cryoablation

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Re: cryoablation

Postby Violet M » Sun Sep 18, 2016 3:48 am

StephanieS recently reported on cryo in Atlanta. Do a search on her most recent posts.
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: cryoablation

Postby Sleepy8727 » Tue Mar 21, 2017 6:05 am

We just met with Dr prologo and his team. He is super nice and smart. He only did a nerve block for diagnosis. It brought my pain down to a 2. Not sure if I want to ablate it yet though. Still trying to decide.
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Re: cryoablation

Postby rick » Sat Mar 25, 2017 8:32 am

I had cryo done by Dr. Prologo a little over 3 weeks ago. He froze the pudendal nerve and nerves to both of my testicles. My pain levels have dropped tremendously. He said that I was a case that required tremendous amounts of cryo because of the scar tissue that had built up over the years since I fell in 2005.

I found Dr. Prologo to be comfortable in responding to questions I had. He treated me as a member of the care team and had respect for the knowledge I had built up during the years I have spent living with and researching PN. I now have much lower pain levels that I treat with 1200 mg of neurontin, 120 mg of cymbalta, and non-prescription ibuprofen. He days it can take up to 90 days to become pain free. I will slowly decrease the neuronton; 600 mg at a time after about a month or so.

I have begun walking for about 2 hours each day building up from 1/2 hour the first week after my procedure. Somewhat at first, mainly in my penis, I can feel that after each walk that my pain, while still there, is less each time than in the past. Starting tomorrow I will begin to do light yard work. It is spring in Illinois and I have much to do. Last year my neighbor cut my grass for me. Just pushing my lawnmower would bring on tremendous pain/ache throughout my penis and scrotum. It became apparent that my testicles had become entrapped when I started experiencing a deep ache in my left testicle while just sweeping my bathroom floor, a small space. Also, both testicles would feel like they were burning and clenched like I might have a hernia on both sides. I was checked for hernias, just to be sure. I had had double hernia surgery in the 1980's. No hernias. That sensation is now gone. Along with significantly less penis pain and/or ache I no longer have the severe burning pain at the tip of my penis, a burning so severe that it was so difficult to take. I also had a, this is had to describe. It would feel like my penis had something inside that was twisting my penis from end to end. Also, kind of like a thrusting/twisting sensation. The electric feeling that used to run through my scrotum is also pretty much gone.

I would guess that it might take the 90 days to get rid of the pain, maybe longer in that I don't get restorative sleep. I spend little time in stage 3 or 4 or REM. It is called alpha delta wave intrusion. I also have severe sleep apnea but don't sleep deep enough to be able to sleep with the mask on. I am writing this at about 2 a.m. my time zone. I had about 3 hours sleep earlier, I walked a few miles today and was really tired. However, I am now up for the rest of the night. After breakfast with my wife about 9 a.m. since it is Saturday I may be able to take a short nap, perhaps an hour or so. That will be my sleep until tomorrow night. I drink no coffee, no beverages with stimulants. But it makes no difference to my sleep.

Tomorrow, or later today if you will. I will be back at it. Yard work, starting with the light stuff to begin with. I am getting a new gas grill on Monday so I have to move the old one out of the way, trim some bushes and clean my deck. But, I will take it slow. My life is 4, at most 5 hours of sleep. Then 19 to 20 hours awake made up of working on my house, remodeling when I am well. I don't like TV. So I spend the rest of my day walking, spending a few hours with my wife in the evening; she still works, loves her job as an RN, so we get away from each other about 10 a day during the week. Very helpful for her to escape me and my pain.

I spend a lot of time researching global economic, energy and economic patterns. In the U.S. economic and energy issues. Also, looking at developing alternative living and political standards for the U.S if we are not able to develop an alternative to gasoline. So many believe in battery run vehicles, but electricity is not always available and/or efficient, I can fill up my Toyota Sienna van and not have to worry about finding another gas station for about 375 miles or so. And it only takes about 10 minutes to fill up and I am back on the road. How many batteries can last that long, the Sienna is a full size V-6 van and I run it about 75 miles per hour. I can get gas just about anywhere 24 hours per day. So, I am looking further into hydrogen for home and vehicles.

With much less pain life is so much better. Consider cryo, talk to Prologo's people at Emory John's Creek Hospital in John's Creek Georgia just outside Atlanta. Life is much better for me just 3 weeks after the procedure. Life is beginning to be good again for a 70 year old man who had been worn to a frazzle.

Take care,

Rick
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Re: cryoablation

Postby Violet M » Sun Apr 02, 2017 1:55 am

Hi Rick,

It's great to hear you are having some hope now. Please take it easy and be a little bit careful, OK? ;)

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: cryoablation

Postby Lindsey89 » Fri Apr 07, 2017 9:32 pm

I wonder who StephanieS saw it Atlanta? I'm in Georgia.
Anyway, I wonder if this procedure could help my PN case. I think mine is a mixture of nerves being hurt during a bladder cystoscopy and also after having surgery for genital genital hernia repair with mesh. It effected backsback of my thighs 3 weeks after that surgery and ON has got worse since then. Also have bladder pain and area right under bladder. I'm very interested in this.

Is what they put in you by chance a steroid?
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Re: cryoablation

Postby Violet M » Sun Apr 09, 2017 4:49 am

Dr. Prologo is in Atlanta. Cryoablation is a procedure to freeze the nerve and is somewhat neurodestructive. I haven't heard of a steroid being combined with the procedure.

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: cryoablation

Postby starfire » Mon Aug 14, 2017 6:00 am

My nerve blocks had to be done through my buttocks under twilight anesthesia and the use of fluoroscopy to ensure the nerve was being engaged. I have interstim installed and they also used floroscopy to find my nerve to install the leads.
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Re: cryoablation

Postby Beyondpain » Wed Aug 23, 2017 1:37 am

Hi Rick,

I am new to the forum, but was diagnosed with PNE almost 10 years ago. I am a male of almost 40 years old and have tried different alternative treatments in the past years such as Nerve blocks (5), Decompression Surgery, PT, Neurostimulators, among others.

I recently read about the cryoablation approach and have made an appointment to see Dr. Prologo in Atlanta a month from today. Your posts have been really helpful to understand more about the procedure which is not very common at the moment and I wanted to ask you some questions before I see the Dr. because I am a Little worried about the outcome or even if it is a good option to go through with the procedure. Hopefully you read my message and can give me a different perspective from your experience:

1. How are you doing now since the procedure took place? Do you feel the improvement is sustainable?
2. Are there any risks from the procedure besides infections? My concern is if the nerve could suffer more damage and I wouldn't want to end up worse.
3. To your understanding, could the procedure affect sphincter control or cause erectile disfunction?
4. Is there anything else you think it would be useful for me to know?

Thank you for taking the time to read this and for your comments.

Cheers,
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