Seeking info on use of parasympathetic block for complex regional pain

Posted by delia74 @delia74, Jun 12, 2023

My neurologist diagnosed complex regional pain syndrome of my left ankle/foot/leg, and referred me to pain management doctor for a parasympathetic block.
So has anyone had this procedure done? What is involved? How effective? Does it have to be repeated?

I've learned that not all PM doctors do this, having gone to one here in my town who ordered a spine MRI and insisted that the best course of action was injection into lumbar region. My neurologist disagreed with him, and referred me to another PM doctor. Have not made appointment because he is not in network of my insurance (so all expenses would be borne by me). I'm still looking for one who is in network AND is experienced with this procedure. What should I look for in a PM doctor, as I want to make sure I go to one that DOES meet what I need done? I've had nerve/muscle conduction tests done that show that there were issues as result of trauma from severe fall in 2021. (Also had MRIs.) Thank you in advance for any info you are willing to take the time to share.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@connie2023

@delia74, I too am in my 70's. Read the response from @rwinney and her question if I was still pursuing the PRC at Mayo Clinic. The answer is yes, I am as you will see in my response above. Please do not "resign" yourself to a life of chronic pain. There are many things you can do. Graded Motor Imagery including, Mirror therapy, and the Recognise app or Recognise flashcards, meditation, being with friends, etc. Do not discount those methods. You can learn more about them at this website: https://www.noigroup.com/graded-motor-imagery/

I cannot yet vouch for the Mayo PRC as I have not yet been there, but @rwinney has. So read what she has to say and figure out if that is an avenue you would like to explore. Over the past 4 years, I personally have tried many things both within and outside of the bounds of Western medicine. But, I also know the power of my mind/thoughts and the importance of keeping my body moving and as strong as it can be. I want to learn additional skills and techniques to live a quality life despite the pain from CRPS. Plus I need the discipline of a program to keep me moving forward. I believe that the Mayo PRC program will teach me those skills.

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You misunderstood, or I did not explain well enough. I am not resigned to a life of pain, although all my life I have indeed lived with varying degrees of pain from lifelong fibromyalgia, painful uveitis, osteoarthritis, peripheral neuropath, and nerve pain from spinal disorders. I have not allowed these situations get in my way of achieving my degrees, teaching secondary and graduate school, raising 3 children, caring for an elderly parent with dementia and paranoia, and now caregiver to my husband of 52 years. What I am doing is coming to terms with the fact that there are just so many avenues that I am able to pursue, considering the hefty plate that life has served me. So I seek answers, am quite willing to leave doctors that are dismissive, arrogant, hubristic, and have God complexes. Within the last year, I have found and now have on my medical team, incredible orthopedists, ocular immunologist, neurologist, an amazing primary care physician, and a cardiologist who is working to help me deal with the fact that I cannot take statins. Yes, my situation is rather complicated, but I don't give up😊. Thank you for your words of encouragement and your info, all of which are appreciated. I hope you understand more clearly what I am doing with my medical needs. I find great comfort in my writing (working on an adult novel and my memoir, as well as children's books), and I have connections to other writers, some of whom also share similar medical issues. Very comforting to be connected💝🌺.
I thank you for the link, and yes, I will be checking it out.

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@connie2023

No in the in the Western part of North Carolina. It is about a 450 miles away. My husband is driving me as I cannot drive very far though I DO have a left foot accelerator pedal installed in my car. I went two years without driving, so it is a freedom I do NOT take for granted! I was under the impression that Medicare covers the cost of the program. I hope that is true!! I do have a supplemental policy as well.

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Yes! Where there's a will, there's a way! I love that you modified your car with a left foot accelerator pedal. Getting over the hump of loss or change is difficult, but not out of the question. Strategizing and never giving up are keys.. Good for you.

Medicare covered the cost of the PRC once I made sure to add a supplemental policy that covered out of state, as I live in NY. My expenses came from lodging, meals and travel.

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@delia74

You misunderstood, or I did not explain well enough. I am not resigned to a life of pain, although all my life I have indeed lived with varying degrees of pain from lifelong fibromyalgia, painful uveitis, osteoarthritis, peripheral neuropath, and nerve pain from spinal disorders. I have not allowed these situations get in my way of achieving my degrees, teaching secondary and graduate school, raising 3 children, caring for an elderly parent with dementia and paranoia, and now caregiver to my husband of 52 years. What I am doing is coming to terms with the fact that there are just so many avenues that I am able to pursue, considering the hefty plate that life has served me. So I seek answers, am quite willing to leave doctors that are dismissive, arrogant, hubristic, and have God complexes. Within the last year, I have found and now have on my medical team, incredible orthopedists, ocular immunologist, neurologist, an amazing primary care physician, and a cardiologist who is working to help me deal with the fact that I cannot take statins. Yes, my situation is rather complicated, but I don't give up😊. Thank you for your words of encouragement and your info, all of which are appreciated. I hope you understand more clearly what I am doing with my medical needs. I find great comfort in my writing (working on an adult novel and my memoir, as well as children's books), and I have connections to other writers, some of whom also share similar medical issues. Very comforting to be connected💝🌺.
I thank you for the link, and yes, I will be checking it out.

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This makes me think of you. Keep up the good work!

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@cperlin

I don't know about that particular nerve block and where to get it, however there is a little known, very effective, noninvasive treatment for CRPS called Calmare Scrambler Therapy. It's very effective for neuropathic pain. Here's an article that talks about its use for CRPS: https://www.paintreatmentdirectory.com/posts/calmare-scrambler-therapy-is-an-effective-therapy-for-complex-regional-pain-syndrome-crps

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Hi @delia74 -

Have you seen these discussions about scrambler therapy that @cperlin mentioned?

Has anyone tried Scrambler Therapy for neuropathy or pain?
- https://connect.mayoclinic.org/discussion/calmare-scrambler-therapy-anyone/

Hope: starting Calmare scrambler therapy:
- https://connect.mayoclinic.org/discussion/hope-1/

Have you scheduled your nerve block or still considering options?

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Has anyone with Arachnoiditis gotten the shingles vaccine ? Dr is telling me no but shingles is nasty.

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@meri91364

Has anyone with Arachnoiditis gotten the shingles vaccine ? Dr is telling me no but shingles is nasty.

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People who get the shingles vaccine still sometimes get shingles. I had it on my face a year ago and it was nasty. However, there is a supplement called Lysine that I learned about during my episode. It is both a preventive and helpful in treatment. You might want to consider that instead. I took it and I've been doing fine for quite a while.

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@rwinney

This makes me think of you. Keep up the good work!

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Rachel, your thoughts are appreciated😊💖.

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@connie2023

@rwinney @cperlin Yes, I have! I had my doctor refer me to the Jacksonville PRC and I have appointments in July with a Pain Management physician and a Psychiatrist as the next step to get accepted into the program. The videos you mention are very good and encouraging to anyone experiencing chronic pain.

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Hi there - I've been thinking about you, and wondering when your appointments in July for the PRC doctor screenings are? Or, how did it go if you've already had? Do you mind letting me know when you get the chance?

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@rwinney

Hi @delia74 -

Have you seen these discussions about scrambler therapy that @cperlin mentioned?

Has anyone tried Scrambler Therapy for neuropathy or pain?
- https://connect.mayoclinic.org/discussion/calmare-scrambler-therapy-anyone/

Hope: starting Calmare scrambler therapy:
- https://connect.mayoclinic.org/discussion/hope-1/

Have you scheduled your nerve block or still considering options?

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Have decided to nix the nerve block for now. I unfortunately have too many other issues crowding my proverbial plate right now, including having thermal abrasion on right leg due to serious problems from failed valves in veins. Left needs it also but not as immediate. My vascular cardiologist recommended VenaSeal, but I researched it and was alarmed that a substance like that in Gorilla glue is inserted. My fear was on having any of it possibly go into my blood stream, possible issues with that. Most importantly: when I had a virtual visit with my doctor, to talk about the procedure again and to ask for alternate surgery, he kept saying that it was the best choice for me (age almost 75) and that the only obstacle would be if I had latex sensitivity. Evidently, the info supplied to him by my medical group FAILED TO INCLUDE THAT! His face blanched when I told him that I most certainly have burning, itching, and redness which then makes skin peel off where latex has come in contact😳. THAT squelched the procedure. So I am having thermal abrasion, although it is not something I'm looking forward to. However, I also want an end to the crippling pain that I get in both legs, making it impossible to do anything but lie down with legs up. Can't stand. Cannot walk. Lasts anywhere from a couple of days up to 4 - 5. So I'm having the surgery at the end of July on the worst of the two legs (the right one).
Since I'm unable to take any pain killers for my chronic pain, three of the doctors on my medical team have conjured that I need to consider alternative medicine. Tomorrow, I have appointment for reviewing my medical issues/history to see if I would be able to take medical cannibis. We'll see. There's a great deal to take into consideration, including improving my quality of life, being in a better situation so I can attend to my husband's medical situation. I'm not complaining, mind you. I just want to be able to find ways to help myself so I can be in a better position to help him (we just learned that my concerns about his memory issues, tremors, headaches, etc. do indeed have a cause...brain MRI indicates issues that we'll now be addressing). If indeed medicinal cannibis is cleared for me, perhaps I'll get relief from several pain problems.
I'll look into what you suggest re: Scrambler therapies. Hubby has intense issues with peripheral neuropathy, particularly in his feet. Sometimes applying Vicks helps (he learned about that online!).
Thanks for your input, cperlin! Really appreciated🌺.

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@rwinney

Hi there - I've been thinking about you, and wondering when your appointments in July for the PRC doctor screenings are? Or, how did it go if you've already had? Do you mind letting me know when you get the chance?

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Had my first appointment today with Pain Mgmt. It went well and he said that I was an excellent candidate. Second appointment is tomorrow morning with psychologist.

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