After the introductory paragraphs I will insert a ‘Case
Report’ in full that was written on my treatment, so that everyone will have an
opportunity to read it. As you read on
you will understand why this was a big undertaking, and something that my own Pain
Management doctor thought would never happen.
Shall we start?
Who was I 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), volunteer (with Young Life, Rising Tide and Orangewood Children’s
Foundation), mentor, had been on the board for Tustin Eastern Little League,
enjoyed softball, kayaking, outdoor activities, baseball, gardening,
landscaping, and staying very busy. I
was one of those individuals that was always busy either with our family,
volunteering or just helping friends or family.
I just loved to be active and busy.
That all changed after December, 2006 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 what we
could have never imagined.
Unfortunately for me, my sprained ankle just wasn’t
healing properly. 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 – to a ruptured
Posterior Tibial Tendon. This change of
diagnosis 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 cutting into the Tibial Nerves
and the Lateral Plantar Nerve. Other
errors were made during this, the one defining surgery that triggered my
Complex Regional Pain Syndrome. This
ended with me having pain that was abnormal for the circumstances, and I was
also left with a little toe that was in continual spasms or continually moving
24/7. (Characterized as dystonia.) The
Podiatrist could not explain what was happening and sent me to several people
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 over
the long term.
I was told by some colleagues in the medical field that I
had to find out for sure if I had this condition ASAP, because if I did my life
as I knew it could end! I thought they
were exaggerating. How could any
condition really be that bad? Honestly,
I thought they were just yanking my chain.
I finally got into a top Pain Management doctor who was
familiar with Complex Regional Pain Syndrome; he held two doctorates and was an
Associate Professor. 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. Bad news was that I did indeed have Complex
Regional Pain Syndrome. 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!
How would you define Complex Regional
Pain Syndrome?
Somebody who has chronic pain is living with a daily challenge to cope with
pain that does not have a quick fix, sometimes it 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 in chronic pain 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 Chronic Pain, CRPS/RSD and many
neurological pain syndromes are also known as ‘Invisible’ pain conditions.
How are people's lives affected by this illness? What changes when they start
dealing with this illness?
Your life is altered, your dreams for the
future are never going to be exactly as you planned them to be, you have to
change your expectations in life because now you are dealing with a condition
with chronic pain, and now that you have pain you are not physically able to do
things the way you used to. So it alters your life. It's a matter of learning
to live with it, around it and accept the changes that have come to your
life. 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 this illness different from others illnesses?
You have to face this for the rest of
your life, unless you are one of the few that can get into remission. Some
people go to physical therapy for 6 to 8 weeks and then they get better. There
is no cure for Complex Regional Pain Syndrome (CRPS). Some people have an
injury and they go through their process and the pain; medication, PT,
injections, blocks and all of a sudden they graduate and then they're able
to get into remission and get back to their lives (this is not the
norm). People like me that don’t respond to normal treatments go through
aggressive treatment protocols that can include: heavy medications, injections,
PT, regional blocks, lumbar sympathetic blocks, and maybe even Spinal Cord
Stimulators. Yes, I did all of that and
had no improvement. As a matter of fact
everything they did to treat me made me worse!
I was told my case was one of the worse my Pain Management doctor had
ever seen. It was very aggressive and
extremely volatile! It started out in my
left foot and ankle, moved into my back when they put in a Spinal Cord
Stimulator (this had never happened before to previous patients), then I had a
build-up of scar tissue on my Dura of the spine that would have paralyzed me,
so the final Spinal Cord Stimulator had to be removed. At this point my Pain Management doctor was
giving up! My CRPS kept trying to
‘mirror’ to my right leg, but we were able to stop it each time. 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 Chronic Pain patient on a
cocktail of pain meds to just live… 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 moving - getting worse
(it was in my left foot/ankle, my entire back and had recently moved into my
pelvic region), I knew God had other plans for me and I just had to figure out
where that path was going to lead me.
From here I will let Complex Regional
Pain Syndrome Traci’s Case Report tell the rest of my story. I know for some it is hard to believe, but
trust me with everything that I went through with treatments in the United
States (Traditional Western Medicine), in Frankfurt, German (Integrative
Medicine), Mexico (Integrative Medicine), and then back to the US to be treated
by a highly recommended clinic… I think I can say I looked at everything, tried
just about everything and found what worked for me. I have heard from others with CRPS that they
have tried hypnosis and it just doesn’t work.
I too tried hypnosis prior to going back to be treated in 2013, my
previous treatments with hypnosis didn’t help me – then again they were not well
versed in chronic pain and not certified in ‘Pain Management’ either. When I was referred to the last clinic I was
told by everyone that it was the best, that they did things differently, and
they do – they work with the biology and physiology of the brain and how it
causes Chronic Pain. It is a completely
different way of looking at things, working with Chronic Pain and finding a
solution for the pain. 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!
Complex Regional Pain Syndrome Traci’s Case Report
[Feb., 2014]
My Name is Traci. I am a 44 year old female that was
diagnosed with Complex Regional Pain Syndrome (CRPS) in January, 2008.
This diagnosis came following a sprained ankle in 2006 that didn’t heal
properly.
I was then referred to a DPM (Doctor of Podiatric
Medicine) for assessment. After conservative treatment that included a CAM
Boot, Physical Therapy and cortisone shots, the pain continued.
The DPM followed with three (3) surgeries of which
several errors were made, including cutting the Tibial Nerves, Lateral Plantar
Nerve, Rupturing the Posterior Tibial Tendon, and making the incision in the
wrong place.
I then had two (2) surgeries by a top Orthopedic Foot and
Ankle Surgeon to reconstruct my Posterior Tibial Tendon, and later he completed
a Tarsal Tunnel Release hoping to help with the nerve pain.
During these surgeries, my pain continued to increase
disproportionate to what should have been occurring.
In 2008, I was officially diagnosed with CRPS by my
Pain Management doctor, and he put together an aggressive treatment plan to try
to treat my condition. Initially, he thought he could get my condition
under control within 6 months to a year, and told me this could be one of the
most devastating diagnoses of my life.
He started with putting me on a lengthy list of opioid
pain medications that included: Methadone, Dilaudid, Ketamine (oral and
topical), and more…
In addition to these medications he tried regional blocks
with no results, and then we did 13 Lumbar Sympathetic Blocks (the last one
shut down my adrenal glands, landing me in the hospital for several days). Thus, my PM Doc 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 HBOT. I did 25-30 sessions of HBOT, which I
had heard could help to relieve pain, but did not get relief. The next
step was a SCS trial which was a success. Yet once the real
spinal cord stimulator (SCS) was implanted it functioned in-properly and caused
swelling every time the battery was charged. Thus, I had to have a 2nd
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 full CRPS in my back.
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 (2011).
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. Therefore, you may have to do your best with pain meds.”
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 Frankfurt, Germany, for treatment of my CRPS.
The first trip, we started with building up my immune
system, Stem Cells (utilizing my own blood), Thymus Cell Extract, Blood Ozone
Therapy, Neural Therapy with Ozone, Myers Cocktail IV’s, Lymphatic Massages,
Physical Therapy and Detoxing.
On my second trip to Frankfurt, we noticed there was one
area where they removed the SCS that was problematic. Following an
ultrasound, they discovered there was something foreign in the incision.
The Medical Director in Germany re-opened this area and found there was some
gauze left in my incision from when the SCS was removed. This was cleaned
up, left open to heal, debrided on a daily basis until it closed on its own.
During this trip and my subsequent trips to Germany, I
completed the following types of treatments (this is inclusive of the last
three trips):
Neural Therapy with Ozone
Ionization
Ozone Therapy
Blood Ozone Therapy
Thymus Cell Therapy
Regional Hyperthermia (3x/day –
5days/week: first CRPS patient in world to be treated with Regional
Hyperthermia)
Alpha Lipoic IV’s
Myers Cocktail IV’s
Homeopathic Injections
Regeneris Therapy (RNA Cell
Therapy – 4 weeks treatment protocol)
PK Protocol
Physical Therapy and Massage
Bodywork
(Last trip to Germany was August-September, 2013).
I still feel that my trips to Germany
were important in my over-all treatment process as they were able to
shrink the area(s) of my CRPS and decrease my pain levels overall. The
problem I had was that I was unable to stay in Germany long-term to get into
remission, and therefore the treatments didn’t hold. Following my last trip, my
comfort levels remained at a 5 for approximately six weeks and then started to
increase again.
Contacted the Medical Director in Germany and it was
suggested to do two more rounds of Regeneris or return to Frankfurt for
continued treatment.
Between my trips to Germany, I was also treated in Mexico
in tandem with the Medical Director from Frankfurt.
In Mexico, he treated me with the following over 3
different stays:
Insulin Potentiated Therapy
(IPT – utilizing pain meds)
PK Protocol
Physical Therapy
Chiro
Alpha Lipoic IV’s
Myers Cocktail IV’s
Rife
Acuscope
Neural Therapy with Ozone
Ondamed Biofeedback
HBOT and detox
Regional Hyperthermia
These treatments only decreased my pain/comfort levels to
a 6-7. My last trip to Mexico was July, 2013.
Following my last trip from Germany I contacted highly
regard clinic known for hypnosis for possible treatment. I had previously done some hypnosis sessions,
but was referred here due to their background and being known for Pain
Management. After speaking we set up a
time to be seen mid-November, 2013.
I was told that it would be a week long intensive session
that would include our time together and homework each evening (i.e. reading,
listening to CD’s, etc…). To me, this was an exciting avenue to go down
and I was 100% dedicated to get the most out of everything that was set before.
Day one, I walked in with what I formerly called “Pain
Levels”, and now have changed, calling them “Comfort Levels” up in the 8-9
range. The evening prior they were at a 10+ due to the full day of travel
to get from CA to my destination. With a smile on my face, regardless of
where my ‘Comfort Levels’ were, we started our first session. Little did
I know, although I had hoped and prayed it would be, that my ‘Comfort Levels’
would drop to a ZERO by the end of the week!
Over the week we used a combination of:
Hypnosis
Imagery / Meditation
Biofeedback
Light/Sound Therapy
“Issue Solution Training”
and learning Self-Hypnosis
While working together the first day, it was discovered
that I was also dealing with a case of PTSD due to everything that I had dealt
with over the years; the treatments; being given medications for anesthesia and
not having them work – then listening to the physicians; 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; going through some treatments that were
extremely uncomfortable; and negative comments from physicians about the
possible outcome of my situation. This did not surprise me to say the
least.
From the first day to the last day I saw progress.
Thursday of our week together, I was scheduled for a
massage. To be honest, I was a bit reluctant and worried walking to that
appointment due to the fact that I had not been able to tolerate a massage on
my back since 2011 when CRPS had moved into my back. I knew that my
‘Comfort Level’ had already dropped to a ZERO in my back, but I wasn’t sure if
I trusted it enough to do the massage. I
was pleasantly surprised to see how relaxed and comfortable I was during the
massage. I had no pain in my back and I was able to keep my ‘Comfort
Level’ at a Zero. To me this was a test,
and it showed me what I had accomplished to that point was holding and would
continue to get better.
The other huge thing that they were able to assist me
with was a continual spasm or uncontrollable motor deficiency in the little toe
on my left foot. This was in addition to my CRPS, and it was due to a
nicked Lateral Plantar Nerve. I had had many doctors consult with me
regarding this, and I was always told that they had never seen anything like
it. They had no idea what to do, etc. Thus, I had been dealing/living with my
little toe being in continual spams since 2007, and in 3 days, we were able to
get my little to stop moving! Wow, this was a mechanical problem and it
had stopped. This was huge! Talk about bringing a smile to my face.
It was intriguing to see how the process of hypnosis could access areas of the
brain to stop the continuous signals being sent out.
Yes, it was an intense week of learning, working, and
following all of the instructions given me, but to have my ‘Comfort Levels’
drop to ZERO for the first time since 2006 when I sprained my ankle, then was
diagnosed with Complex Regional Pain Syndrome (CRPS), it was well worth it!
Prior to leaving I was given a copy of all of my
sessions, given my own Protesus System to utilize, copies of a couple of books
to read, and instructions to continue with Self Hypnosis on a daily basis, in
addition to listening to the CD’s of our sessions.
One of the things that I learned was that every cell has
a memory. It is essential to provide the cells with a new memory other
than pain, and when you do this, new memories will take hold as the cells
regenerate every 90 days. Thus, in approximately 90 days after arriving home,
new memories should be strong!
When I arrived home 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.
This was after 5 days with of treatment with hypnosis in a multi-therapeutic
approach.
Once home and settled, I put myself into a routine that
included listening to the CDs of the sessions that I had completed, doing
self-hypnosis, and utilizing the tools given to me. After the first week home, I was no longer
utilizing my cane to walk. I still needed to work on my gait, but this
was a big milestone. During this time, I also met with my Pain Management
doctor. He was used to me going to
Germany for treatment and coming back with their protocols, but this time, he
had no idea what to expect. When he entered the exam room, I was sitting
there with socks and running shoes on, no cane and long pants that could touch
my ankle and medial side of my foot.
My Pain Management doctor looked at me, pushed back on
his stool, and started looking around the room. He was in disbelief at what he
was seeing. He then asked me to take off my left shoe and sock, because
he wanted to see if my left little toe was still spasming or doing the
rhythmical movement. When he saw that it was not moving, I had shoes on,
my coloration was not off in my foot, and I was feeling great, he was
dumbfounded. He next words were, “I’m being
punked. Where are the cameras and how are you doing this?” I had to
laugh. He wanted to know what I did in my treatments, but since he
doesn’t understand what I did, he was skeptical. Then when I asked him to take me off of my
pain medications, he was awestruck. He hesitated, to say the least,
because he wasn’t sure this was going to hold. As I told him, I am
confident in where I am and what I have accomplished. I have no pain at
this time, so I don’t feel that I should continue on pain medications, and I
asked again to be titrated off of them.
Week by week, I continued to see progress. Having
the ability to walk my dog at the park with no pain, completely comfortable,
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, these are
all the rewards of learning self-hypnosis and following through with what I was
taught during my treatment.
One month to the date after arriving home from my
treatment, my husband and I set a date to go to Disneyland and Disney’s
California Adventure. We spent close to 10 hours at both parks in total,
walking, riding the rides, partaking in the attractions. Believe me, there was
plenty of walking. This was all without a cane, in running shoes, and
with complete comfort.
To think that I would be doing this with my husband one
month after treatment is astonishing to me. It is refreshing to think
that there is something out there that is non-invasive that can help so many
Pain Management patients if they would take the time to learn it, do it, and
dedicate themselves to it.
---------------
Now you have a better
understanding of what Complex Regional Pain Syndrome is, how it affects a
patient, just a little bit about what we go through and some of the treatments
we endure. I was a fortunate patient in
that I was able to get into remission in November, 2013.
I was determined to find a treatment somewhere, some way to help me regain my
life, and I did it! I went from not
being able to have anything touch the areas where I had CRPS to being able to
put a sock on my foot, to wearing a shoe and not being in pain. I got my life back.
This is why I am so passionate about sharing my story, getting information out
about chronic pain, and trying to educate as many people as possible on the
effects of CRPS/RSD and chronic pain syndromes.
Let me ask this question before you read on… if you or a
loved one are willing to look at opioid therapy, spinal cord stimulators, pain
pumps and other invasive treatments that are only bandaides… why are you not
willing to seriously look at other treatments that have worked on other CRPS/RSD
and chronic pain patients? Is it because
your doctor(s) are not talking to you about these types of treatments? Possibly because the pharmaceutical companies
are not advertising it or the insurance companies are not pushing it? Yes, I
know that many patients, like me, find out about these treatment options after
going through the ringer. But, if this
is a way to get your life back, to regain what you lost, and to start fresh… is
it not worth taking a serious look at your options? Please
take a serious look at what will really work to help you or your loved one in
the long run. No, not every treatment
is right for every patient, but if it is non-invasive is it not worth looking
into?
** Since this article / ‘Case Study’ was originally posted in February, 2014; I
have opened my own office in Irvine, California and am working with
patients that have been diagnosed with CRPS/RSD, neuropathic pain,
Fibromyalgia, cancer pain, phantom limb pain, PTSD, migraines,
etc... (After I got into remission I went back and I received my certifications through the National Guild of
Hypnotists (NGH), and also obtained advanced certifications in ‘Pain Management
and Cancer Patient Care’.)
I have a dynamic background
from a perspective that few if any one other Certified Instructor and Hypnotist can offer. My background as a chronic pain patient
diagnosed with Complex Regional Pain Syndrome (CRPS), someone that was treated
with/utilized hypnosis to get into remission, and
is now a practicing hypnotist is rare. I
have patients that contact me from all over the United States and
Internationally.
If you have questions
regarding CRPS, my story or would like information on how you or a loved one
can find relief from chronic pain please contact me.
714.717.6633
