Part 4: MALS surgery is complete! That’s two stage 4 endo excisions this year, 1 hour long celiac plexus nerve block that I was kept awake/no anesthesia for because the evaluation window was only 3 hours & a very risky MALS surgery as my partridge in a pear tree.
Started this year with 13 surgical scars on my abdomen; now I’m up to 27. If this means I can eat & drink water comfortably again, it’s so so so very worth it! When I went into surgery 12/3, I was down 36lbs since March. I’ve always been muscular, never bony & cannot wait to get some muscles back in this scene.
My median arcuate ligament was so deeply grown in it was almost unrecognizable, but after quite a bit of release work, it bounced back like a crazy rubber band. 3 other compressions were released as well & my surrounding nerves were removed. I can now talk & breathe without pain or passing out & that is a complete joy. Hopefully in ~6 months of major healing I’ll be back to this eating & drinking & moving thing you all do so well!
#MALS #medianarcuateligamentsyndrome #medianarcuateligamentsyndromesurgery #compressionsyndrome #eds #ehlersdanlossyndrome #endometriosis #stage4endometriosis #endowarrior💛 #type1diabetes #mcas #mastcellactivationsyndrome #mybingocardisfull #spoonie
Part 3: Imagine intense jagged/pressure/pain in your chest & organs every time you take a bite of food, speak, take a few steps, walk out into the cold, take a sip…much like a heart attack with extra sprinkles. This is all due to a defect &/or damage to the median arcuate ligament (MALS) that compresses the celiac artery, which gets further compressed & cuts off blood flow/oxygen to the organs every time I try to use it. Breathing becomes labored & sometimes I pass out after eating/drinking. It’s been a job to get 500 calorie a day the past 33+ weeks. Many days I struggle to get through broth & to drink enough water.
My 1st (2/28/24) endometriosis excision team touted healing from removing so much deep endo & the transfusions needed after mass blood loss & it would resolve w/in 8 weeks, but at 10 weeks my lovely internist was concerned at the specific pain I was still enduring + rapid weight loss, so I was tested for MALS & it was deemed the winner with a >70% compression. Surgery - only treatment; MALS surgeons are a rare find! Took 5 surgeon meets to finally find one!
Meanwhile, the endo specialist excision surgery 9/25/24 revealed masses of endo/rupture trauma adhesions built up in my diaphragm & liver + my bellybutton & adhering my colon to my abdominal wall, to my hip & onto itself. Like a fun maze.
I’m off for a celiac plexus block where they insert a needle past my spine, right near my heart & into the celiac plexus to see if that helps to alleviate the pain for a few hours. If I can eat some food without symptoms, I pass this test & I’m a candidate for the risky surgery with a 60-80% success rate.
Living with chronic illness is like running a marathon that never ends. We are incredibly tenacious folks for pushing through all of this! Kudos fellow spoonies
Part 2: Endometriosis robotic excision surgery finally happened! I didn’t know I was waiting ~20 years after diagnosis for this savior to enter my life. A bit of a difference already (2 weeks out).
Surgery was a rough one: going late in the evening with a transfusion needed for my massive blood loss. The surgeon removed numerous endo spots that were deeply embedded in quite a few locations. I did have to lose my uterus, fallopian tubes & cervix, but he somehow saved both of my ovaries with other organs cleaned up along the way. The other surgeon wasn’t able to get in due to the mess unveiled, so another surgery is in order.
Pathology has revealed that no, the amazingly debilitating pain was indeed not in my migraine ridden head. I have Stage IV endometriosis in many locations + adenomyosis + other issues. While surgery is a wild improvement on my symptoms, it’s important to remember this still isn’t a cure. We are together for life.
I know it’s odd to discuss and I’m sure some of you are so very uncomfortable right now; that’s ok. This disease is real, it’s wrecking so many people’s lives while we are ignored (for me in the Upstate NY area). I had to run to NYC for care. I’ll post my list of visits just in this past year for a better view of how daunting and all encompassing this can be. To say we are exhausted is a vast understatement. Stay strong fellow endo-warriors ❤️🩹
*****update: those two weeks were great; then the pain started to creep back. I also have been unable to eat more than a painful bite at a time ever since surgery (now 6 months out) & found out this is MALS. Off to another surgeon who specializes in Stage 4 complex cases like me for even more fine-tuned excision, and hopefully MALS surgery! The story will always continue. This is endo.
Time to put some of that fresh picked rhubarb to use, with a savory twist
Rhubarb + raspberry + lemon thyme + fresh cracked peppercorn (black, green & white) with a hint of vanilla all packed into those seasonal shortcrust fruit crumb bars
Local goodies
@farmergroundflour 🌾
@hillaryrob 🥚
@cabotcreamery 🧈
+ rhubarb, raspberries & thyme from our gardens
Chocolate power packed to the max!
*Chocolate sponge (2 layers)
*Vanilla bean sponge layer snuck in between to fashion this like a particular tuxedo cake the client adores
*White chocolate mousse filling for an airy addition to each bite & a little dark chocolate ganache between the layers too (structure + flavor + more tuxedo-ness)
*Dark chocolate ganache exterior
Local goodies
@farmergroundflour 🌾
@thebirkettmills 🌾
@copperhorsecoffee ☕️
@trinityvalleydairy 🥛
@hillaryrob 🥚
@cabotcreamery 🧈
+ Seneca salt
+ dried edible flowers from the gardens (peppergrass, scabiosa, sculpit, strawflower)
It’s springy out but the kids still LOVE Frozen, so ❄️
Chocolate sponge with vanilla meringue buttercream
+ those natural color powers (so trendy now!)
Local goodies
@farmergroundflour 🌾
@copperhorsecoffee ☕️
@trinityvalleydairy 🥛
@hillaryrob 🥚
@cabotcreamery 🧈
+ Seneca Salt
+ Natural colors: spirulina, lemon, grape, red cabbage
@_jessicatz_ swooped in to fulfill my cake orders while I was in the hospital & look at the cute floral work she whipped up! I’m so grateful to have crafty folks all around me 🤗
Garden party cake for a flower garden LOVER Vanilla bean sponge Raspberry compote filling Caramel meringue buttercream
Dairy free natural color buttercream floral cake Blackberry sage sponge Lavender meringue “buttercream”
Local goodies
@farmergroundflour 🌾
@thebirkettmills 🌾
@hillaryrob 🥚
@trinityvalleydairy 🥛
@cabotcreamery 🧈
+ Seneca salt
+ blackberries, herbs (lavender & sage) & edible flowers from our gardens (brassicas, calendula, celosia, forget me nots, gomphrena, muscari, pansies, roses, safflower, snapdragons, sweet alyssum)
+ natural colors for buttercream florals: green tea, caramel, grape, red cabbage
Dirty boba tea obsessed, but make it a birthday cake
Sikkim tea brewed into the milk with a few jasmine flowers & molasses as the base for this sponge
Coconut tapioca custard filling
Molasses vanilla meringue buttercream
Local goodies
@farmergroundflour 🌾
@thebirkettmills 🌾
@hillaryrob 🥚
@trinityvalleydairy 🥛
@cabotcreamery 🧈
+ Seneca salt
+Natural color/buttercream marbling effect: molasses & caramel
+ edible flowers from our gardens (celosia, strawflower)
