reality has set in.

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Re: reality has set in.

Postby Violet M » Mon Dec 31, 2012 5:42 am

Hugs to you too, Ellie.

Some people have had good pain relief with Botox. You would probably have to get it every few months but if it gives you good pain relief it would be worth it. That's too bad about your foot though but thankfully it will heal quickly compared to PNE. ;) I hope the pain clinic will be able to help you after all your years of battling PN.

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: reality has set in.

Postby Meliora » Tue Jan 01, 2013 4:33 am

Reality - I understand. I have multiple health issues and reality is just plain hard. Have you considered a pain modulating device like medtronic? Perhaps that would give you relief. Some pain management doctors implant these after a trial run. I have decided if surgery fails me, I will probably get one. I am sorry you are having rough time, I totally get what that is like. Happy New Year regardless.....may you be blessed in 2013.
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Re: reality has set in.

Postby river133 » Wed Jan 02, 2013 12:00 am

Thanks Violet, I would really like to try the botox. Will keep you posted. Let's keep hugs going for everyone. :D It is so great that you continue to moderate .you are of so much help.
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: reality has set in.

Postby river133 » Sat Jan 05, 2013 4:16 pm

Well I did find out about the botox injection. They do a generic of botox,and insurance pays for it where botox does not. We will talk about that the next appointment.
The MRI showed severe pinching of the sciatic nerve on my left side. So they injected 3 steroid shots on my left hinder. Well that was also for lower back- I do want to mention this to Dr.Chambi. Evidently he did not go that close to the spine,but he actually specializes
in sciatic nerve.
There is a partial tear of the attachment of the gluteus minimus as well as the gluteus medius to the trochanter bilateraly . Not real sure what this means. That is the greater troc.. still coming down from oxy and vicadin. Doing it slowly. Right now at the moment. my left sciatic is bothering me more than the pudendal,but then I am lying down. Broken toe bon :D e may take some time to heal being it is so hard for me just to chill out and lie down. Ellie
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: reality has set in.

Postby river133 » Mon Feb 25, 2013 2:51 am

My last surgery was In Oct, so I figured I could get myself wrapped up and go for a nice walk. Put the cleats on the bottom of my boots, just as I was coming home and turned at the back door. Kerplunk ,down I went . This was on the 2nd of Feb. My whole body landed on my ankle. I broke my fibula. I had surgery on the 15 the of Feb. I have fallen numerous times,on my back,hitting my tailbone. I have a kneel walker. That has tipped me over a few times also.
I was in the hospital for a few days,but they couldn't keep me being they were just giving me pain meds and showing me how to use the knee walker.
The roles have reversed here. Hubby is waiting on me. We are both trying but we do get a bit testy with one another. :roll:
Tomorrow some pt's are coming in to strengthen my legs. Someone is also coming in to clean the house. The broken fibua does not give me as much pain as the PN.
I had pressure blisters and they had to settle down before surgery due to possibilities of infection.
In the mean time my best friend passed way. So life goes on a day at a time. I am a bit Leary of the. PT's . That are coming on over. I may have to explain what PN is. I may just have to wait until I can get out to walk when the snow leaves us. Attitude is more important than fact someone told me years ago.All I can do is try. If we don't laugh we cry. Hugs to you all. Ellie
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: reality has set in.

Postby helenlegs 11 » Mon Feb 25, 2013 1:43 pm

OOOh Ellie :( I am so sorry that this has happened to you! You poor thing, plus the sad news about your best friend, that must be devastating.
I wouldn't worry too much about the PT. It has to be done of course but in relation to telling them about PN maybe you can explain the problem and the sitting issues etc that you have. Then if they need any more info print out something from Hope? to give them a better idea.
For the explanation just say something like I have a trapped pudendal nerve(s) in my pelvis which causes neuropathic pain. It worsens when I sit. You could leave it at that and not go into all of the ins and outs. You never know there may already be something in your notes about PN for them OR They may already know about it?? I'm putting odds against that however, but you never know.
I'm sure they will be able to give you an exercise regime that is tailored to your needs.
It's lovely that someone is coming in to clean.
We have had snow all weekend. It won't last as it is fairly mild today. It was Tilly's first day out after her injections, we went down to the beach, after having her micro chipped but it was a bit windy. She was more interested in the puppy treats in my pocket than the sand and sea (freezing cold North Sea, so I don't blame her) but at least she has had the introduction.
It will be wonderful when the weather changes. The beach is just a short drive away, about 4 miles so I just need to make sure she walks well on the lead and comes back when called (puppy treats again ;) ) I let her off her lead on the beach, she was no trouble at all. . . . just kept feeding her ;) and she didn't stray too far. She did fall into a pool tho' and came home like a drowned rat.
How will you manage with your dogs?
Sorry all, should probably have put much of this in a PM but had started and wanted to send it asap.
Hugs back to you,
Helen x
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: reality has set in.

Postby Violet M » Thu Feb 28, 2013 5:25 am

Ellie, given all you have been through you certainly have a great attitude. You are like the cat who has 9 lives and never gives up! I wish you the best with the healing of your leg and hope you will be back on both feet again soon. ;)

Take care,

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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