This is a letter I wrote sometime last year to my doctors. I never sent it. It will give you a background on how my pain came into being. It all started with abdominal pain that would begin shortly after eating. After being told by my primary care physician and a gastroenterologist that it was probably stress, I finally convinced them that I know how my body responds to stress and that this wasn’t it. A C-T scan revealed that my median arcuate ligament, a ligament that attaches to the diaphragm, was wrapping around my celiac artery, one of three arteries that provide blood to the intestines as well as the liver, spleen and various other organs and reducing the blood supply to those organs. The pain was due to this reduced blood flow. Some things have changed since I wrote this and I will bring you up-to-date in a future post soon, but for now…
My eleven year old daughter held me in her arms last night as I fell asleep, crying out in pain, the pain that I have tried my best to manage over the last year and several months since my abdominal surgery, releasing my celiac artery from my median arcuate ligament, removing my appendix, and the two subsequent angiograms, first diagnostic to determine why I was still having pain, and the second to implant a stent as the blood was still not flowing following my surgery due to a continued kinking in the artery and scar tissue build up.
I write you today to help me to connect the dots to figure out why I might still be having pain, over a year later, that torments me daily and interferes with my ability to lead a regular life. I have worked with a pain management specialist, a warm and caring doctor, who has tried, with me, to find some combination of medications and therapeutic means to manage my daily constant pain. I call upon you, each of my doctors, to give some consideration to and think outside of the box and your individual specialties, to help me figure out a possible cause of my pain, even though when I approached you just after the surgery, you each performed some diagnostic measure and told my that, from your perspective, I was healthy.
Since my surgery, I have had an ultrasound to determine if the blood was indeed flowing normally as a result of the stent. I was told it is flowing properly. I had a colonoscopy to see if there might be some other cause of my pain. I am told that it is normal as well. I had an MRI of my back to determine if there is any possible structural causes. I am told there are none. I had an MRA to determine if my vascular system is providing enough blood to my intestines. I am told everything is normal there as well.
Allow me to describe my pain to you. Having had no medication during the night, I awake each morning, sometimes at 7:00 am, many times at 5:00 or 6:00, to a burning sensation that originates in my lower left region toward my back, but very much deep in my body. The burning feeling spreads down my left leg, and up my back radiating out across my back and up toward my shoulders, sometimes reaching up to my neck. As soon as I awaken, I take my pain medicine, the amount depending on the intensity of the pain. In addition to the burning sensation, I have what I can only describe as a squeezing feeling in the same lower left area of my torso. Having had 3 children, the closest feeling I can compare to this pain, is the pain of back labor, the feeling that something is contracting, but not releasing, causing excruciating pain that reduces me to tears many days until the medicine begins to work, usually around 45 minutes later. Somedays, I can manage my pain with my medication.
Other days, not so well. The level of pain each day does fluctuate and does seem to worsen with hormonal changes each month, however, I am unable to note any specific correlations to other causes of increases in pain such as diet, overdoing it, or stress. I want to be clear, however that the pain exists all day every day and fluctuations are with regard to manageable days and unmanageable days in which my current levels of medicine provide little relief. I am very reluctant to increase doses, and am trying desperately to see if a cause can be determined and addressed so as to reduce my need for the medication.
For clarification, the original pain associated with Celiac Artery Compression Syndrome, does seem to be gone as a result of the surgery. However I am left with another pain, perhaps as a result of scar tissue squeezing nerves or damaged or injured nerves associated with the surgery. My goal here is not to find out the why I am left with this pain as much as finding out what can be done to address it.
You are an incredibly smart group of doctors and, I believe, compassionate individuals. I have put my self in your hands in the past and trusted your medical expertise. Unfortunately, due to the nature of modern medicine, doctors are under increased strain, and have little time to confer and follow up once a patient leaves their care and is deemed healthy with regards to the doctor’s specialty. I am 45 years old with 3 children and by all accounts, extremely healthy. However, I am living with a very real pain condition of unknown origin. I am asking you all to reach out beyond the doors of your specialty and to pool your mental resources to imagine any other possibility for my pain which has burdened my since my surgery April 2007. If you can think of any similar cases, or diagnostics which have not been performed, any other doctors who should be consulted, perhaps a neurologist, I welcome your thoughts. I am forced to be the coordinator for my health care and am obviously well educated and researched but am not a medical expert.
I am tired of stabbing in the dark and need guidance and insight here.
I will follow up with a call to you next week, however, please feel free to contact me sooner.