1. Some of you know I struggle with chronic pain and weakness in my legs secondary to nerve damage. The spinal nerves were squeezed until the damage was permanent. The diagnosis was missed for many years by two primary care doctors and two board certified specialists. When it finally was diagnosed I already had permanent damage.
  2. My wonderful compassionate spine surgeon had a massive heart attack last December. He had unexpected complications and had to leave his medical practice permanently.
    He was consulted about my case after I was diagnosed by a pain specialist, and did my lumbar laminectomy in 2014.
  3. I recently started having symptoms in my right (dominant) arm similar to my leg symptoms.
    Some nights I am up crying with excruciating burning pain. I cannot sleep in my bed. I have to sleep in a recliner with my head elevated no less than 75°. I am on the maximum level of pain meds according to US CDC guidelines.
  4. I spend most of my time sitting still wearing a soft c-spine collar, applying heat or ice, and trying to distract myself from the pain by varying among watching TV, participating in social media, listening to music, reading, and playing a few games online.
  5. I had to wait 6 or 7 weeks for an appointment at a different spine center because my doctor no longer practices. It takes longer for a new patient to get an appointment.
    Today I finally had my first appointment at a large University-based spine center with nationally ranked physicians and programs.
  6. I brought the previously-completed CT of my cervical spine, my medical records, and all the required forms.
  7. I was examined first by the nurse practitioner followed by the physician. They reviewed my records and tests and spent a good amount of time with me.
  8. I like both practitioners and they are good listeners. The physician has three board certifications in the area of spine care and both seem knowledgeable.
  9. They want me to have another test, an EMG to assess the response of my arm muscles to stimulation. It will be two months before they have another opening for the follow-up appointment after the EMG.
  10. Here are the official two diagnoses that arose from today's visit: cervical degenerative disc disease and cervical radicular pain. I actually knew that already because those are the same as my lumbar spine diagnoses.
    The lower back problems are primarily at L3-4-5. The cervical problem is high up at the level of C4. There may also be some issues at C6-7.
  11. There is no additional medication they can prescribe that can help with the pain. We have the medication in the US, but doctors here can't or won't prescribe them.
    This is complex, but largely because in the US, health care is largely controlled by government regulations and insurance companies. Our pharmaceutical industry is out of control like crazy yet there are mandates for every little checkbox nurses must complete. Plus, the US is very litigious and our doctors and the organizations where they practice are afraid of lawsuits so they practice defensive medicine, ordering too many tests. They are afraid to go outside a guideline just in case.
  12. Although many people in the US believe most hospitals and outpatient clinics are non-profit, this is largely a myth. Only a very few are truly nonprofit.
    These organizations are competing against one another so they spend TONS of money on wasteful programs to attract new patients, and they promote profit-making programs to help pay for the waste. Chronic pain that can't be fixed with surgery, is not glamorous or profitable so it is not an area they are interested in. Sports medicine, short-term symptom care for injuries, and invasive procedures that generate revenue are much more prevalent.
  13. I am not eligible for a steroid injection because they need an MRI for accurate placement. I can't have MRIs because I have an implanted spinal stimulator (for the leg pain/lower spine problems).
    I would need a myelogram of my cervical spine before they can be certain I even have something that can be treated with a steroid injection. And in the unlikely event that I do, they would then also need it to know where to inject. This requires a cervical spine puncture to inject dye that is not without risk. I don't know if I want that. I have time to decide because I have to have the EMG before I even schedule the CT with myelogram. It seems risky for something that probably won't help.
  14. I was so hopeful because this time, with an early correct diagnosis, I hoped for a better outcome.
  15. Here is the treatment they offered me to improve my comfort in the upcoming months: NOTHING.
  16. I am supposed to just live with this.
  17. The new spine doctor looked me in the eye and said, "You're stuck. There is nothing else we can offer you."
  18. Just to make sure he was really not going to do anything for me, and I was being sent out to continue to suffer excruciating pain for a minimum of two more months, probably much longer, and possibly even forever, I asked one last time, "So there are no medications, no treatments, or anything else that you can do to relieve the excruciating pain?!?"
  19. And he said, "No. There is nothing else."
    He obviously felt badly about it. He said current guidelines prohibit more painkillers, and he wished he had a different answer. He suggested that some people find relief in a heated pool, and I explained that we've already installed a walk-in neck-deep therapy tub at home that I used now, and we also have an outdoor hot tub on the back porch.
  20. So that's it for the cervical spine. I have at least one more test, I may consider a second, but in the meantime, and likely forever my continued mantra is supposed to be, "Keep suffering and carry on."
  21. I am shell shocked. I truly expected to have some options. I thought because they made the diagnosis early, before permanent damage like I had in my legs, I would be offered something. I also didn't expect them to just leave me suffering. But they did.
  22. Static