Support Christine's Journey to CRPS Treatment

I am seeking funds in order to receive medical treatment for Complex Regional Pain Syndrome for myself in Florida. My cover photo is of me, 10 years ago, before the trauma began.

Hello, my name is Christine James.

I am a nurse, mother, daughter, friend, and loved family member. Recently, after an extensive ankle surgery performed on March 12, 2024, I developed a complication called Complex Regional Pain Syndrome. (CRPS). This condition is not curable, but it is treatable, and with the correct treatment it can be managed well enough for the symptoms to go away for a long time. The funds I am requesting are specifically for travel costs for myself and my mother to go to Florida for three weeks so that I may receive treatment that is not available to me in Michigan.

Here is my story:

I am currently on short term disability leave from work due to having had an ankle surgery on March 12, 2024. The ankle surgery performed was an ankle fusion of two bones, tendon transfer, and Achilles tendon release. This surgery was needed because I have had a condition called foot drop for 10 years. The foot drop was caused during a spinal surgery when during the surgery the spinal nerve root at L5-S1 was damaged. Foot drop means you cannot lift, or dorsiflex, your foot. At that time, I was about to enter nursing school. I did damage control like crazy for a year having imaging, nerve conduction testing, and physical therapy.

The following summer, I had a spinal fusion done at that level, since by doing so, that joint would be stabilized and during the surgery the doctor would remove any bone impinging and possibly further damaging that nerve. Nerves typically do not heal well or at all, if anything perhaps a tiny bit. I hoped, but my ability to lift my foot never recovered. I learned how to walk differently and went on to become a nurse. In total I have had 6 back surgeries due to herniated discs and degenerative disc disease: 2002, 2010, 2014 x3, and 2015. I have four screws and two rods in my spine.

Over the past 10 years without the ability to lift my foot, the structure of the bones in my ankle became misaligned, my Achilles tendon tightened, and eventually I became less able to do simple things- such as stand up at a concert for a couple of hours, walk a moderate distance, hike on uneven ground, or mow the grass without swelling, inflammation, and pain in my foot and ankle. My current job choice of becoming a Dialysis nurse was in part because it is much less walking and bending and heavy lifting and thus easier on my body. But, it got to a point where I could not ignore the fact that I could not get through even a day or a work a shift without taking Tylenol or ibuprofen, and that I was in pain every day and unable to do more and more things as time went on.

After seeing two doctors and not feeling comfortable enough to move forward, I met a third doctor. He is well known and award winning particularly in orthopedic foot and ankle surgeries. Since he was able to communicate so well about what was wrong, what was needed, and I felt comfortable with his plan, I decided to go ahead with fixing my ankle. I planned the time off from work and had the surgery with him on March 12, 2024. He did an excellent job.

However, 3 1/2 weeks after surgery, my leg had been in a hard cast for several days after it had been applied after post-surgical swelling had gone down. After being in the hard cast for several days something was very, very wrong. I felt as if my leg was being burned by a blowtorch while simultaneously it was exploding, I could feel it swelling up again in the cast. As a nurse, I thought I had compartment syndrome, but also thought it had been a bit too long after the surgery for me to have compartment syndrome. After calling my surgeons emergency line, I was told to go to emergency room and have the hard cast removed immediately. I did so, and returned to my surgeon first thing the following morning. He took one look and did an assessment, listening to my symptoms. He told me he thinks I have Complex Regional Pain Syndrome (CRPS), and he would give me a referral to a pain doctor to receive a spinal injection.

I did not know what CRPS was, had never heard of it, was never taught about it in nursing school, nor had I ever seen a patient with that on their diagnosis list. I wasn't upset at hearing this because I focused mainly on the fact that after having had so many back surgeries and blown out discs and spinal injections in the past, I thought, OK, a spinal injection, that's fine. I’ve done that before and made the assumption that the injection would fix the problem. I was wrong.

CRPS is the most painful nerve condition known to man, it is not curable, and there are very limited treatments. It is estimated that approx. only 200,000 Americans have it. It is considered rare and often goes undiagnosed due to many factors, such as doctors not believing the extreme pain complaints of patients, doctor’s beliefs that patients are only seeking opiates, doctors not knowing about this condition, misdiagnosis, etc. In the past it was once called Causalgia and Reflex Sympathetic Dystrophy (RSD). Half a century ago there were no treatments, and virtually no doctors to help anyone or diagnose it. Many people live with this condition for years as it spreads and completely disables them before they are finally diagnosed. Many have committed suicide due to the agony and lack of help.

I have 20 more years to work, as I am only 47. At the current time, there are three medical ways to treat this: 1.) Sympathetic spinal nerve block injections. 2.) Spinal Cord Stimulators. 3.) IV ketamine infusions. The sympathetic nerve block injections are initially used as a measure to confirm the diagnosis along with the Budapest Criteria and McGill Pain Scale. My new pain doctor did two sympathetic nerve blocks in the same week, as he knows that the second injection often works much better than the first. CRPS is a glitch in the sympathetic nervous system, this affects sensations through the body starting with the original affected area. The sympathetic nervous system also controls cardiovascular flow in affected areas, for me in my leg and foot, and causes prolonged swelling, stretching of skin, skin changes such as hair loss or wounds, and a condition called allodynia- which means even a light touch to the skin can be agonizingly painful. My CRPS spread rapidly. It began from the knee down on my right leg where I had the surgery. I had every symptom. It has spread to the entirety to both of my legs, across my chest above my breasts, and to my face on both cheeks.

It feels like someone is taking a hot iron or blow torch to your skin. Other times it feels like someone is stabbing you with needles or knives on repeat, or throbbing for hours. Other times it’s tingling, numb, or you can have variations of all of those sensations at once. Other times the extreme heat suddenly turns to a feeling as if your entire leg is in a heavy block of ice and you cannot lift it to walk.

I am also diagnosed with treatment resistant depression and anxiety. I have fought for the past two months to find a doctor who can provide what I believe is my best option which is IV ketamine infusions. After having had six back surgeries, including metal parts and extensive scar tissue, I went ahead with two sympathetic nerve blocks. This procedure requires that an extremely long curved needle be passed completely around the entire spine to the front of the vertebral column, and a local anesthetic is injected at the point of a sympathetic nerve ganglion to interrupt the "glitching pain loop" happening in the nervous system. These injections are used to confirm CRPS diagnosis if they initially work to relieve symptoms on the first and second tries. I am confirmed to have CRPS as the second shot relieved my symptoms for several days, and the first shot relieved symptoms for a few hours. I score at the top of the McGill Pain scale and meet all of the Budapest Criteria for diagnosis. This mode of treatment (nerve block) is not sustainable as it requires people to repeatedly go back for this dangerous procedure over and over, depending on how long they last on an individual. Of all medical interventions, this one lasts the shortest time.

For me, even though they worked, each time they irritated a motor nerve in my right hip for approximately 36 hours afterwards. This is frightening and indicative of the danger this poses for me for future injections.

A spinal cord stimulator is similar to a pacemaker in that a battery pack is installed under the skin of the spine and secured to spinal fascia with a stitch, it has two leads that enter the dural sac and are threaded up inside the dural sac next to the spinal cord inside the cerebrospinal fluid. This is an extremely dangerous procedure; it requires a four day test period during which there is an open path to infection directly into the cerebrospinal fluid. Furthermore, the device/battery has to be charged using a magnetic charging pad daily for the rest of life; additionally the battery pack under the skin would need to be changed every 14 years. This is in fact more dangerous than a pacemaker because an infection in the cerebrospinal fluid and of the spinal cord and brain can become deadly quickly. One small slip and injury to any part of the spinal cord can be catastrophic and completely paralyzing. My past spinal surgeries, nerve damage from past herniated discs, and the fact that there is only one stimulator model that "might" work around these issues makes this an absolute last resort. I am ultimately not a good candidate for this procedure and need to exhaust all of the least invasive options before risking a stimulator procedure.

My pain doctor herein Michigan is the only doctor accepting insurance for ketamine infusions for CRPS. The problem is that he can only offer an infusion occasionally, (maybe more or less than once a month if needed once treatment is started in his clinic) and does not offer the initial loading doses of ketamine that the leading pioneers in this treatment use. Since it often takes many years for healthcare to catch up with scientific findings and research, and since state laws vary, the red tape to overcome in order for doctors to offer the complete treatment of IV ketamine for CRPS is arduous and difficult. My pain doctor here does not make any money in is practice for providing IV ketamine to pain patients.

With the loading doses that Dr. Hanna in Florida is able to offer, it can put the CRPS into a remission type state, thus stopping all symptoms and allowing me to go back to work, and my pain doctor here in Michigan (Dr. Rosenburg at PRIZM in Canton) would be able to offer me "booster" or "maintenance" doses thereafter. All of the ketamine clinics I have researched around me in Michigan only offer CASH ONLY infusions and can range from $500-$1000 per infusion, and they are geared towards mental health doses which are much lower than doses for pain disorders. Many people find a way to pay out of pocket for a dose here and there.

I am seeking the loading doses in Florida with Dr. Hanna at Florida Spine Institute in Clearwater. He takes insurance for IV ketamine and is a leading pioneer and expert in treating CRPS with IV ketamine. The loading dose protocol he does, and that is not available to me here, has been scientifically proven to stop CRPS symptoms and stop the condition from spreading. It will stop the pain and swelling perhaps for months at a time. I have signed up with him and have been sent all of the orders and information to get started. I am in the process of getting all of the medical ducks in a row: Labs, psych clearance have already been done, and I have an appointment for a Medi Port to be installed in my chest on June 10. The Medi Port will be able to be used almost immediately. It is the same port used for chemotherapy in cancer patients.

I am seeking monetary help with air transport for myself and my mother to the closest airport we can get to Clearwater, and we hope to rent an AirBnB so that we can cook meals which would be cheaper than eating out continuously for three weeks.

Renting a car is very expensive and if our accommodation is close to the clinic we could use Uber to travel to the clinic, or if we find a close hotel with kitchenette in room and laundry facilities we could use a shuttle if available.

I am required to have a close family member or friend with me during the entirety of every infusion, and cannot be left alone during treatment. This is why my mother must go with me.

The initial consults for out of state patients with Dr. Hanna are done on Thursdays, and the IV ketamine treatments are done on Monday through Friday over two weeks, for a total of ten high dose infusions. This means a three week trip to Clearwater, Florida.

As both a nurse and a patient, for the past two months, I have done nothing more than make and attend appointments, do research, decipher scientific studies, watch doctors speak at seminars on YouTube about CRPS and treatments, make phone calls, type emails, scan or email or fax documents, google one thing after another, keep track of every bit of information, keep up with taking a myriad of medications and supplements, all while in the worst pain I have ever experienced in my life.

Right now my foot is swelled up like a balloon and is on fire, I cannot fit it into a shoe and I cannot return to work until the CRPS is put into "remission" and the symptoms are under control. This is my one chance to continue to "live", as right now I am not living. I already had treatment resistant depression, anxiety, panic attacks, and late diagnosed ADHD. I had made sure that I was being appropriately treated for my mental health with therapy and a psychiatrist before my surgery as I already knew very well that any surgery is a difficult process mentally. CRPS is often called "the suicide disease". I really do understand why, since my mental health has now spiraled out of control and I cry continuously and I am unable even to focus on watching anything intense on television, or doing some of my sedentary hobbies like crocheting.

I am buried under a mountain of medical debt, I have to pay out of pocket to continue my health insurance during short term disability. My STD only pays 60% of my base pay, so right now I take home $3117.24 a month on STD. My health insurance is over $500 a month and none of that is deducted from the STD pay, I have to pay it separately out of pocket while on disability in order to continue coverage. My car payment is $185. My rent is $2357.50 a month, and utilities including internet are approx. $385. I split the rent, internet, and utilities with my boyfriend 50/50, who I live with. (That's $1371.25 for me). All of this not even including things like car insurance, gas, life incidentals, etc. I have many prescriptions right now. After everything is paid, including making small medical bill payments, I have a few hundred dollars left a month to put towards co-pays, prescriptions, food, gas, and incidentals such as paying for rides to appointments I cannot drive myself to. I can’t even begin to address the medical debt until I am back to work. I am thousands of dollars in medical debt now due to the surgery and everything that has happened since. With insurance there is a minimum out of pocket, so bills arrive every day.

Every time I see a pain or specialist doctor the copay is $40. Every time I walk into physical therapy twice a week right now it's $20 each time. Me and my boyfriend split grocery expenses. Right now I’m barely scraping by on basic expenses, let alone a trip to Florida (Airfare, transportation, AirBnB or hotel, etc.). Securing a personal loan or credit card isn’t an option as my credit is subpar due to financial trouble several years ago and am currently in process of rebuilding it.

My mother is 71 year old, is not financially able to retire so she still works at Hantz Financial as a receptionist, but is willing to take non-paid FMLA for three weeks to go with me. It is a requirement for IV ketamine infusions that a support person be present during the entirety for each four hour infusion and to accompany the patient during transportation to and from the clinic, as well as monitoring the patient while at home or hotel after the infusions. The support person is suggested to best be a close family member.

I have applied to several medical air transport non-profits, and I have heard back from one. The pilots are volunteers, and the planes are small, non-pressurized, fly low, and have very strict limits on who they can fly. Due to my mother's age, I am concerned about the three bumpy plane trips it would take us to get to Clearwater if approved. Commercial tickets at this time can be found for under $200 for the month of June, dates depending.

I know that many people think that ketamine is a street drug called "special-K" or a horse tranquilizer. While yes, it has been both of those things, it was first discovered for use in anesthesia in the mid 20th century. It was used in humans and in veterinary medicine, as many medicines are. As time went on, it became widely known that ketamine can cause hallucinations, which landed it on the streets as a recreational drug. Please keep in mind that many, many medications can be abused, but are also used safely and effectively by doctors daily. Ketamine is literally used daily across the country in most general anesthesia. IV ketamine infusions done in this way using the initial loading doses and maintenance doses are 90% effective in treating CRPS (stopping symptoms and spread for extended periods of time). The dose given for CRPS is not a general anesthesia dose. It is somewhere in between that and a fun street drug dose, so during the IV infusion, other drugs are given to prevent hallucinations.

Since once a person has CRPS, it can exacerbate and spread with any other injury, ketamine will have to be used as part of my anesthesia for any other surgery or dental surgery for the rest of my life. And I have to be careful not to injure myself, as that can also cause further spread.

My pain doctor in Michigan, at my request, came up with a plan to wean me off Percocet, the process of which is now complete. I do not take any narcotics for pain at this time. I am now on medications that do mildly manage the symptoms. He can do another nerve block if needed while I wait for my trip to Florida.

My immediate family and partner are in full support of my pursuit of this treatment; as well as my orthopedic surgeon, my Michigan pain doctor, my psychiatrist, my pain behavioral therapist, and my regular therapist. They are all fully onboard and believe that this treatment is my best option and will not only give me the chance to put an end to my CRPS suffering, but will also help my treatment resistant depression and deteriorating mental health.

I don't have the money for this. I am starting a go fund me for all immediate and extended family and friends to contribute what they can for the travel expenses for myself and my mother, literally every penny counts. Currently my two daughters, 18 and 21, live in Arkansas with their father. They usually visit me during the summer and I manage to save and pay for their travel expenses to visit me. They chose to move to their dads two and a half years ago since I and their father divorced when they were very young, he was in the military and we all landed in different places. I had custody of them through the entirety of their young childhood. They have both expressed they would drop everything to come with me for this treatment as well, but none of us can afford it due to my medical expenses and current reduced pay, and them being young and not having much money or reliable vehicles for such a long drive from Arkansas to Michigan or Arkansas to Florida. As much as I feel the need to have them with me as I miss them terribly every day, I know that is likely not an option for us right now. Due to my need of treatment now, I may not be able to see them again for quite some time.

I have had to extend my short term disability to six months.

The dialysis clinic where I work, DaVita, is a wonderful company, and I want to continue my work as a nurse as I very much enjoy helping people. I became a nurse because I had already been a patient- having had my first herniated disc during my first pregnancy 22 years ago. I have known the worst pains over my life and have had many surgeries, and I can tell you that BY FAR, CRPS trumps everything I have ever felt. Please look up the McGill pain scale. I score right at the top where CRPS is. I need to get this treatment in order to continue to live. The pain I am experiencing is not “life” as any person would want to live it. I have family, friends, interests, hobbies, work, joy, and love to look forward to if I get the treatment I need.

My children and family need me. I am desperate. I need help. I need money for airfare, accommodations, and transportation while in Florida.

Thank You in advance. Christine James, 47 years old, RN, mother, daughter, friend, family member.

Here is a poem written by myself inspired by the art of my daughter Giorgia and the song, M.I.A. by the Canadian band Sumo Cyco. Both my daughter and the aforementioned band members gave permission to use their inspirations. It is about my journey into ankle surgery and being diagnosed with Complex Regional Pain Syndrome.

"Missing in Action"

Again and again,

More pain, more swelling, and then-

I'm faced with decisions,

My mind is filled with divisions,

Every plan made is forced to revisions

to accommodate my suspicions

and others' poor definitions.

Talking my way through the uncertainty,

Will my body heal from another incision?

Help me figure this out.

Who, what, where, when, why, and how?

Ten years gone by.

Distant memories haunt my mind.

Is there a solution that won't be undermined

by complications of body, soul, and my older mind-

which now has been so redefined?

Is this my next solution?

Or just another path to another stay of execution?

I eventually submit to the doctor's new substitution.

Another part of my body will again be rearranged.

Day after day, coping with pain;

anesthesia and a surgeon will determine my fate.

Trust cautiously given, I lie on the table risking my life,

Is this all really fake?

Lost in a black dream, I finally awake.

I feel like I'm blind, am I losing my mind?

Uncontrolled tears, releasing all of my fears.

My soul told me to follow my intuition.

The complication slowly came to fruition.

I feel like I can't see my hand in front of my face-

as the weeks go by, what is this foreign place?

I'm on a roller coaster ride,

of yet new pains I cannot describe.

To my surprise, I am re-traumatized.

My new condition is rare.

Once again, I am not spared.

New explosions of pain, I am searching in vain.

In the same body that's once again been redesigned,

new metal parts- the screws feel like they were drilled into my heart.

Dialing the numbers again and again,

repeatedly playing my new painful part.

Will they believe me?

Will they listen?

Does any doctor understand my new rare condition?

The laws are demeaning,

eating pills like candy is not an addiction I'm feeding.

I need to know what's wrong, and I need to know fast,

as my foot feels torched in hell-fires grasp.

Pain and appointments now fill my days,

and being incapacitated affects my loved ones ways;

meanwhile inside is a growing malaise.

As I navigate this new unfortunate maze, have I made a mistake?

Now I'm left in this state.

Who am I now? Do you remember?

Because I forget.

When my limb starts to ache, do you remember?

Because I forget.

When my leg is crushed in a vice, I can't think or concentrate.

I am held under the pains constant weight.

Chasing a cure and fiercely grasping at hope,

I feel like I'm balancing on an invisible rope.

My mind is consumed, all other thoughts gone,

except for the pain, and what went wrong.

Who am I now? Where have I gone?

Do you remember? Because I forget.

Will I ever ambulate?

Will I ever feel sand and sea under my feet?

Or is it too late?

Have I ever even walked by the ocean?

I struggle to remember during another pain explosion.

Special memories are so hard to reach.

I must have taken for granted if I ever walked on a beach.

Who am I now? I still forget.

Do you remember? Is this new normal permanent?

Is the blessing of a healthy body and mind only for someone else more fortunate?

I try to remember the phoenix inside-

Rising from flames, her tears heal when she cries.

Reinventing her life after each trauma,

she's fought a mountain of obstacles over and over-

and still had the strength to also heal others.

Where is she now? Was that ever me?

Was she only invented to feel the pain below my knee?

Who am I now? Do you remember?

Because I forget.

Will the pain spread? Will it get worse?

Who can I trust to rid me of this curse?

Will the phoenix rise again?

I can barely reach her now, her tail feathers are so close to my fingers-

as close as my strength of will, will allow.

I reach for rebirth from the fire,

but this time the heat is physically felt, of course not desired.

She struggles to rise inside me again...

Who am I now?

Will I remember?

The music, joy, creativity, learning-

or a meal I made long ago mid-November.

Surrounded by people, I feel so alone.

Even those closes to me cannot imagine the feeling of drilling a screw through a bone-

let alone this new monster infecting my body, my mind, and my home.

The pain is unbearable. No wonder my phoenix cries out with a moan.

I cry and I beg her to once again try.

Turn a corner, put out the flames, fly out of the ashes;

collect these tears cried until we can once again use them to heal the masses.

She cries out to me in the dark.

Inside my box, no one can see.

It's dark in here and lonely.

Do I even remember me?

I would like to be rejoined with my phoenix once more.

Joined together again, we will rise and try to restore.

Reconnect with life, hope, and wisdom-

instead of paying thousands into a broken healthcare system.

When she picks me up we will fly to the light once more.

But patience is required, for some more time I'll remain on this floor.

I'll continue to try with all my might,

but I'm so exhausted now, I can't put up a fight.

After all of my efforts, the unthinkable happened.

So for right now, I am missing in action.

https://www.burningnightscrps.org/

https://www.ncbi.nlm.nih.gov/books/NBK464482/

https://www.medicalnewstoday.com/articles/318867

https://youtu.be/sNq2kP1yOYA?si=iWmuYm-fL7Tg-JN6

https://lyrics.lyricfind.com/lyrics/sumo-cyco-m-i-a