3 years, $30,000+, No Answers
Sorry, this is rather long.
I started having minor, just weird chest pressure around my sternum three years ago after a C-section with my fourth and last child. Over that time, it has consistently worsened and become constant. Light chest pressure grew into very intense pressure, cramping in my chest—especially right below the sternum—stabbing pain between my shoulder blades and down a few inches, and aching pain all around the bottom of my ribs, like I have a massive zip tie squeezing me. I find if i do any yard work or even lift my three year old, I get what i guess i would call a flare up. About eight months ago, it started waking me every night.
Deep breathing does not cause additional pain, and it really annoys me when doctors keep putting that in my charts. Deep breaths actually give me a split second of relief. It’s not relief from the pain as much as relief from the little alarms going off in my head—like the alarms you get when you injure yourself and know you need to go to the ER. It’s hard to explain. It is definitely harder to take a deep breath or even yawn because it feels like I’m wearing a very tight corset.
I’ve had several chest MRIs (with and without contrast), CT scans, echocardiograms, X-rays, a V/Q nuclear medicine scan, endoscopy, colonoscopy, lung testing, and countless blood tests. Everything has been normal. I've never even had low oxygen levels, high blood pressure or high cholesteral,,, I'm not even prediabetic.
I’ve also had two sternum injections when they thought it might be costochondritis and have done over a year and a half of chiropractic care, PT, cold laser, acupuncture, and dry needling. All of this has caused me to max out my health insurance out-of-pocket limit three years in a row. This year, I maxed it out within six months.
I mentioned looking at my thoracic spine about six months ago, and my primary care doctor refused. He literally told me my problem was that I was overweight. Which I am, but I’m not obese and i dont believe that explained three years of these symptoms. Especially because i am now 20lbs lighter than when it started.
As for my lumbar spine, I can’t remember ever not having lower-back pain. Less than two years ago, I started having leg pain just from walking, along with periodic weakness. An ABI test showed my circulation was perfectly normal, just like everything else. I used the leg symptoms as my way into seeing a physiatrist a few months ago.
My lumbar MRI showed several disc bulges, severe foraminal narrowing, and a tear, as I suspected. Only then, after almost three years, did I convince the physiatrist to order a thoracic MRI. It showed a small disc bulge and moderate foraminal narrowing at T10/T11, which actually seems to have given doctors even more reason to dismiss me. They tell me my symptoms don’t line up with that level and that people don’t have symptoms from findings like mine.
After three “specialists”, I finally found someone willing to give me a thoracic steroid injection. When he injected the medication, I felt a massive, frightening pressure directly in my chest that lasted maybe two or three seconds. I actually felt worse for the first few days, but on the third night, I slept through the night for the first time in many months. That was two months ago, and the roughly 30% relief I experienced is now all but a memory.
I have an appointment with a spine surgeon in a week. The doctor who gave me the referral told me it was basically a waste of time and suggested a spinal cord stimulator instead. He said that because my symptoms don’t line up with T10/T11, the surgeon won’t even listen to me. My chiropractor and PT believe it could be referred pain. I’m also worried that the radiologist who reviewed my MRI may have missed or underemphasized something, especially since symptomatic thoracic problems are relatively rare.
The pain I suspect is caused by my lumbar problems is definitely higher on a traditional pain scale than the pain I associate with my thoracic spine. But I would take the lumbar problems over the thoracic problems any day—even now, with constant leg pain and occasional leg weakness. With the thoracic symptoms, the constant pressure, pain, and alarms going off in my head just suck the energy right out of me. I can barely function.
I compare it to getting a few stitches versus having food poisoning and vomiting. Yes, the stitches may technically hurt more, but the food poisoning is absolutely miserable and draining. I’ll take the stitches any day.
Consistent PT absolutely helps my lower-back pain, to the point that I can sometimes go weeks without pain. PT doesn’t seem to have much effect on my leg pain, but the lumbar injection made the leg pain go away during normal activities, except with exercise beyond walking. Unfortunately, that relief only lasted a few months.
PT has had no effect on my thoracic pain. As time goes on, I find myself unable to tolerate more and more of the thoracic exercises and stretches. I'm thankfully to have a good job and make decent money, but i can't keep paying 10 to 12 thousand a year and weeks off work. It's getting harder and harder to get out of bed. I'm starting to be consistently late to work. I can't focus during the day. I can't even pick up my children or do yard work. I can't be on my feet for long periods of time. Because of that i haven't take my kids to the zoo, hiking or the aquarium in over a year.