This is a letter from someone who I have never met. I would encourage you to read it carefully for several reasons. The first being that this is a person who was been beaten up badly by the medical system and somehow emerged out the other side doing better. Anything is possible. Historically, I would have never given her a chance of healing. I learned over the last five years of my practice that I never know who will respond and I actively work on staying open to all possibilities.
Her story is about as disturbing as any I have heard, but I have also witnessed many patients in similar circumstances dramatically improve. I am now convinced you can rewire your nervous around any pain regardless of the source. Even phantom limb pain can resolve.
I would like to make several other points:
- Chronic pain is a solvable problem once you understand that it is a disease of the brain and take the correct approach that is appropriate for you.
- Only 10% of surgeons are addressing the known documented variables that pain and outcomes before proceeding with surgery. (1)
- She lost a lot of her life suffering from pain and enduring ineffective interventions. What if she had been taught the approach that eventually allowed her to heal immediately after her initial injury?
- It is stories like these that caused me to quit my surgical practice in order to do what I could to slow down the modern tide of ineffective, expensive, and often risky interventions. It is especially problematic in that the actual solution is readily available and free of risk.
- The depth of suffering from chronic pain is immeasurable and why I call it, “The Abyss.” Research has shown that it has a similar impact on your quality of life as having terminal cancer. (2)
Her story
On August 14, 1999, my husband and I had just finished lunch on our way to Chelan, WA, to catch a boat to start our 7-day mountain/glacier climbing trip in the North Cascade mountains. I reached over with my left hand and buckled my seat belt; I felt like a 1-inch stake was driven down from my neck, shoulder, arm to my hand. Our first wedding anniversary trip ended, and our new life of pain and 11 surgeries began and lasted for the next 20 years.
The surgical saga begins
I began a physical therapy program and was then referred to an orthopedic surgeon who did x-rays, found bone spurs on my clavicle bone and began the surgery process, which did nothing to help my pain (I will try to attach my surgery list below, which explains the process). After two left shoulder and one right shoulder surgeries, my psychologist referred me to a neurosurgeon, who did a C5-C7 fusion. Still, no relief (PT sessions followed each surgery) was found. A vascular doppler study was done, and the correct diagnosis was finally made three years from the date of the incident – I had severe nerve compression in my thoracic outlet area. By the time I had my decompression surgery, the nerves were too damaged for repair (after waiting 1-1/2 years post-surgery to see if the pain would go away) on the outside and inside the nerves. I ended up having a total of 11 surgeries over 19 years related to the 8/14/99 event. CRPS II was added to my diagnoses stemming from my 11/6/2000 right shoulder surgery when too much medication was injected into my shoulder block pre-surgery. I had to train (by thought) my right arm to move again over many weeks – and being totally cared for by my husband.
There have been many other hospitalizations, botched medical procedures, and so many medications I have taken that I wonder how I made it through all of it alive and kicking.
I am a person that does not give up, even though I have felt like doing so many times over the years. After taking oral pain medications for five years, I had an intrathecal pain pump implant done on 7/18/2005 after my pain doctor (I have been going to Pain Services for almost the entire time) told me that no oral pain medications would be able to help me by the time I was 60 years old (I am now 66) if I didn’t switch to the pain pump.
Spinal cord stimulator
The pain pump was helpful at times, but was damaging for me at other times. In Sept. 2018, when I met with the pain surgeon who was going to replace my pump for the second time (every seven years the battery has to be replaced), he told me that the Spinal Cord Stimulator (SCS) therapies have had tremendous technological advancements in the last three years; would I consider switching to the SCS therapy (I had a trial in 2005 for the SCS; it helped, but they could not reach the neck area technically at that point). I had two successful trials done and then had the SCS implant on 10/12/18; I still had Dilaudid medication in my pain pump at that time. After tapering down on the Dilaudid and having the pump taken out on 12/21/18, I went through a horrendous time of withdrawals, anxiety, panic attacks for about five months. It was the hardest experience I have had in these 20 years, which is saying a lot.
Switching direction – Meditation versus Medications
Over the years I read self-help books on meditation therapies, tried many “alternative therapies”, tried non-narcotic medications in my pain pump, went through another University-based 3-week program (to get off medications), tried medical marijuana (which did help but when they legalized marijuana in WA, I could not find a product that worked), did a neuroplasticity “brain class” at Pain Services, and also went through the majority of your DOC program with all the books and worksheets. At times I felt better, but because of being on opioids for pain relief the majority of the 20 years, I was not able to fully understand or experience what meditation meant and what it could do for me.
Breaking free
I am now happier, joyful, calmer, stress-free most of the time, and feel more connected to myself and others for the first time in my life. FYI, I use the “Insight Timer” application on my iPhone that has been phenomenally helpful for my meditation and mindfulness studies and practice. They have free meditations that have and are still helping me learn how to travel this new life of freedom and happiness. I also have researched a lot on the internet and use Podbean for free meditation courses that are offered. My ability to utilize the internet, reading books and taking courses is also a miracle for me, as since 2008 I had chronic migraines that would last for months and also years at a time (24 hours per day). I could not read or use a computer while I had the migraines; it was as debilitating as my pain experiences. I have not had a migraine since April 2019 and count my lucky stars, to say the least!
Thank you for reading a part of my story; there has been so much more that happened, but that would take a book to write. I hope my story can help others in their journey to wellness. I tried to upload my surgery list, but it did not work; I can email it to someone, if you want, as it does help understand my story with additional surgeries I have endured that are related to my pain experiences. Thank you for all that you have done and still do to help people like me.
Taking charge
There are many aspects to her healing, but the main one is that she took control of her care. She engaged in the three aspects of the healing journey:
- Awareness – of the nature of chronic pain and her situation
- Addressing multiple issues simultaneously
- She took control
The essence of solving chronic pain is connecting to your own capacity to heal, which allows you to feel safe. This causes your body’s chemistry to be optimized, which has profound effects on every cell in your body and physical symptoms will improve and frequently resolve. She will continue to improve with time as her brain will keep rewiring. Hers is a truly inspiring story and I am thankful that she took the time to share it.