Hi everyone, I am one day post-op from my right styloidectomy and IJV decompression surgery with Hepworth. I thought I would fill you all in on how it went and how I am feeling, as well as some key takeaways from this whole experience:
hyper mobile Ehlers Danlos Syndrome
Eagles Syndrome (what the surgery was aiming to treat
PFO (hole in my heart between my left and right ventricle
He also saw evidence of past Lyme disease.
Now for what happened, what he saw, and what’s next:
We expected my right styloid to be elongated based on MRI’s, CT scans, Jugular vein ultra sound, etc. When he got in there, however, he saw that my styloid process was not only incredible long, it was also really freakin thick, and here’s the kicker, CURVED.
So my styloid process was not only impinging my vagus nerve and jugular vein, it was also compressing my ninth and tenth cranial nerves, which affect a sh*t ton of autonomic things we don’t even think about , including heart rate and the like, nausea + and so much more. We are really hoping that some of my symptoms are attributed to this and once fully healed, my POTS symptoms and migraine symptoms will lessen.
Unfortunately we can’t expect a miracle here as Ehlers Danlos syndrome is incurable and walks hand in hand with POTS and migraines, so I anticipate being left with some of those symptoms, just crossing my fingers and toes that it will be less intense and more manageable/receptive to future treatments.
He had to remove the curled styloid - something in all his years of doing this he’s never seen before. He then had to (literally) detangle my jugular vein, vagus nerve and ninth and tenth cranial nerves. Not sure if they had to balloon any of those veins in order to open them and resume blood flow, but I’ll find out during my first post-op when I get my stitches removed.
He also said that he saw clusters of lymph nodes suggesting former Lyme disease. In addition to having that checked out, an appt in a YEAR with the denver center for Ehlers Danlos syndrome, he also wants me to get my PFO reevaluated.
Some key takeaways from my experience in whole:
Go into this with an open mind and ignore, as best you can, any voice (yours or someone else’s) telling you it isn’t a good idea. For example, my neurologist insisted that some chiropractic treatments would fix me up (he got some $ from the chiro he tried to send me to and it was more than evident that is where that came from). Other docs told me not to remove anything I didn’t need to (meaning the styloid process). They were all doctors who weren’t helping me at all, nor were they really even trying to help.
Don’t let anyone gaslight you. Easier said than done, trust me - no one gets it like I do. The more abstract the diagnosis, and the more invisible your symptoms are, the less people want to believe or help you.
And if you mean to say, “don’t let anyone gaslight you,” for the love of all that is pure and holy: say that. Never, ever tell someone to “gird their loins.” Especially not to a Jewish girl…it does far more harm than good, ffs.
I am proud of each of you who is stuck in this wretched illness and medical journey. We are freakin’ warriors. This shit is not for the faint of heart, and I know none of us ever asked for it, but are still walking through fire with grace - even if it doesn’t feel so graceful at the time.
B’ahavah (with love),
Small girl big mountains