MY Story
I struggled for months with symptoms that were difficult to explain and even harder to diagnose.
What started as pain, fatigue, dizziness, digestive issues, & exercise intolerance eventually led me down the path of discovering conditions like MALS & the complex reality of living with chronic illness.
I spent countless hours researching, advocating for myself, meeting with specialists, and trying to piece together answers while still attempting to live a normal life.
The journey included uncertainty, setbacks, surgery, recovery, & learning how deeply these conditions can affect both physical & mental well-being.
Whether you are newly diagnosed, searching for answers, preparing for surgery, supporting a loved one, or simply trying to understand what you’re experiencing — I hope this site can provide encouragement, information, & a sense of community along the way.
My Timeline
How it started - 2019 Thanksgiving
In September 2019, I got food poisoning and never truly got better. Over time, my symptoms slowly became more severe, leading me down a long & difficult journey searching for answers.
Testing/ All Negative
I endured extensive medical testing with almost everything coming back “normal.” In that short period of time, I probably had more tests than most people experience in their entire lives.
CT scans, X-rays, blood work, ultrasounds, colonoscopies, & more.
While it was reassuring that nothing major was immediately found, it also left me without answers. The pain, symptoms, & decline in my health were very real, yet every result seemed to say otherwise.
That uncertainty became one of the hardest parts of the journey.
Change Doctors
I initially began with one doctor who, over time, I felt was no longer truly listening to me or taking my symptoms seriously. Eventually, I made the difficult decision to move on & advocate for myself.
During this time, my brother-in-law, Dr. Brian Solomon, had been closely following along with everything I was experiencing. If it wasn’t for him, I may have gone many more months without answers.
Dr. Solomon remembered learning about MALS in medical school & encouraged me to look deeper into the possibility of vascular compression syndromes — something that ultimately helped change the direction of my journey.
Diagnosis - April 2020
I eventually learned about Dr. Hsu through the MALS Facebook support group. Thankfully, he was relatively close by in Stamford, Connecticut.
After an in-person evaluation, ultrasound, & reviewing my symptoms, he recommended a celiac nerve block.
Celiac Nerve Block
For the first time in a long time, the nerve block worked. I was pain-free and able to eat again. It finally gave us answers & a direction forward.
Dr. Hsu recommended surgical intervention, but there was a 3–4 month waitlist and the pandemic was ramping up.
At that point, I was desperate — in constant pain, rapidly losing weight, & struggling physically/ mentally from everything my body had been going through.
Flew to florida
I could not wait months for surgery. I was on TPN, in constant debilitating pain, rapidly losing weight, & struggling just to get through each day.
2020 - COVID: Hospitals began shutting down procedures that were considered “elective.” Somehow, despite how severe my condition had become, MALS surgery fell into that category. Waiting was not an option for me.
Thankfully, my family — including Dr. Brian Solomon (Brother in-law — lived in Naples FL. He introduced me to Dr. Robert Grossman, who had experience helping a few previous MALS patients. That connection ultimately gave me hope during one of the darkest points of my journey.
Laparoscopic MAL Release
Dr. Grossman performed a laproscopic procedure where he cut the median arcuate ligament & dissected some of the nerves.
It was a pretty quick recovery and I was pain free/symptom free for almost 8 weeks.
Unfortunately, pain & symptoms returned. Sometimes this procedure is enough for patients, however not in my case.
Open Ganglionectomy - Dr Iranamesh
Open Celiac Artery Bypass - Dr Menard
10 hour surgery - 4 days in ICU - 1 blood clot - 10 days at the hospital