post-op PNE success

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post-op PNE success

Postby aaron_m03 » Thu Apr 18, 2013 9:25 pm

Hi. My name is Aaron and I am 33 years old. I've been to the Mayo Clinic for diagnosis and Houston for surgery in 03 and I've been wanted to say something to everyone for about 8 years now...and this is the first time I have faced the challenge. For me, my surgery was quite successful. I have a few remaining symptoms that I just began dealing with after running from them for the last 8 years, but like I always say, compared to the pain levels I was at prior to surgery, this is nothing. But its not nothing--I'm realizing more and more. How is everyone?
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Re: post-op PNE success

Postby Violet M » Sun Apr 21, 2013 9:26 pm

Hi Aaron,

Thanks for facing the challenge and coming back to say hi. I think I might remember your story but I'm not sure you are the same Aaron. Did your dad used to post on the forums? I think most of our members from back then have moved on with their lives but when one of them comes back to tell us how they are doing it is a huge inspiration.

Glad to hear you are able to keep your pain levels low. I had surgery in '04 and I consider it successful, but like you I am not completely cured. I'm able to work and have a great life though. I totally understand what you mean by running away from the symptoms for 8 years.

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: post-op PNE success

Postby aaron_m03 » Tue Apr 23, 2013 6:52 am

Dear Violet,

Yes! that was my father who used to be quite active on here. I have little memory of it, but I cant believe you remember that! So cool!

Interesting. And congratulations on your recovery as well. I hear you too. I worked for a long time, emotionally, and I thought I had finished this work but I was running the whole time and still am. I recently looked at the reports that my dad spearheaded. Its weird to have such a long expanse of time pass--documented on paper--and not be able to account for it. I keep trying to make sense of the experience and organize it into a rational way. This has not worked so far:)

Thank you for your reply and kind words. Im curious about this running away thing and how this affects and effects one's daily actions (choices) in a conscious and subconscious way... Making any sense??? This is what I am trying to put together still. Feeling alone (can't talk to anyone about this stuff) and I believe you guys know/you know what I am talking about...

Warm regards and appreciation,

Aaron
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Re: post-op PNE success

Postby catherine a » Tue Apr 23, 2013 9:01 am

Aaron, I too had PNE surgery with Dr. Bautrant in 2007. Like most of us, I thought I would NEVER recover from this horrendous pain but like you and Violet, I have recovered very well. This is my 6th year after surgery and I am still seeing improvements even after all this time.

It's so good to hear your story and that you're doing well. You'll never know just how much this means to others who are suffering terribly.
Thank you for logging in again with your update.

I too am not YET 100% cured but for the past two years or so I've been around 80 - 90% better. These past few months have seen more improvement and I can confidently say I'm probably up to 95% better. I recently had to give up full time study though as the pressure from sitting all day long in lectures was just too difficult. So there is still that little bit of avoidance of sitting too long. I'll be forever grateful for those who have kept me strong and positive. Likewise, I hope our stories of success will inspire others never to give up.

For those who think their surgery hasn't worked.....hang in there. Give it time and don't rush into doing surgery a second time too soon. Some of us need many years to recover. Some recover quicker than others. It has been 9 years since the onset of my PNE and 6 years since I had nerve release surgery. I have my life back.

Well done Aaron. Keep up the good work. You are still young and you have a great future ahead of you.

Catherine
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
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Re: post-op PNE success

Postby Violet M » Wed Apr 24, 2013 4:24 am

Aaron, it would be impossible to forget you and your dad, Les M. Your dad's posts and the story of your successful surgery were such an inspiration it gave me hope to go on.

I think I've suffered some from post traumatic stress disorder -- maybe you have too? Sometimes in the night I wake up in panic and I will never be completely free of the fear that the worst symptoms might come back. I don't talk about it to anyone either because it's just not the type of illness you want to talk to other people about. The only people I have ever found who truly understand are other PNE patients. You are not alone and if you ever want to talk let me know and I would be happy to speak by phone....although I might not understand as well as another guy would.

Last your dad posted, I think you had gone back to school and were doing quite well. I'm sorry if things haven't gone as well since then.

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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Re: post-op PNE success

Postby nyt » Wed Apr 24, 2013 12:22 pm

Thanks for posting your improvement. It is always so wonderful to hear!
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
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Re: post-op PNE success

Postby helenlegs 11 » Wed Apr 24, 2013 12:25 pm

Yes thanks Aaron, this whole thread makes wonderful reading. All 3 of you posting a wonderful %age recovery post surgery.

Thanks again :)

Helen
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: post-op PNE success

Postby aaron_m03 » Thu Apr 25, 2013 11:42 pm

These responses; I really needed that. Thank you all. Gotta say, it has been incredible hearing everyone's completely relevant responses and hello's. We are as tough as they come. It has taken me these 8 years to be ready to turn around and look back at myself. I did not think anything like this type of communication/understanding with others was possible. But it just goes to show one of my fav quotes, "The impossible ceases to be impossible only when you believe it is possible." Been kind of speechless lately, hehe, and I cant communicate this feeling to family or friends!!!

It has been wonderfully overwhelming hearing how much my father's postings and my story influenced even a few, and those still here. I'm still processing this whole thing. Violet, I have been thinking a lot about the ptsd aspects of pne (which I def. have) from your response and I think it is what I call "the fear". I thought my definition was referring to the panic one can feel with these neuropathies and it made me realize the panic is--exactly as you put it--related to a fear of experiencing higher thresholds of pain than currently. So, panic is related to fear, but extends to a fear of pain, in essence. Maybe this sounds very simple but it was a revelation for me. Really interesting...and helpful. Catherine, thank you. I thought your statement about sitting and not being able to sit for long periods is the truth and one of my biggest stumbling blocks.

Currently figuring out the general rules of what I can/should communicate to others like friends and family who have no pne or "knowledge" of pain/life that we have. Specifically friends and family are the issue. I cant figure out what (if anything) I should say and what I cant. I know I cannot communicate my pain or experience of pne to anyone. Moreover, if I let go of the need to tell family and friends, how are they to know how I am? These questions are challenging, quite a bit so.

Those in pain (myself included)--who push their mind, body and spirit to keep going--accomplish the impossible every day. Here is to the impossible...

Strength & Honor

Aaron
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Re: post-op PNE success

Postby Dave » Fri Apr 26, 2013 12:47 am

Aaron, how long was it before you could tell that the operation was successful, by that, meaning things were becoming better than before the surgery?
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Re: post-op PNE success

Postby deBBieW » Fri Apr 26, 2013 2:50 am

Hi Aaron,
Your words are very inspiring, thank you.
Panic, fear, pain.... oh yes I can relate.
I always say when in pain - When is it going away, or back down??? and then.... When it's gone, or down, when is it coming back???
A vicious cycle, never free really. I'm always WAITING for something to happen.

I'm really working on meditation, and trying to keep that central nervous system calm, very, very difficult for me.

Best of luck, thank you.

Debbie
Vag pain, leg burning 3/11, SIJ inj 7/11, Pelvic PT, Chiro/acupuncture,
2-CT pudendal blks 11/2012, did help, less deep vag pain
Potter MRI 04/2012 - Scar tissue/thickening at SS/ST, scar in Alcock canal -bilateral,
Hibner 6/12 suggests Botox (didnt do), 8/12 more pelvic PT w/ dry needling
Gabapentin 1800 mg, Lyrica 200 mg, 5mg valium, vicodin as needed
Trying to get rid of central sensitization burning pain in my legs, Valium seems to be helping
Looking into more mindfulness options. . . . .
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