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Category: Guest Blogger for RSDSA

Pharmacy Benefit Managers and the DRUG Act

Written by Lisa Van Allen, Chair of the RSDSA Advocacy Committee, for the RSDSA blog.

I was recently asked for input on new legislation introduced by Rep. Marianette Miller-Meeks and five of her colleagues: Reps. Nannette Barragan (D-CA), Nicole Malliotakis (R-NY), Brad Schneider (D-IL), Rick Allen (R-GA), and Donald Norcross (D-NJ). The DRUG Act, or Delinking Revenue from Unfair Gouging Act, is a bipartisan bill that would rein in Pharmacy Benefit Managers (PBMs) requiring them to only charge a flat fee for drug placement versus letting them continue to charge a percentage of the drug price.

My response was a big YES – I support this bill and think you will want to as well. Here’s why:

The current structure in most pharmacies incentivizes PBMs to promote higher-priced medicine that takes money away from patients. PBMs are third-party administrators that manage prescription drug benefits for employers, health insurers, and other clients. They negotiate drug prices, process claims, and provide services such as drug rebates, disease management, and medication adherence programs. PBMs contribute to high drug costs because they are incentivized to steer patients towards drugs that are more profitable for PBMs, but may be less clinically effective for consumers. This broken system disproportionately harms low-income individuals, seniors, and those with chronic illnesses who rely on life-saving prescriptions to manage their health.

One of the challenges in demanding greater accountability from PBMs is the relative lack of information about how they operate. The drug pricing process overall is already opaque, and PBMs add another layer of secrecy. Most insurers contract with PBMs to handle the administrative side of their drug benefit provision. But PBMs have no obligation to share details with insurers about how the PBM determines formulary placements, why some drugs in the formulary are more costly than others, and what proportion of the rebates and negotiated drug payments PBMs keep. This presents a challenge for insurers, plan sponsors, and for patients who end up bearing the cost of medications they desperately need.

PBMs are a growing faction in the distribution and payment ecosystem for prescription medicines. As the entity between pharmaceutical companies and pharmacies, PBMs initially played a key role in reducing prescription medicine costs and increasing access and affordability for Americans. Unfortunately, PBMs have grown and vertically integrated to the point where the three largest PBMs control over 80% of prescriptions, up from 30% in 2010. There are six PBMs that make up most of the market: CVS (Caremark), Cigna (Express Scripts/Evernorth), UHC (OptumRx), Humana (Pharmacy Solutions), Magellan (Prime Therapeutics), and MedImpact Healthcare Systems. Their modern-day practices of driving up list prices to extract higher rebates for formulary placement are occurring at the expense of patients in the form of higher insurance premiums and higher prescription drug costs.

PBMs often bill patients more than what they pay to the pharmacy for medicines and keep the difference, enriching themselves instead of the patients they are supposed to benefit. This business practice, known as spread pricing, adds opacity to a supply chain that needs transparency. PBMs have attempted to rebrand spread pricing, calling it “risk mitigation pricing,” and contending that it provides predictability for plan sponsors and lowers drug cost. what spread pricing actually does is drive up costs without any accountability or explanation to the consumer.

Please write to your US Representative and ask them to support H.R. 6283, the DRUG Act, and start Delinking Revenue from Unfair Gouging.

You can find your representatives here.

Be sure to let me know what you think of the Drug Act. Do you have a story to share? We want to hear it!

March 2025 Legislative Update: Support the EXPERT Act

Written by Lisa Van Allen, Chair of the RSDSA Advocacy Committee, for the RSDSA blog.

Representatives Doris Matsui (D-CA) and Gus Bilirakis (R-FL) and Senators Amy Klobuchar (D-MN) and Roger Wicker (R-MS), co-chairs of the Rare Disease Congressional Caucus, reintroduced the Scientific External Process for Educated Review of Therapeutics (EXPERT) Act, which seeks to formalize the Externally-Led Scientific-Focused Drug Development (EL-SFDD) meeting at the Food and Drug Administration (FDA).

This legislation seeks to bridge the gap between rare disease expertise and regulatory expertise through the EL-SFDD. These quarterly meetings will provide an opportunity for enhanced collaboration between medical experts, drug sponsors, scientific organizations, and patient advocates to discuss the challenges impacting the development of rare disease treatments, identify scientific opportunities to facilitate development, discuss novel clinical trial designs, and align on endpoints to address unmet medical needs for rare disease patients. Each meeting will focus on a different rare disease topic, and the FDA will report annually on how these sessions are helping to shape and improve its internal review process for rare diseases. 

In layman’s terms, this would put researchers in the same room with patients and funders to work together toward shortening the timeline on the creation of drugs that treat rare diseases like CRPS.

For more on this bill, click here. 

Contact your legislators today and ask them to support the EXPERT Act.

When you contact your congressional representatives, be sure to also ask them to support funding for Medicare/Medicaid and FDA research. Budget cuts are coming and we need to remind our representatives just how important healthcare services and research are to us. If you have a specific story about how Medicare or Medicaid covers treatment you need, be sure to include it. And then share your letter with us – we want to hear your stories and have examples to share with others. 

Life Is Not a Contest. I LIVE at My Own Pace.

Written by Shawn Elaine Anderson for the RSDSA blog.


This photo is of me and my husband this past holiday at a restaurant. I don’t cook much anymore and we met a friend out for dinner, I was not feeling well, but I really wanted to go, so I mustered up the energy. We were meeting a friend who has no family in the area, so this was important. I can see the pain on my face a bit, like a forced smile, but you know what? I went, I had fun, and I am so glad that I challenged myself to get up and ready to go out that day, but I am a Warrior… so I did!

How and when did you develop CRPS/RSD?

I was in a really bad car accident in 2005 where I was hit near head on by a drunk driver three times the legal limit. I had a compound tibia-fibula fracture and compound Lisfranc fracture on my right leg and foot. In the fall of 2018, I had an incident with my hands and they both were very red and swollen. In January 2020, five full years now, I was first suspected to have RSD. My actual official diagnosis was April 24, 2020.

What has daily life been like since your diagnosis?

I had A LOT of pain the first two years after the car accident and swelling and bleeding from my scars up to two years later. I kept working full time for years. Eventually, I then developed full autonomic nervous system issues over the year and it became too hard for me to work and I quit full-time work at 51.

Since 2018 I have worked some part-time jobs here and there and was awarded full disability in 2022. I rebroke my ‘bad’ foot on January 31, 2024 and the last year has been tough. I’ve been staying the course of “use it or lose it” and staying as healthy as I can mentally and physically so I can get through these hurdles. I’m thankful to have the unwavering support of my husband (pictured).

I used to cook all the time. It really was a hobby of mine but my hands just don’t have the strength they used to have so I don’t do that as much anymore. We actually moved a year ago from Phoenix, AZ to Northern AZ as I just had to get to cooler temps due to my heat intolerance.

What is one thing you wish those without CRPS/RSD could understand?

For the most part it is an invisible illness unless you see the breaks, casts, redness and or swelling… but it is invisible. No one wants this. I want for people who are not afflicted to understand that it is a serious issue and not just a functional disorder.

What advice would you give to newly diagnosed Warriors?

Always have faith in yourself no matter what. Gain support and advocacy from groups like RSDSA and others. Continue learning as new information seems to be available and being knowledgeable is key. You are still YOU. Yes, there will be challenges but always remember this is a beautiful life to live. And finally, it’s okay to isolate at times, but still find your tribe.

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

For anyone who has endured this for many years and you’re not in full remission, you get injured again, and then the pot gets stirred again, etc. you know you have to develop a thick skin to be able to set boundaries and communicate clearly with people.

This has gotten easier for me over the years, but overall it is still hard. I just view every day as a gift. I smile every day and find the goodness in all there is outside what may have been our prior normal life. We have no choice but to adapt.

What activities or treatments have helped you find temporary or long term relief?

Physical therapy and staying physically active in general is what helps in the long run. I am fortunate that I have not really needed many painkiller types of treatments. I am on Celebrex and have toggled between Lyrica and Gabapentin for nerve pain and they really seem to help. 

WRITING. Writing for me has been very therapeutic and helps me digest my thoughts and feelings about RSD and other co-morbidities. Counseling has been so key for me as well. Having a life coach (outside of a significant other, friend, or family member) to help you really look at things objectively and develop actionable plans for upcoming situations is great. Examples includes how to talk to family or friends about missing an event or what your needs are.

Spending time with my dogs is really important to me too. They are just such amazing creatures and give me such joy. I hope I am doing the same for them as well.

Anything else you would like to add?

Speaking of writing, check out my poem below to learn even more about my CRPS journey.

Connect with Shawn on Facebook and on LinkedIn. She also writes blogs for her and her husband’s music business on A432Life.com.

The Reality of Shawn’s Dis-Ease

When my bone is broke you see the cast
But you do not feel the pain that lasts

You don’t see agony, so hot and fierce
Like a miser I hide it in a tight coin purse

With great inflammation, skin shiny and tight
Nerves lose their sheaths in my mighty fight

The bone has healed, hopefully next is my soul
Yet my heart rate now is anything but slow

A woman blushes and glows, so I’m told
I sweat so much, hiding inside, once bold

Oh my dear Sun, I used to embrace as my own
Now there are days I wish you’d never shown

I’ve moved North and, yes, back to the snow
When sunny and sixties, still too hot I know

My skin dry and wrinkly, more so than most
But still to this LIFE, I pose a grand toast!

My bones I use and protect like fine crystal glass
Pain does not own me, I know it shall pass

I make the most of each day I’m alive and here
Trying to help others get through their fears!

Though my life took a one-eighty ‘bout face

Life is not a contest, I LIVE at my own pace

I Make NO excuses for a body that’s changed
I Just Embrace each day that I feel no Pain….

Every day I smile, on the outside I’m the same
I have nothing to prove… and I have ZERO shame

by: Shawn Elaine Anderson

Preparing to Talk With Legislators With a One-Pager

Written by Lisa Van Allen, Chair of the RSDSA Advocacy Committee, for the RSDSA blog.

Communicating directly with your legislator is the best way to promote change in the laws and policies affecting healthcare in the United States. When you meet with a legislator or staff member, preparation is important to assure your message is clearly and succinctly communicated. A “one-pager” is the best way to do this.

A “one pager” helps effectively deliver your message and facilitates a productive conversation on the issues of importance to you and your organization.

Meeting with a legislator or staff person in your local office or in the Capitol is a great way to share your CRPS story, information about your disease and/or organization, and problems that you and/or your organization face. We recommend creating a one pager to use as a tool during a meeting and to leave behind with the legislator or staffer at the end of the meeting.

A one pager is a brief fact sheet and should be one single page. When creating a one pager, present the information clearly and use concise bullet points.

Your one pager should include:

  • A brief statement on the organization you represent and what the organization does.
  • A brief summary of the problem that you are seeking help on. Use data and reference studies (when applicable) to support your position on the issue.
  • A brief summary of the solution to the problem, such as legislation, and what it will do for you and/or the pain community.
  • What your legislator can do to help, also known as the “Ask.” Example: Support the Protect Rare Act, HB 6094
  • Include a list of supporters such as a group of other organizations that support your position or piece of legislation, the co-sponsors of the legislation, and/or the other signers of the letter.
  • Include your contact information so that the legislator and staff person can contact you if they have any questions.

Creating your one-pager before your meeting with legislators is an excellent way to prepare and to create strong brief messages that will have an impact. 

Below you will see a sample one-pager on the PROTECT Rare Act. Do you have a one-pager that worked well in a meeting with a legislator? We’d love to hear about it! Contact the Advocacy committee at [email protected].

A New Pain Killer on the Market: The Good and the Not So Good on Journavx

by Pradeep Chopra, MD for the RSDSA blog. Edited for clarity.

There is a lot of discussion about the newest medicine on the market.

Suzetrigine, marketed under the brand name Journavx, is a novel non-opioid analgesic recently approved by the U.S. Food and Drug Administration (FDA) for the treatment of moderate-to-severe acute pain in adults. Developed by Vertex Pharmaceuticals, it represents the first new class of pain medication approved in over two decades. 

It works by blocking NaV1.8 channels. Pain is transmitted along nerves by the opening of NaV1.8 channels. Journavx blocks these sodium channels (NaV1.8) hence blocking pain transmission.

A few key points:

  • It affects only the nerves at the periphery (outside of the brain and spinal cord) like your arms, legs, etc. It does not cause addiction.
  • Unfortunately, Journavx is weaker than Vicodin in terms of controlling pain. It is more useful in acute post-operative pain and not in chronic pain. It failed treatment of low back pain.
  • Given its weak nature, it is unlikely to help CRPS.
  • CRPS is caused by central sensitization (aka pain triggered in the brain and spinal cord). Journavx does not act there. 

Clinical Efficacy

The efficacy of Journavx was demonstrated in two randomized, double-blind, placebo- and active-controlled trials involving patients undergoing abdominoplasty and bunionectomy surgeries. In both studies, participants receiving Journavx reported a statistically significant reduction in pain compared to those receiving a placebo. While Journavx did not outperform the opioid combination of hydrocodone and acetaminophen (Vicodin), it provided effective pain relief without the associated risks of opioid use. 

Benefits

  • Non-Opioid Alternative: Journavx offers a new option for acute pain management, addressing the need for effective treatments without the addiction potential inherent to opioids. 
  • Targeted Mechanism: By selectively inhibiting the NaV1.8 sodium channel, Journavx specifically modulates pain signals in peripheral neurons, potentially leading to fewer central nervous system side effects. 

Risks and Adverse Effects

In clinical trials, the most commonly reported adverse reactions among participants treated with Journavx included:

  • Itching
  • Muscle spasms
  • Elevated blood levels of creatine phosphokinase
  • Rash

Journavx is contraindicated for use with strong CYP3A inhibitors, and patients are advised to avoid consuming grapefruit products during treatment due to potential drug interactions. 

Considerations

While Journavx has shown promise in managing acute pain, its efficacy in chronic pain conditions remains under investigation. A Phase 2 study focusing on lumbosacral radiculopathy (lower back pain) did not demonstrate a significant benefit over placebo, highlighting the challenges in treating chronic pain and the need for further research. 

In summary, Journavx is not very impressive. It has a weak pain killing strength and is effective only in acute surgical pain and not for chronic pain. As with any medication, it is essential to weigh its benefits against potential risks and to consider individual patient needs when determining the most appropriate pain management strategy.

References

1. Oliver B, Devitt C, Park G, Razak A, Liu SM, Bergese SD. Drugs in Development to Manage Acute Pain. Drugs. 2025 Jan;85(1):11-19. doi: 10.1007/s40265-024-02118-0. Epub 2024 Nov 19. PMID: 39560856.

2. Hang Kong AY, Tan HS, Habib AS. VX-548 in the treatment of acute pain. Pain Manag. 2024 Sep;14(9):477-486. doi: 10.1080/17581869.2024.2421749. Epub 2024 Nov 18. PMID: 39552600; PMCID: PMC11721852.

Copyright 2025 Pradeep Chopra. All rights reserved.

Cultivating Relationships with Your Representatives

Written by Lisa Van Allen, Chair of the RSDSA Advocacy Committee, for the RSDSA blog.

Building relationships with your Members of Congress is important to ensuring that CRPS patients are heard on Capitol Hill and policymakers are working to improve the lives of patients living with pain.

Members of Congress are more responsive to their constituents and more likely to support a policy proposal when they hear directly from people who live in their district. You can find contact information for your House Representatives and Senators here.

To build a relationship with your Member of Congress, you can:

  • Schedule a meeting with your Member in your local District office or on Capitol Hill
  • Get to know the key staff who handle health care policy in the district and in Washington, DC
  • Invite your Member of Congress or their staff to special events held in your community
  • Attend events like town halls that your Member of Congress holds in the district and state
  • Volunteer for a candidate’s campaign activities
  • Engage with legislators on social media
  • Write letters or emails to your legislators
  • Write op-eds for your local newspapers
  • Send “thank you” messages (call, email, letter, social media) when your legislators support rare disease issues

When should I engage with my Representative and Senators?

Anytime and all the time! Start out slowly, with one or two different activities. As issues arise, engage with your legislators on those issues. Pay attention to the issues you care about most.

As a bill progresses through Congress (committee, House vote, Senate vote, conference committee, etc.), let your legislators know about your position on the issue. Don’t wait until it’s too late to voice your support or concerns on legislation you care about.

How do I connect with my legislator?

  • Find personal connections you have in common! As a constituent, you are from the same state and area as your legislator. You may even live in the same neighborhood, go to the same school, etc.
  • There may be local products, places or activities your legislator loves – when appropriate, reference them in your correspondence (I.e., Sen. Grassley is passionate about cancer prevention, and Rep. Ashley Hinson has two young sons involved in sports).
  • Research the issues that are important to your legislator (check out their website, newsletter, and press releases).
  • Research legislation that the legislator has supported previously (check out their website and press releases).

TIP – Staff are an amazing resource and Members of Congress rely on them to advise them on issues that affect their district and constituents

This information was adapted from the Everylife Foundation.

Advocacy Update | House Bill 6094 Protect Rare

PROTECT Rare Act – Providing Realistic Opportunity To Equal and Comparable Treatment for Rare Act

Over 7,000 rare diseases affect more than 30 million people in the United States. CRPS is considered a rare disease as less than 200,000 people in the US are affected. There is a lack of clinical research for the diagnosis and treatment of rare diseases because there are too few patients for drug companies be willing or able to sponsor clinical trials. Rare disease patients are all too often left fighting for off-label access to a treatment. This creates an even larger problem for patients relying on Medicare, as Part D plans are prohibited from including off-label uses of medications in the formulary. For these patients, there is not even an appeal or reconsideration mechanism available to appeal.

The PROTECT Rare Act (HB 6094) is designed to ensure parity in coverage for Medicare and Medicaid beneficiaries with rare diseases by including peer-reviewed literature and clinical guidelines and outcomes as “medically accepted use”. There is precedent for using medications “off-book” as certain medications were deemed “medically acceptable” for cancer treatment in the 1970’s. For many people with rare disease, off-label use of certain medications are the only treatment available.

This bill is supported by more than 60 rare disease organizations, including the RSDSA.

We encourage you to contact your federal representatives and Senators and ask them to support the PROTECT Rare Act.

You Are Your Expert

Written by Laura Swan, LMFT for the RSDSA blog.

How and when did you develop CRPS/RSD? 

In 2003, a physician did a shockwave procedure on my elbow. I was on workers’ comp for a repetitive strain injury and neck pain. She diagnosed tennis elbow despite my previous doctor saying thoracic outlet syndrome (TOS). Even with a nerve block I felt it hit the bone. I screamed so much that they gave me a full anesthetic. Within 36 hours, my arm was swollen and mottled. My hand was cold and blue. My pain level went off the charts and I could barely use my right arm (of course I am right handed). I switched doctors immediately and was diagnosed with CRPS and TOS. It took me another three years to have surgeries so the CRPS moved into both arms and my neck. The surgeries also consisted of sympathectomies to manage CRPS.

What has daily life been like since your diagnosis?

Life was horrible dealing with pain and depression. I could not use my right arm. The pain level was so debilitating that I developed depression as I could not work. I felt I had nothing to offer the world. I needed help with many things, could not have a baby at that time, and I had to go through the trauma of workers’ comp. After three years, I had two surgeries to decompress TOS and with a sympathectomy on each side to manage the CRPS. These surgeries were extremely painful, but successful in that my right arm was no longer discolored. I could use my hand more and my hand was warm. But I was left with nerve damage and a strong tremor in my right arm due to the shockwave therapy.

My recovery was hard with acupuncture, physical therapy, and psychotherapy. I was reliant upon pain meds to manage my symptoms and found that the fentanyl patches worked well for me. I was able to have a baby and had to adapt many things as my arm strength was weak. I wore a brace on my right hand to stop the cramps and to limit the shaking from my tremor. When the laws were changed regarding opioid medication, I researched spinal cord stimulators. Due to a very messy divorce and returning to graduate school, I had two spinal cord stimulators implanted in 2018. I had to have revisions as one broke when I was attacked (the leads fractured and could not be removed).

Now I have two spinal cord stimulators with four ports. One is cervical (arms, neck, jaw pain) and one is lumbar (lower back, CRPS in legs/feet and bulging discs from the attack). My cervical device changed my life. My pain was reduced and flare ups were less intense, shorter and more infrequent. My tremor has greatly subsided and I ultimately stopped needing fentanyl patches. My lumbar has been less successful and the CRPS is in both legs, feet and knees. I deal with moderate pain (with flare ups) daily and still need medication to manage this. I continue to live in hope that I can keep this managed and not let it take away my ability to walk.

Professionally, I had to take time off but I eventually graduated with a Masters in Counseling Psychology and I am now a Licensed Marriage and Family Therapist in California. I work in a high school in a therapeutic program and hope to open my own practice soon for evening only clients. I continue to manage my CRPS with meds and the spinal cord stimulators. Self-care is essential! I have worked with chronic pain clients before and this will be the focus of my own practice as there are few clinicians who understand chronic pain and its impact on all aspects of your life.

What is one thing you wish those without CRPS/RSD could understand?

I wish others would stop the “you look fine,” “you hide it so well,” ”you did this before, why can’t you now” comments. Ultimately, we are NOT faking this. Fighting CRPS is exhausting. I am frequently exhausted by work and then cooking or going out. People also do not understand that there is no cure and please stop suggesting PT, acupuncture, etc. as I have done it all and having two spinal cord stimulators should indicate that nothing works anymore.

What advice would you give to newly diagnosed Warriors?

Taking care of your mental heath is paramount as is finding a doctor who understands CRPS. I found support groups to be helpful and a safe space to share your feelings.

Also share with your doctor if you are struggling with depression, insomnia, or suicidal ideation. Please do not feel ashamed for these feelings. This disease is known as the suicide disease and there were times when I thought that ending my life was the only way to escape the pain. 

Fortunately I put myself on a voluntary 5150 hold once, had medication stabilization, and then found a great therapist. My depression passed and I currently no longer need medication. If you are in a dark place please use 988 or use these suicide resources:

Suicide and Crisis Hotline 24/7: Santa Clara County – 1 855 278 4204

Substance Use Services: Santa Clara County – 1 800 704 0900

Crisis Text Line – 741741

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

CRPS can go into remission. For my arms/neck/jaw I say it is in remission. My arms are still weak, but the tremor is mostly gone and I can do many things that I thought I would never do again.

Please find support groups as it is helpful finding others on the same journey online. Also please find a therapist who understands chronic pain to keep your mental health strong.

What activities or treatments have helped you find temporary or long term relief?

I cannot say enough about my spinal cord stimulators. It took three revisions (plus two implants and two trials) but the cervical device lowered my pain level by 80%. Acupuncture, heat, TENS, and aquatic PT really help. Mindfulness and meditation help manage pain, stress and improve sleep. 

Anything else you would like to add? 

CRPS is an unwelcome visitor in your life. Taking care of yourself and advocating for your own needs is essential. You know your body and your condition the most, so please do not let doctors dismiss you. You are your expert. CRPS can be managed and can go into remission. Adapting to living with an invisible disability is a long road. Ask for help when you need it at airports, etc. And also consider having disabled plates on your car.

Connect with Laura via Facebook, LinkedIn, and email.

The Veterans Health Administration Covers Ketamine

Written by Lisa Van Allen, Chair of the RSDSA Advocacy Committee, for the RSDSA blog.

Ketamine infusions have been proven effective in the treatment of depression, post-traumatic stress disorder, and chronic pain (including intractable pain like CRPS). The Veterans Health Administration has been covering the cost of ketamine infusions AND travel expenses to and from infusion centers for veterans for some time. Here are a few tips to ensure your treatments are covered if you qualify for veteran’s benefits.

The VHA will be looking for answers to:

  • Why you need ketamine infusions
  • Why you want to use this particular provider
  • What the provider will do to ensure a safe and successful experience with ketamine.

First, you will want to have a letter from your medical provider describing your disability rating. This should include what types of treatments have been used in your care and the limited success they have offered. It is not essential to have this provider’s support for ketamine infusions, but it would certainly help. 

Make a case for the use of the outpatient clinic you wish to use by documenting the lack of availability of ketamine infusion in the inpatient facilities in your area, if this is the case. You will want to get a description of the protocol used by the anesthesiologist at the outpatient ketamine clinic. Share the provider’s credentials and his/her experience using ketamine to successfully to treat your condition. Include what medications are utilized in the infusion, the length of time of the infusion, and what safeguards are used to protect you and ensure your comfort (monitoring equipment, staff ratio to patient, etc.). 

If you are seeking travel expenses, you will need to document the number of miles from your home to the infusion center. Some infusion centers require you have a companion sit with you during the infusion. It is unlikely the VHA will cover expenses for your companion – but it never hurts to ask!

There is an excellent article from the VHA that you might want to reference in your request on the efficacy of ketamine infusion for treatment resistant depression associated with PTSD.

Stellate Ganglion Blocks for Complex Regional Pain Syndrome

Written by Dr. Allison Wells for the RSDSA blog.

Stellate Ganglion Blocks (SGB) can be an excellent treatment option for Complex Regional Pain Syndrome (CRPS). Recent advances in medical technology have significantly enhanced the procedure, extending the possibility of relief to more people.

What is a Stellate Ganglion Block

The stellate ganglia are bundles of nerves on either side of the base of the neck associated with the sympathetic nervous system. A stellate ganglion block – also called SGB, sympathetic nerve block, or sympathetic nerve reset – is an anesthetic block of the nerves limits the signals conducted through those nerves. The procedure involves the introduction of a local anesthetic to the general area, and then targeted injections at the site of the nerve bundles. One side of the neck is treated at a time. The number and frequency of treatments varies, but can be as little as one block on one side of the neck (we start with the right-hand side), often two (one on each side of the neck), and frequently additional treatments in a series depending on the 

SGB works by temporarily blocking the sympathetic nerves in the neck, which are part of the autonomic nervous system responsible for “fight or flight” responses. CRPS is believed to involve abnormal responses of the sympathetic nervous system. By blocking these nerves, SGB can significantly reduce pain and other symptoms associated with CRPS.

SGB for CRPS

The procedure can improve pain scores for many people with CRPS. It is generally more effective for individuals with CRPS type 1 (where there is no clear nerve injury) vs type 2 (where there is likely or confirmed nerve injury). It is particularly beneficial for those suffering with pain manifesting in the upper extremities. As with many potential treatments for CRPS, it is difficult to know if SGB will be a good fit for any one person – due, in part, to the variable potential causes and presentation of CRPS. There is moderate but growing research on SGB for CRPS. Small studies have shown as high as 90+% of participants with CRPS receiving benefits from the procedure, but it is important to know that the effectiveness for any one individual is difficult to estimate with any great certainty.

Other Benefits of Stellate Ganglion Blocks

Stellate ganglion blocks have been studied and used for other conditions including some other types of pain conditions, anxiety and PTSD. This makes the procedure particularly interesting for individuals with CRPS who also suffer from PTSD 

Historical Context and Technological Advancements

Historically, the administration of SGB required the use of x-ray guidance to ensure accuracy or could be done ‘blind’ without the use of image guidance. A blind block in this area has the high potential for adverse consequences, including with complications due to the proximity of the vertebral artery. X-ray guidance, although effective, poses risks due to radiation exposure and typically required sedation, which could complicate the recovery process for patients. The evolution of ultrasound technology has revolutionized the procedure. Ultrasound guidance allows for real-time, precise visualization of the needle and surrounding anatomical structures without the use of x-ray radiation. This advancement not only enhances patient safety but also simplifies the procedure, making it faster and easier to perform.

Benefits of Ultrasound-Guided SGB

One of the significant benefits of ultrasound-guided SGB is the elimination of the need for sedation. Patients remain awake and comfortable throughout the procedure, which typically takes only a few minutes. The non-invasive nature of ultrasound means that patients can leave the clinic immediately afterwards without the lingering effects of sedation, and they are able to drive themselves home. The consultation and procedure typically take from 20 to 40 minutes in my practice, and patients are often in the office for 60 to 90 minutes for their appointment.

Side Effects

While there are certainly potential risks associated with this medical procedure, the ultrasound-guided method in the hands of an appropriately trained and credentialled professional can significantly limit risks.

Common and typically-transient side effects include temporary soreness at the injection site and a set of symptoms generally described as Horner’s syndrome. These symptoms are characterized by drooping of the eyelid, decreased pupil size, and reduced sweating on the affected side of the face. These effects are generally temporary and resolve without intervention.

A useful, and accessible treatment

The Stellate Ganglion Block is a very interesting block whose benefits go beyond those of many other types of blocks. It is useful for a variety of conditions and can be a real benefit to those with CRPS and some other pain conditions. For that alone, it may be useful, and for its ability to also potentially help with PTSD and anxiety it can be even more useful.

Advances in the portability, quality and cost of ultrasound equipment has allowed for ultrasound-guided the SGB procedure to be more effectively and safely completed in the office setting. When combined with expertise of an anesthesiologist trained and experienced in these technical blocks it is a powerful and accessible treatment option. I’m very glad to be able to offer the procedure and very glad to help people suffering with chronic symptoms. If you’re interested in more information, you can start with our page.

About Dr. Allison Wells

Dr. Wells is an anesthesiologist and an experience-leader in ketamine treatments for mood disorders and pain conditions. She founded one of the first focused clinics in the country, has helped many patients with many thousand infusions, and actively contributes to the field with research and advocacy. Wells Medicine, in Houston, TX, provides interventional procedures and a focus on comprehensive mental health toward excellence in evidence-based care.

Dr. Wells holds degrees from Swarthmore College and Baylor College of Medicine. She trained at Baylor College of Medicine and Harvard Medical School. She is a member of the American Society of Anesthesiologists, The Texas Society of Anesthesiologists and the Texas Medical Association. 

Wells Medicine, Houston, TX | wellsmedicine.com