I’m seeing another new spine specialist tomorrow. He’ll be #3, and this time, things will be different. #1 was actually a neurosurgeon, and I saw him after finding the syrinx. Because there was no apparent Chiari malformation in my scans then, he dismissed me. Another bloated, arrogant, burnout who belongs in a career that keeps him from talking to people. #2 was actually just a spine specialist, and he’s the douche who actually said to me, “Sounds like you want something to be wrong” and refused to examine me, hear anything I had to say, or order any tests. He made it very clear in the two whole minutes I saw him that I was wasting his very valuable time. It was right after that appointment that I wound up with a referral to the Physiatrist who diagnosed the EDS, though, and that’s where all my research started.
This time, I have research to offer him.
This time, I have rebuttals.
This time, I have proof that it’s not all in my head.
This time, I’m seeing someone who’s actually been recommended by others with EDS.
This time, I’m seeing a doctor I asked to be referred to.
This time, he’s a guy with a nice enough demeanor that the scheduler was delighted to hear his name when I called and took it upon herself to describe his kindness.
This time, he’ll listen, he’ll take me seriously, he’ll know what he’s doing, he’ll know about EDS and Chiari and CCI.
This time, he’ll believe me when I tell him my spine is entirely unstable and has caused partial and sporadic paralysis.
This time, he’ll be helpful.
I’m slightly terrified, both for the chance that this will be another bad experience and for the possibility that this is my jumping off point – that this is where the real healing truly starts with a trepidatious first step toward a very dangerous surgery.
We don’t have a working printer, and my Google Drive and FedEx Office Print Online apps aren’t cooperating, so I won’t have hard copies to take like I’d wanted. I did, however, amass everything I’ve collected or posted so far into a folder on the drive that I’ll offer him during my appointment. If I can find my damn flash drive, I’ll save everything to that and take it, too. I’m hoping that since he was recommended by one of my support groups he’ll be already well-versed in all applicable research.
It’ll be a two-and-a-half-hour drive for us tomorrow, starting at 8:00 a.m. Just getting up early, getting ready, and riding in the car that long will take most of my spoons; then there’s wait time, time with the doctor, and the drive back home. I’m fully expecting to be in excruciating pain before my appointment even starts. Hopefully, my brain won’t be malfunctioning too much to express myself clearly.
This time, it’ll be worth it. This time, I’ll leave with tears of joy instead of despair and heartbreak.
Please fuel this positive expectation energy with me. It needs more fuel than I can give it if I want to ensure its manifestation.