Hi Everyone! I know it’s been awhile, but I remember pre-op reading EVERY story and being frustrated when the stories here ended very abruptly. So here’s my good/bad/very hopeful update.
First the good. You can’t tell I had surgery at all by looking at the scar. There are no bad side effects from the surgery. Best of all, my scariest complaint, the transient ischemic attacks where I felt ‘flat’, could not speak well, had no balance—are GONE. I would 100% do the surgery again knowing this would be the outcome.
Second–the other things are all back, maybe even worse—the blue hand, the blurred vision, the right lower quadrant pain. In the past I had a series of stellate ganglion blocks, they would provide complete relief but only last 2 hours or so.
Probably the most major ‘rabbit trail’ we ran down before finding the elongated styloid was my diagnosis for Thoracic Outlet Syndrome. It explained everything and the clinical tests they can do–strange specific arm and hand weaknesses, a pulse that disappears with certain movements, nerve conduction studies, sudomotor changes–I got 'em all. We fought the fight and got out of group to see the main TOS guy over at UCSD. After some very specific imaging studies at their TOS clinic, they found no rib or outlet abnormalities. They confirmed the diagnosis but said surgery wouldn’t help since my ribcage was normal. That confirmed what the radiologists at Sharp, Scripps and Mayo Clinic had said.
Here’s where this becomes a message of persistence, educating ourselves, and learning everything we can. We found the elongated styloid ourselves. Let’s take a look at the ribs.
While doing that, we sent a message to the functional neurologist and directly asked—“Do I have cervical ribs?”
At the next visit he said no, I reviewed your imaging with a very thorough radiologist. You don’t have cervical ribs. So we spent the majority of the visit showing him these images we printed up—
(Just a few. We actually scrolled through many images with him) The thing that was confusing was, cervical ribs by definition come off a cervical vertebrae. These shortened, floating ribs clearly came off T1 like first ribs should. The ribs below are broad, flat, and attach at the manubrium (top of the sternum) like first ribs should. When a doctor you consider brilliant says…“That’s weird”, you know you’re on to something.
Well, I do not have cervical ribs. The doctor sent our questions and observations back to the very thorough radiologist. I have rudimentary, or hypoplastic, first ribs that never fully developed and the second ribs developed like first ribs. The head of the first rib appears to be crushing the stellate ganglion, which could explain every one of my complaints.
The distinction between anomalous first ribs and cervical ribs is important. When you have cervical ribs, most of the time they cause no problems. Anomalous first ribs are an entire vertebrae lower and predispose one to TOS. More important, if you remove cervical ribs for TOS you also remove the first rib. If you mistake a short first rib for a cervical rib and take out the second rib you thought was the first rib, it can be very detrimental.
So…why were these anomalous first ribs missed for so long? I think it has to do with how radiologists count ribs, and the curveball I threw them. As luck would have it, I DO have an extra set of ribs, down at the bottom off a lumbar vertebrae, L5. So a radiologist looking at imaging from the front would count a normal number of ribs, 12 pairs, starting with what looks like normal first ribs at the manubrium. Then a look at the cervical spine (neck bones) shows a set of ribs coming from the first thoracic vertebrae, T1, with none from the neck bones. So, normal from the front, normal from the back. It isn’t until you scroll through you realize the bones that come from T1 end abruptly and aren’t the same ones that attach at the sternum. (this picture is mislabeled as cervical ribs and the second ribs are mislabeled as first ribs–we were still figuring it out))
So this rib needs to come out. Hopefully just the one on the right. Anomalous ribs do not cause TOS; they predispose you to TOS after a fall or accident. My history exactly.
If they had seen these years ago and done the surgery, it might have taken care of most of my complaints–but my elongated styloid still would have been causing daily TIA’s and I would have assumed the surgery was just a partial success. They missed it and we found something else needing attention. Even if we knew all this, I’m glad the styloidectomy is behind me. Now hopeful about the rib removal and an end to doctor visits.