Outspoken Activist Shaun King, 43, In ‘Excruciating Pain’ With Rare Nerve Condition, Struggling To Pay Medical Bills

The father of five and loving husband to his wife Rai King recently took to Instagram to share some photos of himself in the hospital, where he’s smiling and holding up a peace sign.

A lengthy caption accompanied his post, detailing what he’s been going through and how he is in need of some financial help.

“On most days I'm asking for help for someone else, but today I'm asking for some help for myself. As you can see, I've been in the hospital a lot – trying anything I can to relieve the excruciating pain I'm experiencing after a lifetime of spinal injuries,” King wrote in his social media post.

“I've now been diagnosed with something called occipital neuralgia, which is actually the worst pain I've experienced in my adult life. It's so extreme that my own doctor and others that have experienced this warned me of suicidal ideation that often accompanies it. It's that bad.”

He explained how the rare neurological condition has led him to experience pain when he moves his head.

“It can hurt to talk, chew, even blink my eyes. It can now hurt to touch my hair or even touch parts of my face. It's awful,” he said. “So I just met with my doctors and they want us to try several promising procedures that aren't covered by my health insurance. ⁣

“And I just can't afford to do them on my own, but I damn sure refuse to stay like this.⁣”

King said he won’t be working as he receives treatment, leaving him unable to help his family financially. He asked his supported to help his family pay for his upcoming procedures.

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⁣”⁣It was very hard for me to do this, but I know that you all would hate knowing I couldn't afford the medical care and didn't ask for your help. ⁣Anything you can chip in helps,” he concluded before sharing that money can be donated via CashApp, Venmo, and Zelle.

King’s most recent post comes after he previously opened up about having “yet another procedure” on his cervical spine.

“I really wrestled with sharing what I'm about to share because as a man I was always taught to never reveal a weakness,” he wrote in a post from earlier this month. “But after years of therapy I've worked hard to unlearn some of the needless machismo I grew up with. I'd rather you all see the highs and lows of my life.” ⁣

He noted that following his last spinal procedure he had “excruciating pain,” which seemed to be coming from the back of his head.

After a trip to the ER, a neurologist, and a CT Scan,⁣ he received his occipital neuralgia diagnosis.

King noted, “I've never felt anything like it in my life.⁣”

What Is Occipital Neuralgia?

According to the National Institute of Neurological Disorders and Stroke (NINDS), occipital neuralgia is a “rare neurological condition that involves shooting, shocking, throbbing, burning, or aching pain and headache that generally starts at the base of the head and spreads along the scalp on one or both sides of the head.”

This condition involves the occipital nerves, which span from the part of your body where the spinal column connects with the neck, up to the scalp area around the back section of the head, NINDS explains.

Pain from occipital neuralgia is often felt in the:

• Behind the eyes and ears (usually on one side of the head)
• Upper neck
• Back of the head
• Forehead
• Scalp

“The pain usually begins in the neck and then spreads upward. Some people describe the pain as migraine-like,” according to the NINDS. “The scalp may become tender and extremely sensitive to the point where a light touch can cause severe pain (allodynia).”

This condition could be caused by an injury, overly tight neck muscles, a pinched nerve, nerve compression, infection, inflammation, or disc disease.

Occipital neuralgia is often diagnosed following a physical and neurological exam, as well as diagnostic imaging.

“A nerve block (in which a local anesthetic and steroid drug are injected into the area around the nerve) may help with diagnosis,” NINDS explains. “Treatment options include medications, steroid injections, heat, and surgery.”

NINDS suggests anyone with occipital neuralgia look into clinical trials looking for improved ways to safely diagnose, treat, or prevent the disease.

If you or someone you know is battling occipital neuralgia and looking to join a clinical trial, check out Clinicaltrials.gov. 

SurvivorNet also offers a guide to clinical trials, where we'll explain what clinical trials are, why they're so important and how to go about taking part in one.

If you're looking for a clinical trial, check out our easy to use SurvivorNet Clinical Trial Finder.

Resources for People Facing Rare Diseases

With a rare diagnosis, it’s common for feelings of anxiety, fear, and loneliness, to arise. However, it's important to know you're not alone.

Below are some helpful resources for the many people affected by lesser-known or less-researched diseases.

Academic Centers and Comprehensive Care Centers

For some rare disease warriors, community centers provide wonderful treatment options. But for people with rare conditions cancer or otherwise more specialized care may be required. In that case, the most effective place to find a specialist is often at academic centers and comprehensive care centers.

Seeking Care at a Comprehensive Cancer Center

In an earlier interview with SurvivorNet, Dr. Kenneth Miller, director of outpatient oncology at the University of Maryland's comprehensive cancer center, discussed what differentiates a “comprehensive cancer center” from other treatment providers.

Dr. Miller said, “Pretty much automatically, there's going to be a team approach [to your care]. Surgical oncology, medical oncology, radiation oncology, and all the support servicesand also wonderful pathology and radiology.”

He added that at a comprehensive cancer center, all of these different specialists work together as a team to help you find the best course of treatment for your specific kind of cancer.

“We call it a tumor boarda group to go through all the details of your case… so you get a group of very smart people coming up with a plan together that is hopefully optimal and gives you the best chance of doing well.”

Clinicaltrials.gov and the SurvivorNet Clinical Trial Finder

Another place to turn to when you've been diagnosed with a rare disease and you're considering experimental treatment or trying to find specialists is clinicaltrials.gov a database maintained by the U.S. government that compiles privately and publicly funded clinical trials conducted around the world.

Clinical trials themselves are research studies that compare the most effective known treatment for a specific type or stage of a disease with a new approach.

Clinical Trials Can be Life-Saving for Some

And if you'd prefer to search for clinical trials on a more user-friendly site, try SurvivorNet’s A.I. driven tool built on top of clinicaltrials.gov: the SurvivorNet Clinical Trial Finder. This tool is updated daily and gives users access to more than 100,000+ individual clinical trials to help them find treatment options.

Dr. Beth Karlan, a gynecologic oncologist with UCLA Health, told SurvivorNet in a previous interview that clinical trials can play an important role in some patients’ treatment, but they also serve a larger purpose.

“Clinical trials hopefully can benefit you, but is also providing very, very vital information to the whole scientific community about the effectiveness of these treatments,” Dr. Karlan said.

“We need everyone to be partners with us if we're ever going to truly cure cancer or prevent people from having to die from cancer.”

PubMed

And something similar to clinicaltrials.gov, PubMed is another place to look for help if you're trying to obtain research on your rare disease. This website includes more than 33 million citations for biomedical literature from MEDLINE, life science journals and online books.

If you type in your disease, you'll see a list of studies and articles about the condition. You can even add a filter to only look at clinical trial information. By looking at the doctors associated with the published clinical trial results and other articles, you may be able to find doctors that specialize in research for your disease.

Newly-Developed Drugs

Another step you may take after being diagnosed with a rare disease is looking into the drug companies developing drugs to treat your condition.

The “Right to Try” Controversy: When Should People be Given Experimental Drugs?

Drug companies may be able to help patients enroll in clinical trials, and in some rare cases, they may even be able to offer “compassionate use.” Compassionate drug use makes a new drug that has not been fully approved available to a patient facing a serious illness. This only typically happens when a patient has exhausted all other treatment options, but it is an important option to understand.

Similarly, researching drug companies may be a path to “off-label” drug use. Off-label drug use involves taking a drug that has been approved for treating one condition in the hopes that it may treat another condition that it has not yet been approved for.

Financial Resources to Consider

If you’re having difficulty finding resources or answers about how to get help paying for a disease or cancer you are battling, there are a few options you can consider. You can negotiate payment plans, seek out government assistance programs, or look to advocacy groups.

These are a few of the options cancer patients and their loved ones have to get help covering costs associated with treatment (from drug co-pays to travel assistance):

For Help With Treatment Bills

• The Cancer Financial Assistance Coalition can direct patients and their families to available local services.
• Many treatment centers offer extended payment plans and some may offer temporary payment delays, according to the American Cancer Society.
• CancerCare, which connects patients with oncology social workers, may be able to assist with co-pays, transportation, and other costs associated with care.
• The HealthWell Foundation may be able to help uninsured patients pay for treatment.
• The American Cancer Society may be able to link patients and their families up with local resources (they offer a 24/7 helpline).
• The Patient Advocate Foundation (PAF) works with patients and their insurance companies to resolve issues and may provide direct financial support to some patients.
• The Patient Access Network Foundation may be able to help with out-of-pocket costs associated with cancer treatment.

How Some Patients May Be Able To Get Help With Medical Bills

Contributing: SurvivorNet Staff

Learn more about SurvivorNet's rigorous medical review process.

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