Pudendal Neuralgia Alliance
 

Cryoablation: A procedure using a closed-probe, gas-based system. This procedure uses extremely cold temperatures to selectively destroy nerve endings to create a block that stops the conduction of pain.

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Cryoneurolysis: A procedure that produces lesions in peripheral nervous tissue through the application of extreme cold. This process creates a temporary blocking of nerve pain. Cryoneurolysis consists in applying extreme cold (-70°C) (-94°F) to the nerve causing the pain, in order to relieve painful symptoms.

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Why is Cryoablation dangeorus?

 

The definition of Ablation is Destruction. One cannot ablate the pudendal nerve because it carries necessary motor signals as well as pain signals.

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The pudendal nerve’s motor function controls the movement of your:

   1. Urethral sphincter muscles, which help you hold in or

       release urine (pee).

   2. Anal sphincter muscles, which help you hold in or release

       feces (poop).

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If you ablate/destroy the pudendal nerve, you will no longer have a nerve to control your urethral sphincter muscles and our anal sphincter muscles which means will be incontinent.

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The only "study" regarding Cryoablation was done by J David Prologo  1 , Roger C Lin, Roger Williams, David Corn. Dr. Prologo at Emory in Atlanta. There were only 13 patients, no detailed data, and there is no statement, "No Conflict of Interest."  He conducted the study along with David Corn who I looked up and is an administrator, not a doctor, at Emory. The other two names I could not find and are certainly not medical doctors.

 

Dr. Prologo, Administrator Corn, and Emory will make a lot of money will only positive results. They have a clear Conflict of Interest. This is not a true study.1

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TRUE ACCOUNTS of three women who had cryoablation.

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I along with others have spoken to two women who had cryoablation, the destruction of their pudendal nerves through cold.

 

One we will call Ava, about two years ago, by a doctor in Atlanta and the other we will call Rose, about four months ago, by a doctor in Cleveland.

 

The doctor in Atlanta never even did a Diagnostic Anesthetic Transgluteal Pudendal Nerve Block on Ava, so he never diagnosed her with pudendal neuralgia. She will never know if she had it or not.

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Both women experienced extreme pain and complete urinary and fecal incontinence. They both sat in their bathrooms peeing and defecating uncontrollably. The emotional trauma was equal to the physical.

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Both had to learn to catheter themselves. This leads to the danger of constant urinary tract infections UTIs or worse because of the infections that could be caused by feces. Each had to decide to wear diapers or have another doctor put in a colostomy bag.

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The woman who traveled to Atlanta immediately called the doctor and he yelled over the phone at her multiple times saying it was her fault.

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After one year Ava has regained the ability control her peeing and pooping, but she has no feeling along her pudendal nerve. She is completely num,  damaged for life.

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The young woman, Rose, who went to Cleveland called her doctor as well. He did the same as the doctor in Atlanta. He yelled at her several times and said it was her fault.

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Ava is experiencing deep depression and suicidal ideations. The last post I read from her was that she was on the verge of becoming homeless.

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There is a third woman who we will call Sophia. She traveled from Italy to see the same doctor in Atlanta. I have tried to reach out to her many times but have not been able to talk to her.

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Through friends on the Pudendal Neuralgia Facebook Groups, I learned that Sophia had to enter a psychiatric institution before being able to return to Italy. I still reach out to her because I want to hear her story firsthand. I will update if I make contact.

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Medicare is the benchmark for FDA approved procedures. If it doesn't cover one, it is probably not a good idea to go forward.

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The exception may be neurostimulation because although there are no large, significant studies concluding that it relieves chronic nerve pain for pudendal neuralgia because it is rare, there are a myriad of them of other nerves and parts of the body. 

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"But though such diseases are individually rare, collectively an estimated 25 to 30 million Americans are affected." 1 

 

30 million out of 330 million Americans is not rare.

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One of our objectives of Pudendal Neuralgia Alliance is to raise funds and to convince hospitals and doctors to run clinical studies on neurostimulation and other treatments. Medicine should not only be about profit. Money is necessary for studies and research, but highly profitable areas of medicine and donation should fund non-profitable disease studies and research because Americans suffering from them are equal in value to all others.

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1 https://pubmed.ncbi.nlm.nih.gov/25511935/  This should not even be published.

2  https://www.nih.gov/about-nih/what-we-do/nih-turning-discovery-into-health/promise-precision-medicine/rare-diseases#:~:text=But%20though%20such%20diseases%20are,30%20million%20Americans%20are%20affected.

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Pudendal Neuralgia Alliance

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