I’m scheduled for a bilateral jugular decompression w/styloidectomy & resection of the transverse process of C1 in a few days. I’ll be having surgery with Drs. Peter Costantino and Michael Tobias. I will be their first bilateral procedure. I’m pretty anxious and feel like I have been so busy tracking down the answers and coordinating this trip that I haven’t had time to do any real preparation for my recovery.
I know there are lots of posts on here that talk about recovery, but I’m struggling to navigate this forum with my cognitive issues. I’d love any input from anyone who’s had this procedure, but especially:
bilaterally; or
with Dr. Costantino; or
who has Ehlers-Danlos Syndrome; or
has MCAS; or
who has a high risk for bleeding complications.
For those wondering why the bilateral procedure - I have hypermobile Ehlers-Danlos Syndrome, along with MCAS, Craniocervical and Atlantoaxial Instability, Von Willebrand’s Disease, Bilateral Thoracic Outlet Syndrome, Bilateral Chronic Venous Insufficiency, and several dysautonomia diagnoses. In addition to my elongated styloids causing IJV compression, I also have congenitally small (hypoplastic) left internal jugular vein, left transverse sinus and sigmoid sinus. Due to my complex anatomy, bleeding risks and long list of allergies, including adhesives and metals, they’ve decided it was best to do both sides at once rather than make me undergo two procedures.
The most significant symptoms I’m hoping to find relief for are cognitive impairment, syncope, neck discomfort and dysautonomia.
Oh my, you have so much going on! I can understand why bilateral surgery seems a better option… Dr Hackman in NC has done quite a few surgeries bilaterally, but not many doctors do this- the most significant issue with this surgery is swelling, I don’t think that he routinely prescribes steroids but other doctors do routinely, so that is something you could ask about if it’s a medication which you can tolerate. We recommend icing regularly after surgery anyway, maybe 15 minutes on and then a break, wrapped in a towel. And keeping propped up even when sleeping is recommended after surgery, so we do suggest getting a wedge pillow to help with that.
You may well find that chewing or opening your mouth wide is difficult after surgery, so we suggest getting smoothie ingredients or soft foods ready. Painkillers can make you constipated, so a good idea to have a remedy for that handy…
They’re general tips for any ES surgery, hopefully others will be able to chip in with their suggestions for your specific questions.
You could discuss intubation with DrC; some members with EDS have found that the procedure has triggered jaw issues, TMJD. And presumably any drugs used in the anesthetic have been discussed with you?
For general suggestions: Surgery shopping list - General - Living with Eagle
And here’s the link to the surgery info, again general info, not specific to your conditions: ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Surgery is very much up & down, that seems to be the norm for most of us, so expect that. Swelling peaks days 3-5 usually, so they’re often the worst…
I have had a search through the forum (you can search for anything using the magnifying glass icon) for more mentions about surgery recovery with EDS etc but can find very little specific , helpful info…There are some links in this discussion which might help a little: Update/questions regarding appt with Dr. Hepworth last week - General - Living with Eagle
I hope that your surgery goes well, will pray that it’s successful, let us know how you get on
