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Subject: "PHN has MOSTLY GONE AWAY!"     Previous Topic | Next Topic
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Conferences Neuralgia / Pain Topic #401
Reading Topic #401
Member since Mar-10-07
24 posts
May-18-11, 08:05 PM (CST)
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   Hello all- First, let me apologize for taking so long to come back and write. I could say a lot of things as excuses ,but nothing would make it ok. But, I was reluctant to write until I could at least have my conclusions tested by time.

As many of you know, I had Pudendal Nerve surgery by Doctor Filler in Los Angeles. He is not part of any network and after 2 years and appeals, the insurance company finally paid up. They had agreed to at the beginning and then changed the rules on me.

To those that do not know me or my earlier posts, I suffered daily, every waking hour, with intense neuropathic pain. Constant sunburn and pins and needles on every surface below my waist. Jeans were torture as was sitting at work. I tried everything. Acupuncture, Trigger point therapy, high dosages of Valtrex, Cymbalta(scary), Neurotin, Injections, etc... Nothing worked. My life was really looking bleak...thought I would have to quit work, could not have a relationship, and no one could truly understand how it actually felt..except those in the same boat.

Like many of you, I went back and forth about whether it was Herpes or a spinal problem. None of the injections worked. Doctors where split about 50/50 on it being Herpes related or spine.

I have never had a visible outbreak ,but my antibody test was 5+...that is past the limit of the test. And like I said, the pain was nonstop.

So after reading about Dr. Filler(very impressive person) and the "experimental" surgery, i said what the hell. The worst that could happen is that I am in the same place as before. And, he believed it was the nerve. But, I think he likes doing the surgery since it is "new". The more the merrier for making his case. And, it is very expensive.

So after the surgery, I felt the same. It was a pretty depressing time. Hope is the last thing I clung to and over time the chronic pain pretty much took it away. But, my other doctr said results from these surgeries sometimes take time.

Then, I met a girl on the Positive Singles site. We have now been together for 1.5 years and are going to get married....makes the situation more bearable.

Now, the good news. Whether it took a long time for the surgery to work or not, I am now 95% pain free most of the time. But, I truly don't believe it was all surgery related. When my GF has an outbreak, within a few days, the PHN comes back something fierce for me and it lasts about a week. I take Valtrex immediately. I truly believe that this is my personal manifestation of an outbreak. What I do believe is that by clearing the tightness around the nerve, it is no longer as irritated as before. Dr. Filler said that the operation took almost 2 hours more than normal because there was so much tissue attached to the nerve...It was very tight in there. But, I believe that the original and underlying cause of my PHN was the virus.

I am never 100% normal. I always feel something wrong down there. But, I can now talk to someone without my head thinking about the pain. And, I am able to sit.

I know this doesn't give a definitive answer for all of you. As all of you know, this is an unknown area even for most doctors. I think many of us know far more than most of them. But, I hope I have given you all some hope...it is the most important thing. My heart goes out to every one of you who is suffering with this terrible disease.



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15328 posts
May-18-11, 10:16 PM (CST)
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1. "Congratulations, Mark.. Thanks for reporting."
In response to message #0
This sounds like a success story on a couple of levels, especially on finding someone to share your life with. Persistence paid off for you.

"Do the Right Thing. It will gratify some people and astound the rest." - Paraphrased from Mark Twain

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Member since Jul-15-09
100 posts
Jun-02-11, 10:45 PM (CST)
Click to EMail JG440 Click to send private message to JG440 Click to add this user to your buddy list  
In response to message #0

I just wanted to say that I went through the whole pain issue when I was dealing with phn.I thought it would never end and it was constant pain or like an itching/ burning feeling everyday.I still do not know how I dealt with pain on that level on a daily basis.

I also went to quite a few specialists and they did a number of different tests. Nothing really worked and the pain would always come back. This is when I really began to believe that it was not necessarily the pudendal nerve causing all the pain or the muscles spasms. I realized over time that it had to have something to do with herpes and in someway I cannot explain, the virus had a way of irritating down there and just making it go crazy. I once read in a book that if the virus begins to act up close to the pudendal nerve, it can cause vulvodynia.I truly believe that was the case for me. They also say that vuvlodynia can last for years or can just go away out of the blue.

As I began to really watch my body, I realized that if I took antiviral medication as soon as the feeling began to bother me, it would eventually begin to taper off.However, there were times when the medication worked and times when it didn't. It is really hard to explain.

In the end, it took about a little over a year for the pain to begin to go away on it's own. There are still one or two days when it decides it wants to come back, but it is nothing like the torture I once experienced. The pain has diminished almost 100%. Talk about just dealing with constant pain and feeling uncomfortable and not really knowing what the heck is going on because no one really has the answer to give to you. I just hate thinking back to those days.

Well anyway, I just wanted to let you know that I can relate to your story, and I thank you for sharing.

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