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Seeking info on use of parasympathetic block for complex regional pain
Chronic Pain | Last Active: Apr 14 5:05am | Replies (35)Comment receiving replies
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
Replies to "Hello, I too have CRPS. DISCLAIMER: I am NOT a doctor or health care provider, just..."
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.😇
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.
Thank you for sharing you information.
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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!