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.

@artscaping

Good afternoon @della74. This is @artscaping, also known as Chris. I see that @rwinney introduced us. So…..greetings and welcome to the world of medical cannabis. It has been my go to for pain control for 10 years. When you complete your process, I will be happy to help you in any way I can, I don’t know in what state you reside. However, the key for me was to find a dispensary with educated staff who can help you with purposeful and acceptable options,

May you be safe, protected and free from inner and outer harm.
Chris

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I live in MN and am in their medical cannabis program since last year. I have fibromyalgia and insomnia and was hopeful cannabis would help but I've not been able to find what works. The staff at the dispensary's won't give advice on products, you have to make an appt with a pharmacist. I've spoken to a few of them but none have been able to help me much. The product line in MN is limited, only one company is approved. They have one sleep gummy which helps a little. I tried some CBD and THC capsules for pain, but didn't get much relief from either. I would appreciate any suggestions you might have.

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@ripley

I live in MN and am in their medical cannabis program since last year. I have fibromyalgia and insomnia and was hopeful cannabis would help but I've not been able to find what works. The staff at the dispensary's won't give advice on products, you have to make an appt with a pharmacist. I've spoken to a few of them but none have been able to help me much. The product line in MN is limited, only one company is approved. They have one sleep gummy which helps a little. I tried some CBD and THC capsules for pain, but didn't get much relief from either. I would appreciate any suggestions you might have.

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Good evening, @ripley. It has been a while. It is nice to hear from you. However, I am sorry that you have not found relief from your pain and discomfort. You have experience and should benefit from the information provided by Papa and Barkley. They have two websites: https://www.papaandbarkleycbd.com/ and http://www.papaandbarkley.com. They are "teachers," and both sites have a "Learn" section.
They also have a good customer response system, which has been helpful for me.

One of the things I have learned is that everyone exploring medical cannabis has different needs and, therefore, various responses to the products. Also, I am now in my 80s and struggling with new aging issues as well as cognitive decline. I think you would appreciate developing a relationship with Papa and Barkley.

May you find the help that meets your needs.
Chris

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@bebold

I woke up from back surgery 43 years ago with CRPS of my left foot. I did all the nerve blocks I did everything that was offered at the time. Years later I was once told I needed to go back to a pain doctor and he literally blocked the door until I agreed to let him inject my back. Just right in his office. It scared the crap out of me. For me pain doctors are not the answer. Whenever I look at a pain doctor's website the only thing they offer that's not invasive is physical therapy. Any invasive treatment can spread your CRPS are even cause a new place to flare. I spread to my right foot too years ago but with covid, spread to the waist down. The doctor says I have it in my colon and larynx and possibly ribcage as it hurts to yake a deep breath. With long covid inflammation gor 3 years this month, my voice has dropped almost a full octave (I'm female.)
Just personally, I will never ever let anybody do any invasive treatment for CRPS ever again.
I was also in a bit of remission until I had my knee replaced. I didn't think about what it would do to my foot and neither did my doctor. The one thing that will help if you're having surgery on an extremity is a nerve block. Even if you're asleep the pain signals go to your brain and lay down tracks. The nerve block prevents the pain from traveling to your brain while you're asleep knocking very low the chances of having a spread because of surgery. Good to know.

If you're trying to make a decision about a spinal cord stimulator go to Sparrow Clinic website and watch the videos about all of the failed cases, including internal batteries exploding. Eek.

One thing I've learned with CRPS, you really don't think it's humanly possible, but things actually CAN GET WORSE! Triple think and always due diligence - especially how many years has the doctor been doing him and what's his success rate? And how many does it do a year. What has happened to his people who had a failure? Ask specific questions about them specifically. And your block has helped some, but all doctors are not created equal. 😀 best of luck.

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@bebold and @delia74, if you are not already familiar with. I would encourage you to evaluate PEMF (pulsed electromagnetic field therapy) as a non-invasive therapy to include for management of CRPS (and some of the other issues delia74 lists). If you undertake this, start with a look at https://pubmed.ncbi.nlm.nih.gov/29985719/, https://pubmed.ncbi.nlm.nih.gov/28934787/ , and https://pubmed.ncbi.nlm.nih.gov/35949961/ . Two of these convey it can be of help. One states no additional benefit to those getting benefit from physical therapy. I always like to convey both sides of anything. Aside from the studies, anecdotally, I have people in my realm with CRPS who are using PEMF and getting relief. If you look and determine you want to dive deeper, feel free to message me.

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@tad1304

@bebold and @delia74, if you are not already familiar with. I would encourage you to evaluate PEMF (pulsed electromagnetic field therapy) as a non-invasive therapy to include for management of CRPS (and some of the other issues delia74 lists). If you undertake this, start with a look at https://pubmed.ncbi.nlm.nih.gov/29985719/, https://pubmed.ncbi.nlm.nih.gov/28934787/ , and https://pubmed.ncbi.nlm.nih.gov/35949961/ . Two of these convey it can be of help. One states no additional benefit to those getting benefit from physical therapy. I always like to convey both sides of anything. Aside from the studies, anecdotally, I have people in my realm with CRPS who are using PEMF and getting relief. If you look and determine you want to dive deeper, feel free to message me.

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I have crps in my neck and coccyx along with fibromyalgia and multiple other forms that osteo arthritis. I Also have a spinal cord injury thanks to a surgeons mistake blowing out all the nerve branch of T9. -T10. Pain is nuts. I take memantine which is an hydrocoloace to glutamate in the brain. It really helps. See studies for nerve pain.

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@tad1304

@bebold and @delia74, if you are not already familiar with. I would encourage you to evaluate PEMF (pulsed electromagnetic field therapy) as a non-invasive therapy to include for management of CRPS (and some of the other issues delia74 lists). If you undertake this, start with a look at https://pubmed.ncbi.nlm.nih.gov/29985719/, https://pubmed.ncbi.nlm.nih.gov/28934787/ , and https://pubmed.ncbi.nlm.nih.gov/35949961/ . Two of these convey it can be of help. One states no additional benefit to those getting benefit from physical therapy. I always like to convey both sides of anything. Aside from the studies, anecdotally, I have people in my realm with CRPS who are using PEMF and getting relief. If you look and determine you want to dive deeper, feel free to message me.

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Thank you for posting this information. I most certainly will be examining the sites that you provided there.
An update on my CRPS:
Both my Pain Management and podiatry doctors emphasized that PT is what they highly recommend to patients but gave this advice: Best to take time to inquire about the qualifications, training, experience of therapists before embarking on the cost of my time and money. They each also said that "misguided therapy" could exacerbated the problem rather than ameliorate it. I definitely did not want any added problems to what I already dealt with. I employed their advice, first researching more info on CRPS, and adding to what I already had learned. I gleaned a great deal from reputable sites offering medical journal research data. I created a list of criteria that had to be met and what should be avoided. Then I googled for therapy centers within a 10 mile radius of our home. This was important to me because I do drive but don't welcome having to spend much time on the road, especially highways and busy corridors. I read available info on each center, then created a listing of those that seemed plausible. One by one, I called and asked to speak with whoever was director of the facility, explaining what I needed: a physical therapist with experience dealing with clients with the pain factors of CRPS. That always brought questions which told me that they had no knowledge of CRPS, but that did not deter me. I called 8 facilities. The directors were honest in their responses:
• "No, none of our therapists have had training in the specific needs of CRPS clients."
OR
• "None have had the training BUT they are highly skilled and would work with you in order to help with specific needs."
OR
• "Have never heard of that pain syndrome, and have never had a client express needing specific therapy requirements. BUT we can provide PT."

I gave up due to how exhausting and discouraging it was engaging in all those calls, etc. Determined to obtain MEANINGFUL physical therapy for my ever-painful problem, I brainstormed and came up with this idea: My knee therapist had helped me so much with regaining mobility and strength in the leg muscles which in turn helped relieve much of the knee pain. I trusted him: he was kind, careful to not inflict pain, had incredibly gifted hands, and had given me back increased mobility . I knew that he had no knowledge about CRPS from brief conversations we had had. I decided to ask Jacek if he would use his skills on my ankle, fully explaining how the foot/ankle/lower leg had been impacted by the same horrific fall that had damaged my left knee. He was receptive to reading the CRPS material that I had compiled. I told him how we would both benefit:
•I would have relief of pain, or at least reduction of the burning nerve pain. (The goal would be to bring it down from what I was experiencing 24/7: at Pain Levels 7 to 9 (out of 10), and sometimes felt like a 15 out of 10!)
• And he would be able to include in his resumé that he had indeed worked with a CRPS client, giving him "one up" over all the facilities within a 10 mile radius. THAT put a gleam in his eyes and a smile!
Jacek and I were actually excited by it all as we started our twice weekly sessions. At first, it was indeed so uncomfortable (yes, painful) but it was a "good" kind of pain because, as Jacek explained, the areas around that ankle had become rather "tight" and resistant to movement. (That tightness had contributed to my already unsteady gait and balance issues.) While he gently stretched and manipulated the entire foot, I would engage in relaxation exercises to focus away from what was being done to my CRPS affected areas. Between ultrasound, heat, his amazing therapeutic massage techniques, TENS, the recumbent bike, and stretching activities with various equipment, the ankle began to improve. Of course, I performed the movement exercises at home, including the muscle stretches, and I would perform them on the right leg also. I felt my lower body gaining strength, resulting in better mobility. At the end of the 12 weeks, I had gained release from the 24/7 high pain levels that had been gripping my ankle, foot, and leading up the leg.

The CRPS is still with me. But it does not OWN me.
The "burn" of the nerve pain is still present but at P.Level of 6 and at times 7 (generally on days that I've had to run errands or stand a lot more while doing house cleaning or cooking activities).
BUT that is so much better than the INTENSE hot burn of NON STOP Pain Levels 8 to 9. The ankle/foot is so much more flexible, having been released from the tightness that had settled in like a tight vise. Mobility has improved (although balance an gait problems are still with me, but the ataxia has plagued me for a decade). I still elevate my legs, do the learned exercises (I invested in a few of the items used at the PT center), apply heat when needed. I also have a pain salve compounded by my amazing podiatrist, which I use when needed.
Do I still live with pain? Of course I do, but there is no way to erase the damage inflicted by the shattering fall against the concrete floor of that store in 2021. The entire left side of my body was affected, but I'm grateful that the areas of the shoulder/the entire arm/wrist and hand have all recovered via lots of PT, OT, and shots.

I can function much better now as compared to before the help from my much appreciated therapist.

It's hard to believe that it will be 3 yrs come June 7 since the entire left side of my body was seriously damaged, three long years of pain, therapies, injections....and sleepless nights, emotional distress, mental anguish bought upon by the anger of how my life was affected. But I have come to terms with it since I have other health issues with which to contend. I've learned to adjust and adapt. CRPS and its components might never totally "go away" but the syndrome is more manageable now, and I have Jacek to thank for that.

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