Katherine Taylor Jenkins NeuroSpine Happy Patient after surgery for Craniocervical Instability

Katherine Taylor, She presented initially, from Virginia, referred from the Bertolotti's Facebook Group, to discuss her neck pain and other cranial/sympathetic dysfunction symptoms. She had neck and low back pain for over 25 years, but also had a chronic ache in her chest, sharp burning sensation under right ribs. She experiences neck pain and vertigo and dizziness all the time, since her 20's, triggered by sudden movements. She also experiences flare ups of brain fog and headaches. She has pulsatile tinnitus, and tachycardia, and hypertension. She has relief of symptoms with a soft collar, and she sleeps in the collar. She has had a long history of migraines, since 18, but began to evolve in the past few years to include vision disturbances/vision loss. She has gone to the ER multiple times with stroke symptoms, including vision loss and aphasia, but these would resolve eventually. This past summer, all of her symptoms got much worse. In one instance, she was at the beach all day for a friends birthday and found herself turning her head often to talk to friends and not paying attention to her head position. The next day she had horrible headaches, brain fog, and even trouble breathing, and was confused for 2 days. Pain meds were ineffective, similarly nerve block injections didn't provide much relief. Physiotherapy typically made her worse, so she has stopped going. She needs medications to help sleep. Previously, she had her gallblader removed (without improvement) and subsequently was diagnosed with a hiatal hernia, and was left with acid reflux after treatment. Many doctors told her that her symptoms were stemming from menopause or due to her fibromyalgia. She has been diagnosed with Ehlers-Danlos Syndrome hyper-mobility (EDS-h), which has led to multiple orthopedic injuries, with recent shoulder surgery. Overall, she is frustrated with the lack of knowledge by her treating doctors with hypermobility-related issues. We started her on a 2 week collar trial followed by a Stellate Ganglion block to see how much impact this would have on her dysautonomia symptoms. We examined her for other peripheral nerve entrapments, spinal conditions, vascular or other neurological or cardiovascular problems, we identified her as having craniocervical instability causing her dysautonomia symptoms and neck pain, as she had done very well with the hard collar trial (refusing to take it off again until we “fixed” her), as well as the stellate ganglion block trial (which nearly completely resolved the symptoms, but they returned after a few days). We felt this indicated she would do well with surgical treatment of the instability. The collar has allowed her to exercise again, using a Pilates reformer. Her symptoms are worse the day after if she takes off the collar. With both the injection and the collar, her ears have cleared up, her brain fog has improved, her pulsatile tinnitus has improved, and her vertigo completely resolved (temporarily) with treatment. She notes even some of her foot numbness was resolved from the injection. She still experiences increased heart rate when walking up stairs, going from 70 to 140 on occasion. She underwent an uncomplicated instrumented Occiput-C1-C2 fusion using “off-label” use of Infuse rhBMP-2 product (Medtronic, Memphis TN), and imaging showed a solid fusion. At 2 months her neck pain was in the 2-3 range, but still had 7/10 low back pain. She reports relief of almost all pre-op autonomic symptoms including her vertigo, dizziness, GI symptoms, headaches, and POTS. She still struggles with some brain fog but believes it is improving. She is beginning to ease out of the collar. The patient reports that she is doing “great”. Her tachycardia has improved and has a resting heart rate of about 60. She no longer as bloated as she was pre-op. She has had improved GI symptoms with less diarrhea. She still has some POTS like symptoms and pulsatile tinnitus with some left ear pain, but these symptoms are still improving compared to pre-op. She has increased her activity to 2 miles every other day, and walks a lot in her home (3 floors). She is currently taking much less medicine than before surgery, having recently discontinued several medications, as she no longer needs the medications to control most of her pre-operative symptoms. She has also reduced her dosage of constipation medication. She has followed up with her ENT and her vision was fine. 1 year after fusion she still had 2-3 neck pain, but still had her 7 low back pain. Her dysautonomia symptoms post-surgery have continued to improve. She is quite happy with her currently state with reference to her CCI, with significant improvements in all aspects of her CCI symptoms, but has a persistent whooshing sound in her ears.