knees out to the sides more then it minimizes the pulling and pain some. It is extremely hard to concentrate or do anything, and have confidence with this kind of pain in this area of the body. More time will tell I guess.
Frank


I know, it's hard not to think about it. Hopefully Tracy will be able to help you.

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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