Pain free from Pudendal Nerve Pain after Amniotic Allograft

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Pain free from Pudendal Nerve Pain after Amniotic Allograft

Postby Dana50 » Thu Nov 02, 2017 7:24 pm

My name is Dana Stewart and this is my story of both my nightmare and my happy ending. I suffered from chronic excruciating chronic pudendal nerve pain for almost 3 years though I didn't know what it was for most of that time. I just simply knew that in one day I was in more pain that I had been in my life and it was with me every waking moment and that every aspect of my life was slipping away with every passing day. Like most all who suffer from this condition, I was unable to receive a diagnosis or any help for my pain from my doctors. And also like most, I researched myself, and added a team of family member to my research team, for the duration of my pain. I would find condition after condition that seemed to fit in many ways and didn't fit my symptom at all in others. Along with doing every pelvic floor exercise and massage that I could find on the internet and trying to continue doing yoga, I also spent a small fortune trying the remedies that others suggested for the conditions that I thought might be what I was experiencing. I finally broke down and explained it all to my family doctor and he did his very best to help me.I will never forget the day that I received an email from my best friend with an article about a woman winning 16 million dollars in a law suit after her pudendal nerve was damaged during methods used on her during childbirth. I completely skipped the lawsuit details and googled that two words that I had never seen or heard in my research or from my doctors, "pudendal nerve."
My gyno immediately did trigger point tests on me and agreed with "my" diagnosis. In the meantime, I had swapped chiroprators and thought that I had found a miracle there only to be short lived. One afternoon and evening of no pain! I actually found myself crying tears of joy! My gyno finally found me the right therapy clinic to go to and once again, I thought I had found my miracle but it too was short lived. There was a bit of relief, one glorious afternoon and evening of being pain free and then the progress kindof halted. I even felt that though they didn't want to admit they felt the same as they were really trying to get me to lower the number on my pain scale. Speaking of the pain scale, whenever asked about my pain from 1-10, I always answered 15-20. I have a very high pain threshold, that is not to boast as that can also be a dangerous thing, but that is how bad my pain truly was. By this time, I had gone from taking 1 pill for my thryoid each morning to taking so many medications that I had to create a system to make sure that I took them and of course only took them as directed. These meds also included narcotics which even when taken as directed would only take the edge off but I could at least make it to my son's ballgames as long as I had someone to drive me.
I could identify 5 different types of pain and most days all 5 worked together and for all intents and purposes I could not function. I reserved all my strength for doing what I could for my son. Who, thankfully, was 12 at the time when this started so at least I wasn't diapering, bathing, feeding and such. By this time, I had already long given up my role in the children's ministry at our church and finally got to the point that between the pain and all of the mental effects of that pain I couldn't go to church at all. I literallly would have lost everything had it not been for the support of my friends and family and the financial support of my parents. Finally one day, my mother instructed us all to get on our separate devices and find a place to take me even if it was halfway around the globe. Within an hour, this is after years of research, my father found the Center for Pelvic Health in Franklin, Tennessee which is just under two hours away from me. I could not believe it my answer had been only two hours away all along! I made an appointment with Dr. Jarnagin without even researching it myself!! I did the research after the appointment was set. I literally was overcome by hope and that adrenaline alone allowed me a bit of strength to do a bit more on some days. And, I also just gave in to the narcotics knowing deep in my heart that soon I would not need them at all!
I could go on and on, and will be happy to answer any questions and provide more details to anyone who wants to reply to me, but basically my happy ending is that at the end of June Dr. Jarnagin treated me with the amniotic allograft injections. I began to improve by week two, which is very atypical, and then had a really tough third week and after that I just got better and better everyday. My nerve is healed and I spend my days almost pain free. I say almost, because I am still dealing with a muscle issue that is aggravating some days but with massage and excercise that is getting better as well! Most of my days are truly pain free!!! I have now begun the journey of getting back!! God Bless You All!
Dana
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Re: Pain free from Pudendal Nerve Pain after Amniotic Allogr

Postby Violet M » Fri Nov 03, 2017 5:50 am

Hi Dana,

Thanks for sharing your story. Glad to hear you are feeling better.

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: Pain free from Pudendal Nerve Pain after Amniotic Allogr

Postby April » Fri Nov 03, 2017 7:35 pm

Hi Dana,

That's wonderful! And thanks so much for the update. Were there any side effects to this procedure? Were you able to go off your pain medications? Will you need follow-up care or another injection?

Thanks,
April
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Re: Pain free from Pudendal Nerve Pain after Amniotic Allogr

Postby Dana50 » Sat Nov 04, 2017 4:55 am

April,
The only side effect was numbness, which to be honest was glorious, for about 3 days. The numbness was due to the Markaine injections give along with the allograft. Some people opt to have Botox with it but insurance doesn't cover it and after 3 years of barely being able to work, I could not afford it. I was instructed to wear pads for bleeding and possible urine leakage. I have the most minimal spotting and even though I was numb simply by going to the bathroom a bit more often I did not experience any leakage at all. The healing period for the allograft is 6-8 weeks and by the end of that time period I was off all pain medication. A few weeks after that I went off Lyrica and about a month ago I came off my Cymbalta. Becoming free from that horrific pain has been one of the biggest blessings of my life and coming off all the medication was thrilling as well! I am now back to 1 synthroid for my thyroid each day. After my first follow up visit the nerve barely reacted to the trigger point tests and Dr. Jarnagin gave me permission with encouragement to return to my yoga. When I went for second follow up visit there was no reaction from the nerve at all from any of the trigger point tests! There should be no reason for me to have a second injection as the allograft is not a bandaid like a nerve block or something similar. It actually heals the nerve. I have pdf files with info about the amniotic allograft itself, the 90% success rate from when the time the first patient study was put out and about Dr. Jarnagin himself. If you would be interested in reading them just let me know and can email them to you. If you have any other questions or I can be of any help whatsoever to you please do not hesitate to reach out. In order for good to come from everything I have gone through and reading the stories in my research of people who have gone through it for some much longer, I have a strong desire to help others with this horrible condition in any way I can.
Have a fabulous day and God Bless!
Dana













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Re: Pain free from Pudendal Nerve Pain after Amniotic Allogr

Postby Violet M » Sat Nov 04, 2017 10:03 pm

Dana, I would be interested in seeing some of those articles/pdf's. I will PM you my email address.

So did you start yoga yet? Please take it easy and start out very slowly. When I started exercising again I did so very slowly adding one thing at a time until I knew what was OK and what wasn't.

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: Pain free from Pudendal Nerve Pain after Amniotic Allogr

Postby April » Sat Nov 04, 2017 10:25 pm

Thanks so much, Dana. Such wonderful news! Yes, I would be interested in reading those pdfs if you don't mind sending them to me as well. I will also pm you.

Many thanks,
April
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Re: Pain free from Pudendal Nerve Pain after Amniotic Allogr

Postby Pamdietrich » Thu Nov 09, 2017 2:54 am

That is awesome news! I am interested in your research as well. I am ready to try anything. Did it take long to get in for an appointment with him? I am in Wisconsin so it would be a flight for me but one zi would be willing to make.
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