Hi Rather_b_hiking!
Welcome & thank you for your detailed story. What a horrendous journey you’ve been on, but you have a confirmed diagnosis now. Seeing Dr. Krempl in Dec. is an excellent next step, but I’m not sure he does ES surgery based on what our member @Hadassa posted in 2018. However, things could have changed since then. New Eagles Diagnosis in Detroit - #7 by Hadassa
Since you have serious vascular symptoms, the doctor you should see for surgery is Dr. Hepworth in Denver, CO. He is the VES specialist on our doctors list. The wait time to see him is long, but his front ofc staff does keep a cancellation list, & several of our members have had their surgeries bumped to significantly closer dates than originally scheduled. That is to say, if you decide you want to see him, make an appt. ASAP.
I have to say that your fitness level is likely what’s kept you so strong through all of this. I was a long distance runner when my ES was diagnosed, & I believe that was helpful in getting me through my ES surgeries.
It’s also interesting to note that we have another member who made the same comment about needing to hold her head in neutral to avoid debilitating symptoms. The head position that causes jugular compression can vary significantly from one person to another so having two of you note the same thing on the same day is such a coincident.
BTW - I had a cycling accident between my ES surgeries w/ a head injury. It left me w/ Meniere’s Disease/hearing loss in my left ear. I can sympathize w/ the damage yours did to you. That doggone pavement needs to be more forgiving!!
Please know that we’re here for you & totally understand how diverse & destructive ES symptoms can be. You’ll get compassion & support from our members, I promise. 