Hello I'm new here.

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Hello I'm new here.

Postby Sophia1234 » Sat May 06, 2017 7:18 pm

Hello everyone,
I'm new to this site but I am on other sites. I have a question being that this has been discussed several times before but I do need advice. I have been suffering for over 16 years now with PN and I've tried so many treatments out there. I was scheduled for cryoablation and backed out for several reasons. For the most part it was fear. Afraid that in the long run I would be wishing I have the life I'm with right now regretting that I had it done. Are there many of you that are happy you had this procedure or are now regretting that you had it done. I'm also scheduled for a phone consultation with Dr. Malan for the stem cell paste and IV infusion. I would love to hear your thoughts on both of these procedures and the comparison. Please, I'm not giving up but as you all must know as the years pass with this monster and prison of a life that we are all trapped in even though you do everything to accept it, years make the signs and symptoms get worse. At least they are for me. Something new and interesting decides to pop up usually once a month and sometimes it will go but most often it likes to hang around a while. Any advice would be helpful. All of my prayers lay with all of us. Praying for pain free days. Debra
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Re: Hello I'm new here.

Postby Violet M » Tue May 09, 2017 6:25 am

Hi Debra,

I do not have personal experience with either stem cell paste or cryoablation but I have researched them a little bit. You may want to consider a general rule of thumb, which is to try the conservative least risky procedures first. From what I know about each of these procedures, there is not much risk associated with amniotic stem cell injections. Cryoablation, on the other hand, is somewhat neurodestructive so in my opinion would be more risky. If you are considering cryo, you may want to ask about trying a nerve block with lidocaine first to see if that provides any temporary pain relief which would give you an idea as to whether cryoablation at the same place along the nerve might possibly prove effective. I don't know if the cryoablation docs require that or even advise that but to me it seems like it would make sense. I wish you the best, whatever you decide.

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: Hello I'm new here.

Postby Sophia1234 » Sat May 13, 2017 11:58 am

Hello,
I'm having trouble replying to you. I will reply to you under my other post. I don't know why. Thanks Debra
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Re: Hello I'm new here.

Postby Sophia1234 » Sat May 13, 2017 12:15 pm

Hello again,
Today my post is going through and I don't know why it didn't in the first place. Hello Violet. I wanna just give you a little bit of my background. I've been suffering with this for over 16 years now. I have had 14 Pudendal nerve blocks. The first one was the diagnostic one and I was 100% pain free for 3 days. All of the rest were temporary relief all were pain free though. I had 2 ganglion impar blocks again almost 100% painfree but only temporary relief. 2 pulsed radio frequency to the Pudendal nerve the first one helped and the second made me a little worse. Then I had to have a partial hysterectomy for I was loaded up with fibroids and they were intertwined in my Fallopian tubes and my uterus was enormous also. I also had a trial run of an electrical external stimulater. It made me worse. The doctor that did the stimulater in my eyes screwed up and did a stimulater at the levels of T8-T12. That also made me worse. Prior to all of this in 2014 I had 3 vaginal surgeries after being misdiagnosed since Pudendal neuralgia is so closely related to vulva vestibulitis. That was my down fall. I was able to live and kinda function before the vaginal surgeries but now I'm completely disabled. I didn't get a definitive diagnosis until March of 2016 for Pudendal neuralgia. At least I know now what I have because for many years the doctors through me into the catagory of vulvodynia. That is such a shame that not enough of us walk around for years not really knowing what is really wrong with us. Yesterday, I had my phone consultation with Dr. Malan regarding the adipose stem cell paste and IV infusion. It seems promising and I'm probably gonna do it. The problem I will be facing is the cost of it. As I'm sure many of us who wanna do procedures like this face. When you are on disability it's very hard to come up with money like that. But there is always a wAy. I say to everyone on this site. Never lose hope and keep fighting. Hope stands for hang on pain ends. I hope you all have heard that before. Thank you for replying to me Violet. God bless us all. Praying for pain free days. Debra
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Re: Hello I'm new here.

Postby Violet M » Sun May 14, 2017 4:58 am

Hi Debra,

It sounds like you have been through an awful lot with so many different surgeries and treatments. I like your phrase -HOPE stand for Hang On Pain Ends.

Dr. Jarnagin told me that some insurance companies pay for amniotic stem cell injections. Have you checked with your insurance company on whether they might cover the costs for you to have it?

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: Hello I'm new here.

Postby Sophia1234 » Wed May 17, 2017 2:06 pm

Hey Violet,
Can you PM me? I need to ask you something very important and I think you may be able to help me.
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Re: Hello I'm new here.

Postby Violet M » Fri May 19, 2017 4:39 am

Sure, I can PM you but you can also PM me by just clicking on my name and send me your question.

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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Violet M
 
Posts: 5464
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Re: Hello I'm new here.

Postby jogom » Thu Jan 04, 2018 3:19 pm

I´m very confused about impar ganglion blocks. Lots of pages i visited say that the chances are very high to relieve pain. But as I see here, most of them fails. I would ask you if you had 2 ganglion blocks succesfull, why don´t you phenolizes that ganglion? I´m afraid that nor the doctors know what happens with the phenolization of the ganglion. It would cause more pain? will you lose some function? I see it as my last resort, because the pudendal block failed. I understand you when you say things get very worst. In fact, that happens to me 3 months ago. My pain just move itself to my rectum, where i can´t find nothing to calm down. No more duloxetine, no more pregabaline or tramadol. I can´t see how can i keep my job and feed my little children. And how can i avoid to ruin the life of my family.
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