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vascular compressions: a day in the life

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 A month or so ago, Theodore was hanging out with me in the living room. And out of nowhere he asked why I had to have this rare health issue. Wanted to know how I got it and how common it is. I explained that I was just born this way. Then we searched to see what the internet said for how common it is. It said about 2 out of 100,000 people. This is referring to median arcuate ligament syndrome, which is when there is compression of the celiac artery and you have symptoms because of it. They think anywhere from 10-25% of people have the compression without symptoms. After I told him about the 2 out of 100,000 he immediately said, “So you could be the ONLY person in Mankato who has this!?” I had never thought about it that way, but he’s right, I could be. Though as we’ve witnessed with my journey, it’s ridiculously challenging to rule out all the things and get a diagnosis. So how many people struggle with MALS and have no idea?! Theodore was just so sincere in all his questions. He t
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vascular compressions: plot twist

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A few weeks ago I started writing a blog about this whole waiting game. It didn't get completed due to dealing with life, not feeling well, and time. Time is actually more a translation of energy for me in most cases. I might have an hour to spare, but I'm too exhausted or in pain to put my thoughts on a page. So then I thought, okay, I'll write a post when I get to announce my surgery date! I gave the go ahead to schedule surgery April 24, 2024. After five weeks they finally gave me a requested date. Which just means they have a date that works for the doctor and they send it to the hospital. The hospital then takes care of the insurance piece and getting prior authorization. But they don't submit for authorization until close to your surgery date because the authorization expires. This is what they told me. I've done a triangle of calling to the hospital, clinic, and insurance these past two months trying to understand this process. Each time I'd call I'd
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vascular compressions: one step closer to surgery

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Monday, April 22, 2024, I had my call with Dr. Warren. We have long anticipated this call to pull together all the work I've done over the last months. My first appointment with her was December 19, 2023. In the world of rare, 5 months isn't so bad I suppose. But it's felt like a long time for me. But that's also because I've been working on figuring out my health for several years. We started off the call with her asking about my venogram and how I'm feeling post-embolization. I explained the type of pain I've been experiencing. She asked if I had seen the x-rays from the venogram and I had not. The doctor had just told me that he didn't see any compression with my renal vein or iliac vein. Below are pieces of what Dr. Warren said to me during the call if you'd like to read more in depth. I'll try my best to summarize very briefly here and you can continue reading if you wish :) She is concerned about compression of my left renal vein, despite
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WHEN THINGS FALL APART: PART 2

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CLEAN MARGINS & CLEAR PERSPECTIVES Surgery was a month ago, and I couldn’t imagine things going much better.  As expected, the first week was the roughest.  Ashlee & I were grateful my parents stayed a couple days post surgery, then Miki took Otis for a few days so I didn’t have to worry about lifting him.  The swelling & pain never got too bad and I was able to manage with ibuprofen and an antibiotic to prevent infection.  It drained serosanguinous fluid from day 7-28 or so, but that’s to be expected.  We’ve now had 3 follow ups with the surgeon and the nearly 8 inch scar on my back is healing well, but very numb.  The cut under my left armpit is looking great, but both are tight. Ready for surgery! One month scar progress! There were a couple spots on my lymph node that the pathologist wanted an expert to look at, which took an extra couple of weeks.  But we got the report, and both the margins around the mole and the sentinel lymph node came back negative, which was the
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vascular compressions: post-embolization life

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What day is it? I've been a bit MIA lately, so my blog is a tad behind. I'm going to try and incorporate some dates so we can all follow along better... myself included! Venogram/Ovarian Vein Embolization 4/5/2024 (a Friday!): We left off here. I wrote two whole blog posts about it. I'm a bit long-winded. We can't miss a detail though ;) Part 1 Part 2 X-ray of dye in my right ovarian vein X-ray of dye in my left ovarian vein X-ray of ovarian coils that were placed Post-Embolization 4/6-4/7 (the weekend): My main thought was, 'oh my word I'm in so much pain'. I think it hit me harder because I just had not anticipated the procedure and was still trying to wrap my head around it. What it meant going forward. How long would the pain last. Would I feel better than before. What will Dr. Warren think. Things like that. There was absolutely nothing I could do though, so I tried to stay in the moment and not dwell on it. I did find some FB groups on pelvic congestio
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