Could a Reiki and Ketamine Combo Combat Chronic Pain?

After years of living with pain caused by the rare genetic disorder Ehlers-Danlos Syndrome (EDS), and Chiari malformation, Susan Jackson is finding relief with a combination of eastern and western medicine.

For Susan Jackson, identifying the culprit gene kindling her chronic pain turned out to be even more perplexing than solving accounting riddles for the United States government. A CPA, Susan used to sit in a US Treasury Department office, mapping illegal international tax shelters. She would draw colored lines on a wall-sized flowchart—connecting Jersey to Luxembourg to Bermuda. “It was a maze… but you just had to follow the money,” she said, wishing her doctors could have likewise chased down the genetic instigator of her pain.

Susan embarked on her pain journey at age 23, the year she started to have headaches and neck pain. Then, at age 29, she had a bout with mononucleosis that lasted an unusually long 10 months, a condition doctors call chronic Epstein-Barr virus. After that, each year, another unlikely condition would appear. Temporomandibular joint syndrome (TMJ) plagued her with jaw pain, sacroiliac dysfunction caused pain in her hip. Up and down her spine, ailments arose—a bulging C-spine, annular tears in her thoracic spine, lordosis, four dural sac tears. Surgeons fixed one problem after another, but no one could figure out what was causing the various ailments. In 2003, a rare spinal accessory nerve palsy sparked severe neck and shoulder pain. In an attempt to fix this in 2007, a surgeon at Columbia University performed a muscle transfer involving muscles from her upper back. Among other odd locations, one year, she had pain between the third and fourth toes on both feet—known as Morton’s neuroma. In 2014, she suffered a deviated septum, but no one had punched her in the nose.

To make matters worse, her pain is invisible to everyone but herself and her doctors. “When many people find out what I’m going through, or have gone through,” she said, “they can’t believe it because I don’t look sick.… I always gently explain or remind them that when I’m ill or hurting. I don’t leave my bed, let alone my house, so they will never see me at my worst.”

As a result of her mounting pain from the accumulating ailments and surgeries, Susan has had to make lifestyle adjustments. In 2003, she hung up her snowboard. An adrenaline junkie, she also gave up roller coasters and sky diving. Her social life became limited. In 2015, she had to halt her accounting job.

Reiki practitioners use a technique called palm or hands-on healing in order to encourage emotional or physical stress reduction. (Image: iStockPhoto)

Genes Connect the Dots

Susan met her husband when she was 24. For years after their marriage, they had hoped for a child. However, in addition to other ailments, Susan had four miscarriages. Finally, as a result of her frequent miscarriages, Susan’s obstetrician performed a genetic test that confirmed she had a defect in her MTHFR gene (methylenetetrahydrofolate reductase). A defect in this gene can increase fetal risk for small but deadly blood clots. After discovering this defect, the obstetrician prescribed methylated vitamins and a blood thinner. The next time Susan got pregnant, she remained pregnant and after 36 weeks, gave birth to a baby girl. Susan decided to see a geneticist to learn more about MTHFR. The geneticist did something her other doctors hadn’t—he spoke with her for two and a half hours, unearthing layers of health history, ultimately stumbling on her up-to-date list of 22 surgeries. When the conversation ended, he looked at Susan, who sat, wide-eyed, waiting for more information on MTHFR, and asked, “Did you know that you have Ehlers-Danlos Syndrome?”

He handed her a printout from the National Institutes of Health about the disease that included a list of symptoms. Susan was shocked. “I was like ‘Oh my God! I’ve got 85% of this entire list and these things are connected?’”

Ehlers-Danlos Syndrome (EDS) involves mutations in a group of genes that guide the body’s collagen production. Because collagen is necessary to form the connective tissue found in skin, ligaments, joints, blood vessels. and organs, the disorder can affect many different parts of the body. EDS has 12 subtypes and affects only 1 in 5,000 individuals (See an overview).

While Hippocrates described this “disease of hypermobility” in 400 BC, it took 40 years of Susan’s life for an astute geneticist to pinpoint this as her underlying problem. But suddenly, everything made sense. When she was a child, she recalls her joints being overly flexible. “I could always sit in funny ways and do things my friends couldn’t do,” Susan said. But more than that, it gave an overall explanation to her series of troubles: “All these years, my body was just literally falling apart on me,” she said, “and all of it was so very painful.”

Within a span of eight months, Susan’s life had changed—she not only finally had a diagnosis but also a newborn baby. Because there is no cure for EDS, however, she has the constant job of managing her pain and any new symptoms. However, she had one more hurdle to go over this past year when a doctor discovered she had a Chiari 1 malformation, a condition often seen in patients with EDS.

Susan finding time to relax with a neck brace on.

One More Surgery

In 2018, headaches and neck spasms brought Susan to a neurologist who noticed the Chiari malformation. Although she had had this condition since birth, and had been symptomatic since her headaches began at age 23, the malformation was finally noticed on an MRI. Chiari 1 malformation is a condition where part of the brain, the cerebellum, slips into the opening at the base of the skull made for the spinal cord. When the brain drops into the spinal canal, it can cause problems with brain function, neck pain, depression, and dizziness, among other symptoms. This pain was in addition to the usual EDS neck pain Susan experienced, which is more related to instability of the cervical spine known as cranio cervical instability.

“Basically, my brain was squeezing out of my skull and into my spinal column,” Susan says. Again, as with EDS, she was relieved to know her neck pain had a name—and most of all, that she wasn’t crazy: “There were times I was wondering: ‘Is this all in my head?’ And literally it was.”

After the formal diagnosis, Susan underwent Chiari surgery in 2019 in which a segment of bone was removed from the back of her skull. This removal allows more room for the cerebellum in its proper place. It also involves opening and re-patching the dura, the lining that surrounds the brain and spinal cord. This patch work restores flow to the fluid that cushions the brain—cerebral spinal fluid—by expanding the space available for it to travel through.

After her surgery, Susan's optimism remains high!

With the Pieces Understood, Susan is Managing Her Pain

Today, Susan’s hair is growing back in from where it was shaved for the Chiari surgery, and she has noticed relief from the headaches she has had off and on for 20 years. She has started a new treatment for her neuropathic pain—ketamine infusions. Ketamine is not normally used to treat EDS pain unless the patient also has neuropathic pain; it is primarily used off-label, approved by the FDA only as an anesthetic agent for diagnostic and surgical procedures.

Ketamine is gaining in popularity at subanesthetic doses for such off-label uses as treating depression and chronic neuropathic pain. Developed in the 1950s at Parke-Davis and Company in Michigan, the drug essentially resets the brain via synaptogenesis. That is, it blocks NMDA receptors, which allows nerves to quit sending the same old excruciating pain messages, and instead, develop new pathways free of pain messages.

Susan received her ketamine infusions at the Ketamine Treatment Centers of America in Coral Gables, Florida. The doctor on site was a psychiatrist, even though she was receiving the treatment for pain rather than depression. At the site, she was given a comfortable recliner to lay in, Bose headphones, a mask, and fuzzy blankets. The infusion was to last 2 hours.  She had her own room and it cost $950 per infusion (private pay), she recalls. Susan didn’t like the hallucinations she had during her first infusion but changed her music playlist for the second infusion. Hallucinations are a common side effect, but Susan was determined to see the treatment through. When she woke after her second infusion, a nurse asked how her pain was. “I was baffled and asked, ‘What pain?’” Susan said.  The nurse smiled. For the first time in years, Susan remained pain free for 3 days. “I was floored,” she said. The next week, she got two more infusions. Her last infusion was two-and-a half months ago. If the pain relief lasts her for at least three months, Susan says she will return for a booster infusion, which typically costs her $750. Each booster is supposed to last longer and longer, until eventually only one booster a year is needed.

In addition to the Chiari surgery and the infusions, alternative medicine has given Susan a new lease on life. She continues to rely on her self-care tricks to get through pain at whatever site in her body her collagen deficiency is currently creating an issue: lumbar pillows, a neck brace, two heating pads, a hot bath, Ben Gay patches, and acupuncture stick-ons are all in her pain-relief tool kit (see also PPM’s pamper yourself gift guide).

Susan has also found ancient Eastern therapies like Japanese Reiki to be beneficial. “Reiki helps with the pain and helps with calming myself,” Susan says. “It makes me happy. There is so much joy and peace with just being so connected and centered.”

She also likes to use crystal healing, where crystals are placed on corresponding parts of the body to construct an energy grid, the goal being to surround a person with positive, healing energy. “It helps me stay on the positive side of things. I’m not as desperate as I used to be,” she says. Susan keeps crystals in her car, purse, house, and her child’s room.

Susan is on a list to be seen by a well-known EDS doctor in Washington DC, that she hopes will manage her soon, but right now she is on her own in terms of managing daily symptoms. She founded a South Florida support group on Facebook so others can exchange names of local doctors and therapies that help.

“I don’t know what the future holds for me,” she said. “The only thing I do know is that I can absolutely choose the way I react to my medical issues and situations that come up.”

Updated on: 06/01/20
Continue Reading:
CRPS and My Ketamine Infusion Journey
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