I had my second styloidectomy and decompression of my jugular vein 3 weeks ago. It took a couple weeks for the swelling to go down, but as of about 5 days ago, I haven’t experienced any head pressure, heart rate spikes, or light headedness and have only had very mild headaches. I’m now able to move, bend over, hike, lift things, lay down, use my muscles and let my heart rate rise without triggering severe head pressure!!! I’m so happy I could cry. It finally feels like I’m going to be able to get back to living life for real. I still get exhausted easily and having not done any exercise for over 2 years now, it’s going to take time to get back in shape, but it’s seeming like that’s a real possibility for the first time in many years!!
For background, I was diagnosed with hEDS, bilateral Eagles Syndrome with jugular compression, May Thurners Syndrome, mild Nutcracker Syndrome, CCI, POTS, MCAS and suspected Occult Tethered Cord.
I had my first styloidectomy 12/22 with some improvement to nerve pain but not to other symptoms. I was started on Eliquis at the same time.
I started experiencing severe pelvic pain, leg swelling and terrible menstrual cycles post styloidectomy.
I had a stent placed in my left iliac vein 10/23 with dramatic improvement to leg swelling and pelvic pain. Mild improvement to POTS symptoms.
Found out that blood thinners can exacerbate MCAS so Dr took me off them after the latest styloidectomy. I’m still taking Cromolyn Sodium for MCAS, but plan to try going off that when I run out of this batch.
I still have some neck and head pain, but it feels very different. This is more light pings of pain that seem to have to do with head & eye position, so I’m thinking that is CCI related. And honestly, compared to the pain I’m used to, these sensations are barely worth mentioning. I’m still doing PT weekly for that and hoping it will make a difference.
I do still have strange electrical sensations up my spine when moving after being still for awhile, so OTC may still be an issue, but again compared to what I’m used to dealing with, it’s really not an issue, at least not for now.
I hope some of you have similarly positive results to share soon! It’s been over 5 years that I’ve been actively trying to resolve my chronic issues, with pain starting over 15 years ago. So grateful to Dr. Hepworth for taking me seriously, and for being willing to perform surgery despite skepticism from his peers.
Fingers crossed that these improvements hold!
