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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.

cperlin | @cperlin | Jun 17, 2023

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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1 reply
cperlin | @cperlin | Jun 17, 2023

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. There's an article on the Alternative Pain Treatment Directory website "Calmare Scrambler Therapy is an Effective Therapy for Complex Regional Pain Syndrome. Here's the link: https://www.paintreatmentdirectory.com/posts/calmare-scrambler-therapy-is-an-effective-therapy-for-complex-regional-pain-syndrome-crps. I believe the Mayo Clinic has been investigating this treatment and finding positive results.

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connie2023 | @connie2023 | Jun 18, 2023

Hello, I too have CRPS. DISCLAIMER: I am NOT a doctor or health care provider, just someone who has CRPS.

I believe you are referring to a sympathetic nerve block, not a parasympathetic nerve block. The sympathetic nervous system is the one initially involved in CRPS. Search for "Is CRPS sympathetic or parasympathetic". There is a link below to the Mayo Clinic information on CRPS. A sympathetic nerve block is performed that targets the ganglion (nerve bundle) just outside of the CNS or just outside of the spinal column. They perform a sympathetic nerve block as a diagnostic tool for CRPS and then may do a nerve block or series of nerve blocks to see if they help. Each person is different, some get relief, some do not. These injections are done (for the ankle/leg/foot in the "lumbar region" which refers to one of the areas of the spine (along with the sacral region) where the nerves that go to the leg/ankle/foot exit from. Search for "What sensory nerves innervate the lower leg, foot and ankle". These nerve blocks did not work for me but did confirm that I have CRPS. As I said, each person is different. I recommend you do your research and decide whether or not you want to try this treatment.

As far as finding a pain management doctor goes, again, do your research. There is a FB group called "Positivity with CRPS" that you can ask to join which has a lot of good information on CRPS. There is also an organization called RSDSA that has a website by the same name that advocates for people with CRPS and also has a lot of good information. I have been to a few different pain management doctors. What you need to know is that many of them offer either injections or invasive procedure like spinal chord stimulators (SNS) or dorsal root ganglion stimulators (DRG) or the placement of a surgically implanted pain pump. Again, everyone's experience is different. For some it helps, for some it does not.

Bottom line - what I have discovered is that you truly need to be your own advocate and do a LOT of homework to research CRPS and possible treatments. Then choose the path that resonated the most with you. I also urge you to do this NOW. The earlier CRPS is treated, the better the likelihood you can reverse or "cure" CRPS. Research will tell you there "is no cure", but don't let this discourage you. Research continues to find a "cure" and in the meantime people have had success with various treatments such as those listed on the Mayo Clinic and other such as the RSDSA website. Scrambler Therapy, which is referenced above is one of the treatments that some have had success with. You will find a plethora of therapies to try - some covered by insurance some not. Again, choose the path that makes the most sense to you. I have had CRPS for four years as a result of a foot surgery. I continue to research and discover ways to manage the symptoms.

Best of luck to you!

https://www.mayoclinic.org/diseases-conditions/crps-complex-regional-pain-syndrome/diagnosis-treatment/drc-20371156
REPLY
4 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 18, 2023
In reply to @connie2023 "Hello, I too have CRPS. DISCLAIMER: I am NOT a doctor or health care provider, just..." + (show)
@connie2023

Hello, I too have CRPS. DISCLAIMER: I am NOT a doctor or health care provider, just someone who has CRPS.

I believe you are referring to a sympathetic nerve block, not a parasympathetic nerve block. The sympathetic nervous system is the one initially involved in CRPS. Search for "Is CRPS sympathetic or parasympathetic". There is a link below to the Mayo Clinic information on CRPS. A sympathetic nerve block is performed that targets the ganglion (nerve bundle) just outside of the CNS or just outside of the spinal column. They perform a sympathetic nerve block as a diagnostic tool for CRPS and then may do a nerve block or series of nerve blocks to see if they help. Each person is different, some get relief, some do not. These injections are done (for the ankle/leg/foot in the "lumbar region" which refers to one of the areas of the spine (along with the sacral region) where the nerves that go to the leg/ankle/foot exit from. Search for "What sensory nerves innervate the lower leg, foot and ankle". These nerve blocks did not work for me but did confirm that I have CRPS. As I said, each person is different. I recommend you do your research and decide whether or not you want to try this treatment.

As far as finding a pain management doctor goes, again, do your research. There is a FB group called "Positivity with CRPS" that you can ask to join which has a lot of good information on CRPS. There is also an organization called RSDSA that has a website by the same name that advocates for people with CRPS and also has a lot of good information. I have been to a few different pain management doctors. What you need to know is that many of them offer either injections or invasive procedure like spinal chord stimulators (SNS) or dorsal root ganglion stimulators (DRG) or the placement of a surgically implanted pain pump. Again, everyone's experience is different. For some it helps, for some it does not.

Bottom line - what I have discovered is that you truly need to be your own advocate and do a LOT of homework to research CRPS and possible treatments. Then choose the path that resonated the most with you. I also urge you to do this NOW. The earlier CRPS is treated, the better the likelihood you can reverse or "cure" CRPS. Research will tell you there "is no cure", but don't let this discourage you. Research continues to find a "cure" and in the meantime people have had success with various treatments such as those listed on the Mayo Clinic and other such as the RSDSA website. Scrambler Therapy, which is referenced above is one of the treatments that some have had success with. You will find a plethora of therapies to try - some covered by insurance some not. Again, choose the path that makes the most sense to you. I have had CRPS for four years as a result of a foot surgery. I continue to research and discover ways to manage the symptoms.

Best of luck to you!

https://www.mayoclinic.org/diseases-conditions/crps-complex-regional-pain-syndrome/diagnosis-treatment/drc-20371156

Jump to this post

Hello @cperlin and @connie2023 -

Wow, @connie2023, this is fantastic information to share. Not only what you have found helpful, but information and positivity. A big take away is to be your own, best advocate - speak the truth!

Connie, have you given further consideration to the Mayo Clinic Pain Rehabilitation Center for learned ways of managing CRPS symptoms?

Mayo Pain Rehabilitation Center -

- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

Another way to learn about the PRC is through patient testimonials which really provide an insiders look of personal journeys and experiences. Here's a link to Mayo's newest testimonials, as well as Dr. Sletten's CSS video -

Mayo Clinic Pain Rehabilitation Center Testimonials:
- https://www.youtube.com/playlist?list=PLSWR1ylG_6JaW_4FLJGeSLwu1lPSRMATp

When I first discovered the PRC it was by way of Dr. Sletten's video about central sensitization. He presents the science behind chronic pain and offers a plan forward to find the best quality of life possible. Have you seen his video?

@cperlin Outside of procedures, implants, medications - have you ever considered a pain rehabilitation program? I went through the whole gambit of injections, nerve blocks, ablations, etc... ,but none of it ever helped enough. I got sick of band aid treatments. I do understand trying everything
(and did) and do respect each person's individual journey of pain management - just throwing out another approach to anyone possibly interested.

Hope you all have a great day!

REPLY
2 replies
connie2023 | @connie2023 | Jun 18, 2023
In reply to @rwinney "Hello @cperlin and @connie2023 - Wow, @connie2023, this is fantastic information to share. Not only what..." + (show)
@rwinney

Hello @cperlin and @connie2023 -

Wow, @connie2023, this is fantastic information to share. Not only what you have found helpful, but information and positivity. A big take away is to be your own, best advocate - speak the truth!

Connie, have you given further consideration to the Mayo Clinic Pain Rehabilitation Center for learned ways of managing CRPS symptoms?

Mayo Pain Rehabilitation Center -

- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

Another way to learn about the PRC is through patient testimonials which really provide an insiders look of personal journeys and experiences. Here's a link to Mayo's newest testimonials, as well as Dr. Sletten's CSS video -

Mayo Clinic Pain Rehabilitation Center Testimonials:
- https://www.youtube.com/playlist?list=PLSWR1ylG_6JaW_4FLJGeSLwu1lPSRMATp

When I first discovered the PRC it was by way of Dr. Sletten's video about central sensitization. He presents the science behind chronic pain and offers a plan forward to find the best quality of life possible. Have you seen his video?

@cperlin Outside of procedures, implants, medications - have you ever considered a pain rehabilitation program? I went through the whole gambit of injections, nerve blocks, ablations, etc... ,but none of it ever helped enough. I got sick of band aid treatments. I do understand trying everything
(and did) and do respect each person's individual journey of pain management - just throwing out another approach to anyone possibly interested.

Hope you all have a great day!

Jump to this post

@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.

REPLY
2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 18, 2023
In reply to @connie2023 "@rwinney @cperlin Yes, I have! I had my doctor refer me to the Jacksonville PRC and..." + (show)
@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.

Jump to this post

That is awesome news! Once securing insurance acceptance, the interview process of making sure the program can help you is the next big step. Are you local to Jacksonville?

REPLY
1 reply
delia74 | @delia74 | Jun 18, 2023
In reply to @connie2023 "Hello, I too have CRPS. DISCLAIMER: I am NOT a doctor or health care provider, just..." + (show)
@connie2023

Hello, I too have CRPS. DISCLAIMER: I am NOT a doctor or health care provider, just someone who has CRPS.

I believe you are referring to a sympathetic nerve block, not a parasympathetic nerve block. The sympathetic nervous system is the one initially involved in CRPS. Search for "Is CRPS sympathetic or parasympathetic". There is a link below to the Mayo Clinic information on CRPS. A sympathetic nerve block is performed that targets the ganglion (nerve bundle) just outside of the CNS or just outside of the spinal column. They perform a sympathetic nerve block as a diagnostic tool for CRPS and then may do a nerve block or series of nerve blocks to see if they help. Each person is different, some get relief, some do not. These injections are done (for the ankle/leg/foot in the "lumbar region" which refers to one of the areas of the spine (along with the sacral region) where the nerves that go to the leg/ankle/foot exit from. Search for "What sensory nerves innervate the lower leg, foot and ankle". These nerve blocks did not work for me but did confirm that I have CRPS. As I said, each person is different. I recommend you do your research and decide whether or not you want to try this treatment.

As far as finding a pain management doctor goes, again, do your research. There is a FB group called "Positivity with CRPS" that you can ask to join which has a lot of good information on CRPS. There is also an organization called RSDSA that has a website by the same name that advocates for people with CRPS and also has a lot of good information. I have been to a few different pain management doctors. What you need to know is that many of them offer either injections or invasive procedure like spinal chord stimulators (SNS) or dorsal root ganglion stimulators (DRG) or the placement of a surgically implanted pain pump. Again, everyone's experience is different. For some it helps, for some it does not.

Bottom line - what I have discovered is that you truly need to be your own advocate and do a LOT of homework to research CRPS and possible treatments. Then choose the path that resonated the most with you. I also urge you to do this NOW. The earlier CRPS is treated, the better the likelihood you can reverse or "cure" CRPS. Research will tell you there "is no cure", but don't let this discourage you. Research continues to find a "cure" and in the meantime people have had success with various treatments such as those listed on the Mayo Clinic and other such as the RSDSA website. Scrambler Therapy, which is referenced above is one of the treatments that some have had success with. You will find a plethora of therapies to try - some covered by insurance some not. Again, choose the path that makes the most sense to you. I have had CRPS for four years as a result of a foot surgery. I continue to research and discover ways to manage the symptoms.

Best of luck to you!

https://www.mayoclinic.org/diseases-conditions/crps-complex-regional-pain-syndrome/diagnosis-treatment/drc-20371156

Jump to this post

Thank you immensely for making the time to post such a thorough response to my query! I am deeply appreciative of the detailed explanations, and for sharing your personal experiences. I admit that the pain management specialist that I saw back in February perhaps did not explain completely what his plan of treatment involved. l am going to look into each of the items that you delineated.

You shared that your CRPS resulted from foot surgery. My ankle/foot/lower leg issues are from a severe fall onto concrete floor at a warehouse store, and that was 2 years ago this month. At age almost 75, and having other painful conditions, it has been very difficult. I am resigned to the fact that my life has been altered tremendously (due to other injuries from that same fall), and all I want to do is be able to manage a better quality of life. So I do appreciate the words of encouragement and support, and the valuable information. God bless you for that.😇

REPLY
1 reply
connie2023 | @connie2023 | Jun 18, 2023
In reply to @rwinney "That is awesome news! Once securing insurance acceptance, the interview process of making sure the program..." + (show)
@rwinney

That is awesome news! Once securing insurance acceptance, the interview process of making sure the program can help you is the next big step. Are you local to Jacksonville?

Jump to this post

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.

REPLY
1 reply
connie2023 | @connie2023 | Jun 18, 2023
In reply to @delia74 "Thank you immensely for making the time to post such a thorough response to my query!..." + (show)
@delia74

Thank you immensely for making the time to post such a thorough response to my query! I am deeply appreciative of the detailed explanations, and for sharing your personal experiences. I admit that the pain management specialist that I saw back in February perhaps did not explain completely what his plan of treatment involved. l am going to look into each of the items that you delineated.

You shared that your CRPS resulted from foot surgery. My ankle/foot/lower leg issues are from a severe fall onto concrete floor at a warehouse store, and that was 2 years ago this month. At age almost 75, and having other painful conditions, it has been very difficult. I am resigned to the fact that my life has been altered tremendously (due to other injuries from that same fall), and all I want to do is be able to manage a better quality of life. So I do appreciate the words of encouragement and support, and the valuable information. God bless you for that.😇

Jump to this post

@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.

REPLY
1 reply
delia74 | @delia74 | Jun 18, 2023
In reply to @rwinney "Hello @cperlin and @connie2023 - Wow, @connie2023, this is fantastic information to share. Not only what..." + (show)
@rwinney

Hello @cperlin and @connie2023 -

Wow, @connie2023, this is fantastic information to share. Not only what you have found helpful, but information and positivity. A big take away is to be your own, best advocate - speak the truth!

Connie, have you given further consideration to the Mayo Clinic Pain Rehabilitation Center for learned ways of managing CRPS symptoms?

Mayo Pain Rehabilitation Center -

- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

Another way to learn about the PRC is through patient testimonials which really provide an insiders look of personal journeys and experiences. Here's a link to Mayo's newest testimonials, as well as Dr. Sletten's CSS video -

Mayo Clinic Pain Rehabilitation Center Testimonials:
- https://www.youtube.com/playlist?list=PLSWR1ylG_6JaW_4FLJGeSLwu1lPSRMATp

When I first discovered the PRC it was by way of Dr. Sletten's video about central sensitization. He presents the science behind chronic pain and offers a plan forward to find the best quality of life possible. Have you seen his video?

@cperlin Outside of procedures, implants, medications - have you ever considered a pain rehabilitation program? I went through the whole gambit of injections, nerve blocks, ablations, etc... ,but none of it ever helped enough. I got sick of band aid treatments. I do understand trying everything
(and did) and do respect each person's individual journey of pain management - just throwing out another approach to anyone possibly interested.

Hope you all have a great day!

Jump to this post

Thank you so much for the links along with the info.
I do wish that I could get to Mayo for evaluation, as I have several issues that have been around for several years. A neurologist (was heralded by my primary care provider as being "so highly sought after that you will be getting a very distal appointment") did all that she could with my brain lesions, ataxia, double vision, vertigo, nerve "zaps" and a slew of other things that came to a head in 2014. She even sent me into NYC to be examined by other top neurologists, and no one could give a determination as to whether or not it was MS. Certainly wasn't any of the other disorders/diseases that were tested, and I was grateful for that. But she finally told me I should consider Mayo. Unfortunately, my husband's medical issues did not permit even thinking about it, especially since it is so very far from our home. I cannot travel solo, and have no one else to accompany me, so I am exploring avenues available to me via several great doctors within decent driving distance. It's complicated...but I'm thrilled to have found connect.mayoclinic.org, and that I can have access to such compassionate and helpful people on this site. ¡Mil gracias! I will be going to the sites that have been provided.
💝😊

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