vascular compression recap: 2023-2024

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oh hey friends!

Let's do a little recap to summarize happenings, as it's a lot to follow.

August 2023: started experiencing intense pain after eating and drinking that would have me curled up in a ball for hours at a time - ran numerous tests and came up with nothing. More in-depth timeline.

September 2023: my EDS doc suggested looking into MALS & Nutcracker Syndrome - I had Mayo vascular review my CT scan to get an opinion if there were compressions - the radiology report had only noted mild pelvic congestion - Mayo sent a letter stating they could not take me on as a patient at this time - I called and asked why - they said they didn't see any compressions on my scan

I put on my research hat and started reading. I was able to get my body calmed down to a tolerable level and just pushed through. Always in pain, but I wasn't crying in a ball anymore at least. I found ways to eat minimally and get by. I also didn't believe Mayo, something wasn't right and my symptoms aligned with these vascular compressions I was reading about.

Oct-Dec 2023: through a facebook group for MALS I found two different doctors to consult with - one in Connecticut and one in Oklahoma. Dr. Hsu in CT reviewed my scan and said I did have MALS anatomy - next step was to do a celiac plexus nerve block to see if I actually had the syndrome and it was causing my issues - found a radiologist in MN to do it, but couldn't schedule a call until December. Meanwhile, I was curious if I had other compressions or if I should just focus on MALS diagnosis. Dr Hsu only treats MALS. So I sought out Dr Warren in Oklahoma based on a recommendation from a patient in the group - she has treated multiple compressions - drove down to see her in December (she didn't do virtual for consults). Dr. Warren saw lots of issues with my vascular anatomy, but needed more testing to be done to get a full picture.

November 2023, I did an MRI to check my pituitary gland due to high prolactin levels and they found a small nodule. In December 2023, I had two dental cavitation surgeries. Cavitation Story, Post-Surgery 1, Post-Surgery 2

Jan-March 2024: did all the tests... blood labs, celiac plexus block, ct enterography, angiogram, and mesenteric ultrasound (if you go to the side menu and click 'Archive' you can access posts by month - there are quite a few end of March-April)

April 2024: had a venogram done and the doctor coiled & embolized me for pelvic congestion syndrome; Ben had surgery to remove the margins of his melanoma. There are a few blog posts about the PCS debacle: PCS Post 1, PCS Post 2, Post-Embolization/Ben's Surgery

Did a call with the Oklahoma surgeon to make a plan for surgery. Officially diagnosed with MALS!)

June 2024: I had a tentative surgery date of July 10, 2024. June 24, 2024, I got an email that in summary said she will not be doing my surgery and I needed to find a new doctor. Plot Twist Blog Post

July-September 2024: Called numerous places to schedule consults to meet with surgeons... I think my list totaled 7. I met with three different surgeons, went with the third one, and cancelled the rest of the consults. This was an incredibly exhausting period of time. The amount of admin work I had to do with all my records and coordinating visits was unreal. And I was STRUGGLING. Unfortunately I didn't have the energy to blog during this time period, but tried my best to capture some updates on our Give in Kind page.

In August I also added a trip to Wisconsin to meet with a transplant surgeon to be evaluated for Nutcracker Syndrome and May-Thurner Syndrome. They performed a new venogram using IVUS (intravascular ultrasound) that allows them to better measure compression and gradient pressure of blood moving through veins. Nutcracker was indeterminate (come back for another test post-MALS surgery if still having issues) and May-Thurner was diagnosed - left iliac vein 83% compressed.

October 2, 2024: Had my surgery with Dr. Omlie at M Health Fairview in Edina, MN

December 5, 2024: Had a stent placed in my left iliac vein for May-Thurner Syndrome


And here we are to the present...




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