@Carlak - I’m glad your surgery is coming up soon. I have a concern based on your statement that you’re driving back home after surgery as it sounds like you’re doing this solo. Is someone coming with you to drive you home afterward? I ask this because you will not be able to do a longish road trip on your own for several weeks after surgery as your neck will be stiff & sore & you may be on medications that prevent you from driving. If someone else is doing the driving then it will be ok.
Since this is the case, it’s important for you to let Dr. Hackman & the anesthesiologist know you’ve got EDS & had problems both during & after surgery so (s)he can help prevent those from happening this time. It’s been documented that people with EDS need extra anesthesia to help them stay asleep through procedures as their bodies metabolize anesthesia faster than normal.
There are a number of different types of Rx pain medications. If you know of particular meds that have caused bad side effects, you can request not to have those Rxed. If you can tolerate it, you should request a course of post op prednisone. Dr. Hackman doesn’t typically offer this but many of our members who’ve seen him for surgery have chosen to request it a day or two post op due to pain & swelling. If you get it pre-surgery, you’ll be ahead of the game.
Swollen glands are not uncommon w/ ES. We don’t know exactly why but it seems those can be part of the immune system’s reaction to the nerve & vascular issues that ES can cause. Those may go away after your ES surgery if ES is the cause. Your TMJ symptoms may also decrease. Mine did.
This may be due to your vagus nerve being irritated by your elongated styloids so it may go away as your vagus nerve heals once the styloids are removed.You can request an Rx for an anti-emetic for post op use, too.
We have a number of members with hEDS so we also believe ES can be a “side effect” of that because the ligament laxity caused by hEDS sends a message to the brain that the neck is unstable & needs reinforcement to help stabilize it. The reinforcement comes in the form of stylohyoid ligament calcification &/or styloid elongation which in turn causes its own set of problems.
The good news is that having your styloids out will most likely reduce some of your symptoms & eliminate others. You do need to realize that this is not a quick surgery to recover from, & it may take 2-4 months before you start really noticing the positive changes & up to 12 months for the affected nerves to fully recover. DO NOT be discouraged if you don’t notice symptoms improvement soon after surgery. Also symptoms can come & go during the months of recovery. This is typical of nerve & vascular healing.
Take a wedge pillow with you so you can sleep with your head elevated for a week or more after surgery. Based on doctor recommendation, head elevation of ~30º is best.You’ll also need at least 4 gel ice packs for icing your neck in the first week or two post op. You do this 20 min on & 40 min off w/ a thin towel or cloth between the ice & your skin.
There is good information about what to expect after surgery in this post: ES Information- Treatment: Surgery - Scroll down to Recovery from surgery & read the information there.
I hope all this info is helpful & answers your questions but please feel free to keep asking if other things come up.
I’ve added your surgery date to my calendar & will be praying for you that day in particular. I wish you safe travels as that’s quite a road trip you’re taking.
