I mentioned a while ago that I was suffering from a health issue, and I am happy to report that it is finally being resolved! I would like to share my saga, if only that it might help someone else.
Some of you might remember I had a cervical herniated disc years ago, and a fusion surgery in 2022. Afterwards I improved slowly, but about a year ago started to have problems again. They were similar in that my neck hurt constantly and I got terrible headaches, but otherwise the symptoms were (apparently) odd.
I began seeing doctors here in Missoula. Right away they found that I had another herniated disc in my neck, one below the previous one (I think it's a genetic issue). But the message I got was: it just doesn't look bad enough for surgery, despite the fact that I got terrible headaches when I sat, and so I didn't ... sit. They said my symptoms weren't "textbook." I got a steroid shot, which helped tremendously, but only for a week. I tried everything else commonly recommended: PT, massage, etc. Nothing helped, and I continued to get worse.
Over 10 months I saw 4 surgeons, 4 other doctors, and was rejected by the Mayo Clinic twice. They listened to me tell them that my hands and feet hurt constantly, the headaches were unbearable, my digestion and temperature regulation were wacky, my eyes hurt all the time, and if I sat or did anything remotely strenuous my mouth and arms went numb and everything else got worse. And the answer was: the disc isn't causing your problems. Some added that I must be "oversensitive," or "have emotional issues" because I'm a woman. Yes, at this point I wanted to kick these men in the ....
They ran a million tests. Which all cost a fortune, of course. Insurance only paid for some of it. And they didn't find anything that could explain my pain.
My husband and I were completely baffled. It seemed like their goal was to get me out of the office as quickly as possible. But these were appointments that took weeks or months to get, so time was passing painfully, and after each dismissal we found ourselves back to square one.
All through this my husband was searching online, trying to find answers. Before each appointment he compiled lists of symptoms (in case we forgot any), and a timeline. We thought that if we just saw one more doctor, they would be a little smarter and figure out my problem.
Finally, towards the end, my husband found a place near Seattle that had a sitting MRI. All the other MRI's I'd had were laying down, and all my symptoms got better when I laid down, so we reasoned a sitting MRI might show something different. No doctor we saw knew anything about this, btw.
When I got the new MRI, the radiologist's report said that the herniated disc was flattening my spinal cord. This is called myelopathy. When we looked it up we found that it could cause ALL the symptoms I was having! The spinal cord brings messages from the brain to the rest of the body, and when this is disrupted it can cause problems with the autonomic nervous system, which regulates the things in your body that you can't directly control: heart rate, blood pressure, respiration, digestion, etc., which were all things I was having trouble with. For the last 2 months in fact, I was almost completely bed-ridden. If I stood for more than 10 minutes my heart would race and I would feel like I was going to pass out.
The physical medicine doctor I was seeing at the time sent off urgent messages to the surgeons I had already seen, and one by one they dismissed the new MRI! It still didn't look bad enough, they said.
So the phys-med doc referred us to one more neurosurgeon, a Dr. Larson in Coeur d'Alene, ID (3 hours from Missoula). We were dismayed to see that he didn't take insurance, but at that point were desperate. We met with him and he quickly said - surgery is an absolute no-brainer. He got me in two weeks later for surgery. Once inside he found that the disc was worse than it looked in every MRI - part of it had broken off and was lodged against my spinal cord. When I woke up, except for the pain from the surgery itself, I was completely better!!
In hindsight we believe that the first 4 surgeons must have been restricted by the hospitals/clinics they worked for, and the insurance companies. We believe they had a checklist, and my case was unusual enough not to check all the boxes quite right, even though the suffering was very real. It doesn’t seem that they are allowed to think outside of those boxes. They consistently recited statistics, rather than treating me as an individual. The doctor who finally helped me says the reason he doesn't take insurance is because it allows him to “focus on what’s best for each patient.”
The worst part of the last 11 months was the emotional toll. I lost hope over and over. But I was lucky. My husband was by my side through it all, often waiting on me hand and foot. He was even NICE about it, the whole time. Even when I wasn't. Haha. My little dog, Meep, was glued to my side night and day - best nursemaid ever. My son regaled me with stories from the outside, which provided much needed distraction. My family and friends kept checking on me, despite so many months of listening to me complain and despair.
I am now 3 weeks post surgery. Every day I feel a little better. At 6 weeks I can start doing physical therapy, and can address the muscles in my back and neck that have been busy guarding my “injury” for so long that they will need to be retaught how to operate. I have been visiting my studio a little more each day, doing as much as I can. Painting requires more turning of my head than I can do at the moment, so I’ll do that when I am able. Meanwhile I will share some paintings from back when I could still do them. Thank you for reading!
