Anxiously making this post. I officially got my diagnoses back in March. Scheduled my styloidectomy for Aug 30. The following are the determined diagnoses:
Eagle’s Syndrome, Jugular Vein and Vagus Nerve Compression. One of the highest pressure flows Hepworth had ever seen (his own words) so finally some validation and ANSWERS! Halle-freakin-luyah,
Ehlers Danlos Syndrome - another one that answered SO many questions. But also leaves me with so many more questions.
POTS
Migraines
PFO (does not require surgery, thank god)
I have my pre-op with the Vascular Institute of the Rockies today and I am wondering, what were some of the questions y’all asked in that appointment? I have honestly been overwhelmed with information and it has raised so many questions, mostly beginning with ‘what the f…?”
SO I am hoping you guys can help guide me here. What were some of the questions you asked in this appt, or the pre-op with Hep (Aug 3, the day before I turn 25🫠).
I also have questions on Ehlers Danlos Syndrome, but I will likely make a separate post for that.
So pleased that you have a date for surgery! Will be praying that it all goes well!
There’s info about surgery in the Newbies Guide Section, & there’s a list of questions we suggest members ask doctors before surgery in there, here’s a link: ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
But to be honest, that’s more if members are seeing doctors that we don’t know much about, to see how experienced they are with ES, so not so useful for you, as we know you’re in good hands with Dr Hepworth.
It’s worth reading through posts of those who’ve had surgery with him, to see what the recovery is like. You could ask if he’ll balloon the IJV to re-open it, and how long he thinks it’ll be before the Vagus nerve settles (that can take a while so don’t expect instant improvements). It would be interesting to know if he thinks the POTS is linked to the Vagus nerve compression?
Are you on anti-coagulants at the moment? If so, make sure you ask about when to stop that before surgery, and what medication you’ll be given afterwards.
I would ask to about the EDS, what experience he has with EDS patients, and how careful they’ll be with your neck and jaw during surgery.
Best wishes!
@smallgirlbigmoutains - I’m glad you came back to let us know about your surgery date & to ask questions. I’m also glad you’ve gained a lot of knowledge about your health issues since March. I’m sorry to learn you have EDS but am glad you can get some great info re: EDS from our forum.
We have a group of people on this forum w/ very diverse diagnoses & information to share. As Jules mentioned @Snapple is a fountain of information regarding EDS. I see she’s replied to you on another thread. You can’t go wrong relying on what she has to say.
I’m a bit late in responding to your question about what to ask at your appt. today (maybe yesterday by the time you read this). I’m not sure anyone has asked about a question protocol for a pre-op appt w/ a vascular surgeon. I expect that your concerns were addressed though.
I met Dr. Hepworth in May & know he’s very thorough in answering questions & addressing concerns regarding ES surgery at the pre-op appt. I suggest you make a list of things you feel uncertain about & any questions you have about how the surgery is done & what can be affected, what is done if the IJV doesn’t respond to being decompressed, etc. (we know that the vascular surgeon in attendance is prepared to balloon the IJV if it doesn’t open, but I’m not sure what happens if even that doesn’t help). In most cases blood flow increases through the IJV shortly after it’s decompressed.
I assume you’ll have an overnight stay post op. The hospital in Denver is totally AWESOME & the nurses are amazing! You’ll get great care there.
