Cryoablation

[stephanies]

It is my understanding that it just destroys the myelin sheath which interrupts the pain signal being sent to the brain. Then after the nerve "heals" and the sheath grows back, the pain signal once again goes to the brain. This is why, like with PRF, cryoablation typically has to be repeated every 6 months or so. I don't know if patients typically get a pain flare like they do after PRF. Apparently the procedure can be quite painful. I read a couple good articles about it, I will try to find them and post links here.

Stephanies

[jaxi123]

Yes if you can find the articles please post them

[kathyd]

It sound like a reasonable treatment to try as long as doesn't affect bathroom function as someone mentioned...

Also I wonder if you must have true Pudendal neuralgia..in order to have this treatment. I was orlginally Dx'd with IC and then later a PN type syndrome, but after many years of trial and error, I learned this was diagnosis was incorrrect.
and that my symptoms were due not to the PN itself, but something that affects the muscles.
Regardless,, the severe pain with sitting etc, and dysfunction are similar.. and I wonder if this procedure would help me too?
If so, I would consider travelling to Maryland to see a doctor who does it. Thx for any info.

[jaxi123]

Does anyone know of RF or cryoablation helps muscle spasms?

[rick]

I have an appointment with Dr. Prologo at Emory Johns Creek Hospital on February 27, 2016 for a consultation. I plan to ask that my pudendal nerve and the nerves to my testicles be treated with cryoablation.

I was diagnosed with entrapment of my pudendal nerve by Dr. Hollis Potter in 2012. In October 2016 I was diagnosed with entrapment of my inguinal nerve by Dr. Henry Lai at Washington University School of Medicine, St Louis, Mo. In December 2016 I had a nerve block done by Dr. Laurence Levine in Chicago, IL which was positive for entrapment of my right testicle. A ultrasound of my testicles done in 2015 after I had extremely painful periods of aching in my left testicle showed evidence of inflammation in that testicle.

I have read cadaver studies that show up to 5 nerves can be entrapped. I expect that, since I now have severe pain in both of my testes that both my ilioinguinal and genitofemoral nerves are entrapped. Also, of course my pudendal nerve. So on February 28 I have a consultation and nerve blocks. If the nerve blocks show entrapment I have been told that the cryoablation will be done about two weeks later pending insurance approval. Since I am on medicare and there is now a medicare code for this procedure I hope there will be no problem.

I will post my progress, hopefully, as I go through the steps of the procedure. It has been a long journey since I fell in June 2005.

Rick Russell

[April]

Rick,

I'm so sorry to hear about all the different possible entrapments. It sounds really difficult. Thanks for the update. Do let us know how the cryoablation works.

April

[Violet M]

Wishing you all the best with your appointment, Russell. Do you have a list of question prepared that you want to ask? I'm thinking one of the questions on the list is how many of these cryoablations he's done and the success rate. Also...whether any patients have gotten worse from the procedure.

Violet

[rick]

Dr Prologo has done over 250 cryoablations as I understand with good results. Yes, I did have a list of questions for him. As a retired business consultant with a with a record of working with over 500 businesses and start-ups, also 15 years of working as a rehabilitation counselor/vocational evaluator with a BS degree in Psychology, an MBA and an Master's in Library Science. And having worked as Director of a small rural library and having relocated from Illinois back to Florida in the early 2000's to put together the business library component for a new library opening. I have had over 40 years of history of work successfully done with a large amount of individuals and groups including 12 years as an adjunct professor/instructor of economics and 5 business courses at two different community colleges in the state where I live.

I have an extensive background in research and have an archive of over 1000 articles/research studies on male pelvic pain, nerve entrapment etc. Although there is no guarantee from having a new procedure done I would not have approached Dr Prologo without a high degree of confidence on my part. I am a special case in that I get very little restorative sleep. This is caused by a some-what rare condition called alpha/delta wave intrusion where these waves intrude upon the part of the brain that puts a person into deep sleep. I have had about 10 sleep studies at numerous hospitals, medical centers with no evidence that I go into deep sleep. Because my sleep is non-restorative my ability to recover from any insult or injury is extremely problematic for me. I also have severe 9 out 10 sleep apnea however my sleep is not deep enough to allow me to keep a CPAP machine on even while using nasal pillows which are less restrictive that wearing a mask. Even when I would fall asleep exhausted I would wake up a few hours later with the CPAP shut off, which it does automatically when the nasal pillows are removed. I would have no memory of removing the nasal pillows from my nose.

For two years in the 1980's, after my second child was born, I felt I did not sleep at all. I have communicated with one other individual who has gone through a similar experience. During this period I would have out-of-body experiences where, while I would be lying in bed in a semi-sleep state I would feel my - it is had to describe what it was I felt - but that part of my existence was floating above me separate from my body. I also have experienced periods of deja-vu where I felt that what I was experiencing I had experienced before. This has happened to me numerous times in the United States, also in Vietnam while serving in the Air Force during the Vietnam war and in Japan. Dejavu is basically caused by a disruption in the brain's processing ability. Also I have had periods of up to one week where I would basically operated on automatic processes; a psycho-affective disorder where I would have no memory of where I was or what I was doing. I was brought out of this state twice by automobile accidents where fortunately no one was injured. At other times something happening in my environment jolted me back to reality.

Through it all I have received my degrees. I worked professionally at a high rate of functioning in numerous professions.I have researched, designed and built my own super-insulated house in the early 1980's. I have also, at times, worked myself into a state of exhaustion. I also only sleep a maximum of 4 to 5 hours a night so I have a lot of hours to fill and I don't like television.

I saw my first psychiatrist in 1952 or 1953 after my father hung himself. My father was a soldier in Patton's army in world war II He fought in the battle of the bulge among other battles. He came home from a horrible war experience with severe post traumatic stress.
One of 8 children I came from an extremely poor family and began working summers on local farms, tobacco fields at age 8.

I have accomplished some of what I wanted to do in my life. But, my body got in my way from accomplishing some of my goals. Since I can not have conventional surgery - poor results plus poor recovery possibilities because of non-restorative sleep. I waited, bided my time, almost lost my wife as more of my nerves became compromised. First the pudendal, then the inguinal. My penis, my perineum, my testicles. All extremely painful. But I have been lucky. I have been able to build a life with my wife of 43 years; a beautiful wonderful woman. She is a professional working at the highest level. An RN of 40 plus years experience. I have two children, both boys ages 41 and 32, both with my wife.

After Dr. Prologal had done enough cryoablations that I felt comfortable with him. I took my shot and went for the procedure. Young, he is a great guy. Someone who, if I drank, I could sit down in a bar with and discuss many things including nerve entrapment. He listens to my questions, respects but understands the limits of my knowledge, as I also do. A neurologist, imminent in his field that I used as my pain MD. He has over 30 years of experience once told me "Rick, you know more about this nerve than I do." He was being polite, of course I don't. But we managed my care together. I could pitch medication combinations to him, include my research and he would say yes, no or maybe. He was the MD that allowed me to go to 1500 mg of Lyrica a day. He wrote the script knowing that my sleep had gotten so bad that I could barely keep going. Between the pain and exhaustion I might have had to take to my bed like many. But with the Lyrica and 180 mg of Cymbalta I could still function. Prologo is that kind of MD.

Now, at age 70; I am 2 and 1/2 weeks past my cryo with Dr. Prologo. My pain levels are way down. Dr. Prologo finds that it typically takes up to 90 days for the pain to basically go into remission. Because of my age and sleep issues; (I am writing this at 2:44 a.m.) I expect it to take longer; if ever all go away.

But, next week I have my 10 year old grandson. Spring break for him, a gift again for me. We have house repairs to get done, a new gas grill to put together. A yard to get ready for spring in central Illinois. Bob, living close, 20 miles from me lives with his father,my youngest son age 32. Bob is a product of a broken family. His mother a druggie he hasn't seen in 5 or more years. She is now in jail in another state. Her third time behind bars. Sad, because she is smart, attractive all those things that would seem to make her a normal person. But, she is heavily addicted to drugs. Breaks the law to get the money to pay for, Really a tragic situation. Too, far too common.

Bob has been a gift to me. He is a very bright child who says he would like to be a scientist, We don't do science experiments very often but we incorporate science, practical mechanics, carpentry, home design etc into many of our interactions. Until he gets bored. Then, he can watch a maximum of 1 hour of T.V. at my house. He also can use his tablet maybe a little more than an hour. He likes to read books. Like with my children I started to read to him at a very young age. His father, my youngest son is not a reader so this is something Bob and I share. A lot of what we do depends of how I feel. When I am in a lot of pain I have to let him spend more time finding his own way through the day. I will also have Bob the summer.

My wife works 50 hours a week or so. Her choice, she loves her job. She goes out with the girls, her friends from work. Yoga, movies, the Y. That's one way we manage to stay together.

I do want to tell you that solutions to dealing with chronic pain are coming closer. Also, you can take more medication than most MD's will want to prescribe. Find those associated with good medical schools. Do your homework, ask and expect to be treated with respect. But, you have to know your stuff to go in that room and quietly but continually expect that respect. You have to do your home work.

I may be a little more educated than some of you. But, more than most I am driven to accomplish what I want to do in life. I have cried when the pain was so bad, have withdrawn when I was so exhausted and the pain was so bad. But, I am no one special. Just a person trying to build as close to the life I wanted to. A psychologist I used to see, a specialist in pain once asked me why I built the house, got my degrees even though I blank on tests. Why I worked as a professional even though under pressure my body would go crazy with stress. I had to teach myself to appear calm to continue to function. I have clinical depression starting at age 9 or 10. A panic disorder; depression- I defined as fatigue, the physical aspects of panic which I taught myself to understand as physical not mental. Thankfully only a small amount of obsessive compulsive which I would not allow to take over my life. I told her these are things I've always wanted to do so I did them.

I think we all to try to find answers to who we are; why we feel what we feel. What has worked for me is to not believe, not to trust unless I verify carefully. My wife says I don't trust anybody. There is more than a little truth in her statement. But, when I had my kidney cancer I discussed my options with 3 MD's, the last a nationally known expert. I pitched cryoablation; discussed positive and negative margins as they would relate to my case. I asked for and received a referral to a young, talented interventional radiologist. I underwent a 45 minute, minimally invasive procedure and now the cancer is dead. The remains still inside me. but inert.

I expect to have similar results from operation with Dr. Perlogo. I have perhaps 15 years left to live. Pretty much pain free I expect. I had to research, then learn to organize what I learned. I built an archive. I expected respect from MD's. I brought my information, always updated with me. If I did not get that respect I moved on. I had to move on from less than 5 MD's. Once again, verify. I use younger MD's, graduates from the better medical schools who teach and practice at the better medical schools. They usually practice a more enlightened form of medicine. I avoided the giants in the field. I would rather have some one younger. Perhaps about 10 years experience.

I avoided anything invasive. I feel that except for the few very lucky ones of you invasive procedures will not provide the answer you want. I never had a nerve block until earlier this year. Then only for diagnostic reasons. Nerve blocks can cause flares. They can leave a person worse off than before the block.

You have to be in charge of your own body. That is the only path that I can make sense of. It is your body not mine or any other person's. Remember, each of you are unique, a special person. Expect to live a special life if you have a disorder such as nerve entrapment. Through genetics, environment, decisions we make or don't make some of us will have this to live with. That is where we are at the end of the day. Take it a day at a time if you can. Expect to have periods of despair if you have them, it is only human. Find what joy you can.

Trust if you must; but verify. Don't believe without proof, verifiable evidence. Don't expect life to be easy. It is not necessarily so for any one person. You and I don't know how another person thinks, feels. Or, perhaps your instinct is better than mine. I never had much emotional intelligence. But when faced with a physical problem that little truth is known about I think you have to move away from instinct to other methods of interacting, believing.

At their best people in the helping professions want to help; provide a solution. But many MD's make a diagnosis in the first 5 or 10 minutes of an interaction with a patient. You have to know that. That MD can only provide solutions that they know about. Usually that is small group of all the solutions out there. MD's are specialists in most cases. Having limited knowledge and expertise in the universe of all possible solutions that are out there. This is what that makes it so hard to navigate in an increasingly uncertain world od medicine. A science but still mostly an art if there is no specific test. Also, If there are only two or three choices to make to deal with any issue or problem then choosing one is perhaps manageable with maybe some degree of confidence of success.

For rare diseases or disorders often the best choice may be to delay making a definitive choice but to try to find another way to make it to the next day. Distraction, keeping busy as possible, hobbies. Communicating. Educating. Weaving. I don''t know.

For me, life has been always looking for answers. For me finding, evaluating information. Not to become an expert I am not a MD. I am a generalist, perhaps a subject expert in a couple fields of study. Surely not medicine. I am not a social person. I get bored around most people. I don't expect life to be easy. I don't know the life of others. I can't read their minds. Even the best of those who specialize in deciphering non-verbal communication, if they are honest with you would have to tell you that they have to take a leap-of-faith to decipher your thoughts.

Take care, Rick 5:30 a.m.

[Violet M]

Hope you continue to experience success from the procedure, Rick. It's great to see you feeling better after so many years.

Violet