Hey, y’all. Excellent news.
Dr. Ellison at Duke has taken my case and based on severity of symptoms, complications due to vEDS and the sheer length of my ES he wants me in for surgery no more than four weeks from today. He is going to get my most recent CTA (for some reason he only had one from last July, which is so random since I’ve had at least half a dozen since then for various reasons) and we are meeting virtually again (like today) next Monday. Monday, we will discuss his surgical plan and schedule surgery for ASAP. He said that if I am comfortable with it, rather than having someone drive me 3 hours to Duke for that appointment, he’ll meet with me virtually to come up with a plan and then I will go see him and anesthesia the day prior to surgery in RDU at Duke. I am so grateful for that!
I also had a STAT order placed by my PCP to general surgery for a PICC line today because I am still waiting on the GJ feeding tube that I was told I needed before this ES diagnosis took over everything (I have severe gastroparesis). I need hydration and nutrition desperately, especially if I am going to be strong for surgery. So, a temporary PICC, fluids and TPN are the direction we are going. I am nervous about IV nutrition specifically, but it’ll be worth it until I get a feeding tube as a more permanent solution.
Dr. Ellison is confident he can help me. He said he thinks my pain will improve quickly but also warned that it’s very possible my nerve damage (including vagus nerve) is permanent, so that specific neuropathic pain, trigeminal myalgia, scalp pain, SVT episodes and GI issues might not get better any time soon. I can live with that as long as the swelling, jaw pain and such, and imminent risk of dissection via boney spike in my neck is mitigated. Lmao.
We meet again next Monday and I will update then! I will be heading to RDU a day prior to surgery to stay with my brothers in the area, then staying with them for several nights after surgery as well. Then my mom will drive in from out of state to stay with me for a week or so once I am back home. During my “trip” my friends will take care of my pets. Hopefully this will take place over a week my partner happens to be traveling home from work. Fingers crossed it all goes as well as Dr. Ellison made me feel it will!
