Seeking info on use of parasympathetic block for complex regional pain

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🌺.

@delia74 You certainly have a lot on your plate. If you do get approved for medical cannabis, my fellow mentor, @artscaping, finds relief by using it and is a great resource if you have questions. Hang in there.

Gracias, Rachel! I received clearance for obtaining the medicinal cannibis. There is a process, so I have not gotten any as of yet. Thank you for giving me contact info for your fellow mentor. I definitely will be reaching out to him.

Awesome news! Glad to help. Her name is Chris - @artscaping. She mainly resides in the Neuropathy group here on Connect.

I appreciate having her name.🌺

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

Thank you so much for reaching out to me directly😊.

I did meet with the doctor in our medical group that deals with processing referred patients. My primary care physician had supported my considering cannibis; she is so aware of my pain history, and how the traumatic fall two years ago has added to my ongoing pain syndrome.

So I did get the required and official "approval" ID, and list of certified/registered pharmacies/suppliers. Our adult daughter, who has also suffered from pain since her late teens and was diagnosed in late 30's with ankylosing spondylitis, was recently approved also. She assured me that I could arrange a phone consult, eliminating the drive to the rather distal dispensaries. Our daughter said delivery was possible with the dispensary that she chose. I'll be making that call today.
To be honest, I am nervous about using the MM. I've researched via sites such as Mayo Clinic, Harvard, St. John's U., and other reputable sites. My biggest concerns: I deal with glaucoma and high blood pressure issues. And I'm having thermal abrasion on left leg to deal with collapsed valves that have plagued me for years. I learned that one must avoid MM before any surgery. Will be interesting to see what my vascular cardiologist will come up with as far as pain suppressor. I can't take ANY of them, not codeine, tramadol, or morphine, and a string of others. His nurse said he normally would give valium "to take the edge off." I had been prescribed decades ago, and the effects were unpleasant to say the least. So, No. I plan to speak with him this week. Surgery is at end of this current month. I was supposed to have the procedure VenaSeal but was ruled out since I have latex allergy. Never a dull moment...

Gracias for your willingness to be a contact/source as I navigate this new path in my journey.
Will keep in touch.🌺

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!

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.

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!