Health Update 1/1/2020

• In this post I shared another setback and in this post explain what vascular compressions are if you haven't read my most recent posts.
• There are only 2 vascular surgeons in the country that I know my Dallas cardiologist recommends, but I wasn't able to get a referral (which I need for the one in Tennessee) because my CT Angiogram didn't show enough compression for a MALS diagnosis or SMAS diagnosis (although I've had doppler ultrasounds that do with abnormal velocities which helped me continue fighting for a Nutcracker diagnosis even when the Venogram was incorrect). Both surgeons have a pretty good reputation for MALS, but I was hoping for a surgeon who could fix all my compressions in one surgery.
• I am currently attempting to seek out the California surgeon to see what his process is, but know if he does agree to look into my case, I have to make a trip even there for the 1st consult. The secretary was out Tuesday so will try back tomorrow. Anyone want to accompany me to Santa Monica Blvd? 😉
• If I do finally get an official diagnosis of MALS & SMAS (I've been told the Ohio surgeon is still supposed to look over my scans and call me 🤞) and therefore would hopefully mean a referral to the Tennessee doctor, but the consult appointment wait time is 4 months out right now. 
• Another obstacle now in the mix because the Ohio surgeon did not require, is that I will have to get a Celiac Plexus Block done before they agree to surgery. Unfortunately it is a greater risk for someone with EDS because the block can cause more scar tissue to form in the already problematic area.
• I finally received my thorough and validating report from my geneticist to all my doctors showing with research that I have severe Ehlers-Danlos Syndrome. We are waiting for further genetic testing to see if I have any other vascular genetic mutations or connective tissue components that would help to further explain my health problems. 
• Next week I also have my first appointment with another EDS specialist in Houston, but she is not covered by insurance. We are hoping she is worth the $400 appointment to get some more answers and direction on my organ function and to maybe try some out of the box treatment/medicines to give me pain relief.
• I am half way through my EDS Hypermobility research study. I was shocked how much I have learned about my body and movements even with having a background in exercise science and personal trainer certifications. I would now recommend everyone not just if you have EDS to sign up and take her course ->  https://jeanniedibon.com/strengthen-your-hypermobile-core/