About HCT Foundation, Inc.

---

My name is Dr. Traci Patterson.   First and foremost, I am a CRPS survivor.  It’s also important to know who I was prior to my diagnosis with Complex Regional Pain Syndrome (CRPS).

Prior to my diagnosis with CRPS, I was a healthy, active, mother, wife, healthcare executive (at the top of my professional career), a volunteer, played softball, enjoyed outdoor activities, and staying very busy.  I was one of those individuals that was always busy with our family, volunteering or just helping friends.  

That all changed after December 2005 when I stepped over a box in our garage and turned my ankle.  What started out as a simple sprained ankle, triggered dominoes to something that I could have never imagined.

Unfortunately, my sprained ankle wasn’t healing as quickly as it should have.  I had many x-rays done and there was no fracture showing.   Trust me - a fracture would have been so much easier.  I was referred to a local podiatrist (DPM) that told me that I had everything from plantar fasciitis – to an accessory Navicular.  This change of diagnoses was unfortunate for me and came after what I found out later to be unnecessary surgeries.  One of the surgeries was a myriad of errors that included the incision being made in the wrong area, cutting into the tibial nerves, nicking the lateral plantar nerve, rupturing the posterior tibial tendon, and so much more.   The errors made during this surgery were unfathomable and were the defining operation that triggered my CRPS.   

This was the jumping off point that triggered pain that was unimaginable, and I was also left with a little toe that was in continual spasms (continually moving 24/7). The podiatrist could not explain what was happening and sent me to several specialists for them to assess the situation.  I also sought out other opinions, and I was finally told that I needed to see a pain management doctor to find out if I could possibly have what they called Complex Regional Pain Syndrome.  This was something I had never heard of.  I had no idea what it was, how it would or could affect me, or what it would mean in the long term.

I finally got into a top pain management doctor who was familiar with CRPS.  He held two doctorates and was an associate professor at the university.  He spent just short of two hours with me assessing my left foot and ankle, my little toe and going over my records.  The more time we spent together the more serious he looked.  When we were wrapping up - he said he had good and bad news.  The bad news was that I did indeed have CRPS.   The good news was that he was hopeful that we caught it early enough that he could treat it aggressively and within the next 6 months to a year get it into remission.  My heart sank, my stomach turned, those were not the words that I wanted to hear, and I just wanted to tell him that he must have made a BIG mistake! 

Some insight into CRPS.

Somebody who is diagnosed with CRPS is living with a daily challenge to cope with pain that does not have a quick fix, a diagnosis that does not have a cure, and the best you can hope for is to get into remission. As a patient you have to learn how to alter your dreams and bring focus and meaning back to your life.   Patients living with CRPS also have to cope with others looking at them, not understanding what they are trying to deal with day in and day out, because most people only see a glimpse of what you are going through and to them you look normal.  You are not in a cast, you are not necessarily in the hospital, and you are home on medication dealing with a horrible pain condition that is wreaking havoc on your body.  This is why CRPS and many neurological pain syndromes are also known as ‘Invisible’ pain conditions. 

How are people's lives affected by CRPS?

Your life is altered, your dreams for the future may change, you have to change your expectations because now you are dealing with a condition that is classified as a ‘rare incurable disease’.  People with CRPS are not physically able to do things the way they used to. So, it alters life.

It's a matter of learning to live in the moment and accept the changes that have come to your life.   Acceptance does not mean throwing in the towel.  I’m talking about accepting where you are at that moment in time.  Coming to terms with the career that you had - may now be gone.   The many activities that you were involved with - you now cannot continue - due to high pain levels, and it is very hard for others to understand this.  People that once stood by your side start to disappear as they just don’t understand why you are unable to do what you used to.  Your life as you once knew it changes, and this isn’t even talking about the impact it has on your family.

Why is CRPS different from others diagnoses?

CRPS doesn’t have a cure at this time.  Therefore, you may have to face this for the rest of your life - unless you are able to get into remission.  That isn’t to say that you can’t manage to keep the pain at a lower level to live your life, or better yet – get into long-term remission.  Both are possible.

Most CRPS patients don’t respond to traditional/allopathic treatments.   Physicians are used to treating symptoms of pain.   Pain management doctors have a protocol or flow chart.  Evaluate the patients, find a diagnosis, prescribe medication, send to physical or occupational therapy, local or regional blocks, stellate or sympathetic blocks, and then spinal cord stimulators.  

For me the struggle was real.  I was put on a lengthy list of opioid pain medications that included: Methadone, Dilaudid, Ketamine (oral and topical), and more…

In addition to these medications, they tried regional blocks with no results, and then we did 13 lumbar sympathetic blocks (the last one shut down my adrenals, landing me in the hospital).  Thus, my pain management doctor stopped any further blocks, and I was then told I had to get a spinal cord stimulator (SCS).  In addition to the sympathetic blocks, I also received a prescription from my pain management doctor to undergo hyperbaric oxygen therapy (HBOT).   I did approximately 30 sessions of HBOT, which I had heard could help CRPS patients get into remission, but I did not get relief.  The next step was a SCS trial which was a success. Yet once the real spinal cord stimulator was implanted it functioned in-properly and caused swelling every time the battery was charged.  Thus, I had to have a second surgery to change out the SCS battery. It was at this time that I started to notice some CRPS pain in my back.  I had continued trouble with the SCS, so the system was removed and replaced (Medtronic to Boston Scientific) – no precautions were taken to make sure the CRPS didn’t move into the back.

Following this surgery, I had CRPS in my hips, back and shoulders.  I was told by the neurosurgeon this was the first time he had this happen.  I had further issues with the Boston Scientific SCS, which included a build-up of scar tissue on the dura of my spine.  Upon further review, it was found in several articles that SCS in rare cases could cause scar tissue on the dura that would lead to paralysis.  Therefore, my SCS was removed/explanted in2011.

It was at this time that my pain management doctor told me, “…after all of this I’m afraid to touch you. There is nothing else I can do at this time.  We will do your best to manage your pain with medication.”

Traditional medicine progressed my CRPS.  I was told my case was one of the worst my pain management doctor had ever seen.  I was told, “You have a very aggressive and extremely volatile case of CRPS.”  It started out in my left foot and ankle, moved up my leg, and following the placement of my SCS it spread into my hips, back and shoulders.  Then I had a build-up of scar tissue on the dura of the spine that could have paralyzed me, so the final SCS had to be removed.  At this point my pain management doctor and medical team gave up.

How was I ever going to get better?  I refused to give up, my life had already been drastically altered, I had been living life as a CRPS patient on a cocktail of pain meds to just survive.  I just knew in my heart that there had to be some answer out there, some hope, some way of getting my CRPS into remission and I refused to give up.

At this point in my life, I knew I had already been to hell and back, my CRPS was spreading, I knew God had other plans for me and I just had to figure out where that path was going to lead me.

Three weeks following my post-op of the SCS removal, I flew to Frankfurt, Germany, for further treatment.  This was the first of my four trips over to Germany, for treatment of my CRPS.

During my treatment(s) I was able to drop my pain levels by 40-50% but within weeks of being home my pain would spike back up.  Following my last trip, my pain remained at a 5/10 for approximately six weeks and then started to increase again.

Between my trips to Germany, I was also treated in Mexico.  These treatments only decreased my pain levels to a 6-7/10.  

Following my last trip to Germany I sought out a new treatment option.  I couldn’t continue being a human guinea pig in other countries.   So, I completed a weeklong intensive with a focus on the central nervous system, autonomic nervous system, and mind-body connection.  

The evening prior to starting the intensive my pain was a 10+ due to the full day of travel.   During my intensive we worked with clinical hypnosis, neuroplasticity, biofeedback, light/sound therapy, etc.  Ultimately, it was this combination that helped me get into remission.

I didn’t fully understand it at the time, but now I know the importance of getting out of fight or flight, to balance the autonomic nervous system, and to work with neuroplasticity.  

I also discovered that I was dealing with a case of PTSD due to everything that I had dealt with over the years.  From treatments that increased my pain and put my body into shock - being given medications for anesthesia and not having them work, and then listening to the physician(s) in the OR - having my pain management doctor tell me that there was nothing more he could do and I would just have to live with the pain -  negative comments from physicians about the possible outcome of my situation – and so much more.  This did not surprise me to say the least.

When I arrived home from my intensive, I was barraged with questions because friends and family members immediately noticed a marked difference in my demeanor, a bigger smile on my face, my ability to put weight on my left foot for the first time since 2006, and an overall sense of well-being.  

Week by week, I continued to see progress.  Having the ability to walk my dog at the park with no pain, completing household chores with no discomfort, babysitting my nephew who was 6 months old with complete confidence, and spending time with my family in activities that I would not have been able to have done previously.  

I was fortunate that I was able to get into remission in November 2013, and I’m thrilled to say I’ve been in long-term remission for over a decade now!

I was determined to find a treatment somewhere, some way to help me regain my life, and I did it.   I went from just merely surviving to thriving.  I got my life back, and I want other CRPS patients to know it is possible.

This is why I am so passionate about sharing my story, advocating for CRPS patients, trying to educate as many people as possible on the effects of CRPS, and providing compassionate care to those living with CRPS and other chronic pain diagnoses.

If traditional treatments aren’t helping perhaps it’s time to start looking outside the box at integrative treatment options that can help.   What works for one will not necessarily work for all, but if it is successful for one it is likely going to be successful for many.

Holistic Centered Treatment is the only program developed by a CRPS survivor for CRPS patients.  I believe it’s time to take a new look at CRPS and chronic pain. The days of just treating the symptoms are over.  CRPS and many chronic pain conditions are complex diagnoses that can lead to a pandemic of uncertainty and suffering for millions of people around the globe.

The challenges range from uncertain diagnostics and testing - to ineffective treatments.    CRPS and chronic pain diagnoses are multi-faceted, systemic diagnoses requiring a multilevel integrative approach.   

If you would like a more in-depth view of my journey with CRPS – I encourage you to read my book.  "Stepping Outside the Box: A Journey from Invisible Pain to Invincible Living."  It's available on Amazon.  

I believe that one person can make a difference, but together we can change the world!