Hello everyone.

I’m Lily, I’m in my 20s and dealing with a rare, severe connective tissue/fascia collapse (fascia is the tissue that wraps around and supports muscles, organs, and nerves), that began after thoracic outlet syndrome surgery in 2024. Without weekly high-dose focused shockwave therapy I can’t breathe fully, I limp when I walk, my vision doubles, and I live with extreme pain. However this treatment is out-of-pocket because insurance doesn’t recognize it, and in doing this I can no longer afford groceries or car maintenance (the closest clinic for this is 1.5 hours away). This treatment has an end in sight and improves my condition, however I’m not at a point where my body is stable without it. Without treatment, I will likely become disabled again and eventually die.

I’m fundraising to:

• complete the next several months of treatment
• cover basic expenses
• groceries
• car maintenance to drive to the clinic
  

Any small donation helps.

My story:

Around November 2022, my arm and hand became strained and simply never “un”-strained. Shortly after I began losing blood flow to my arm when lifting it. I began going to doctors to get diagnosed, but as my symptoms worsened and spread throughout my body, no doctor could tell me what was happening. Many said it was neurological but based on my education in biology it didn’t feel that way. I saw every specialist one can think of; autoimmune, muscular, eye, brain, and many other types of doctors. None could tell me what was wrong. Autoimmune and neurological causes were ruled out, as were muscular disorders. Multiple doctors attempted to prescribe me physical therapy times, which made symptoms much worse than before. I had many tests; CT scans, x rays, MRIs, etc.

By mid-2024, I was diagnosed by a vascular surgeon with Thoracic Outlet Syndrome, a rare congenital disorder restricting blood flow and nerve function in the shoulder. I had an operation to remove the first rib in my shoulder to provide space. However, although blood flow returned to my arm, the strain in multiple places and nerve tingling throughout my body worsened shortly after surgery and my body fell apart within weeks, particularly on the left side because that is where the issue and surgery were. The doctors had no explanation at post-surgery follow up appointments, and again prescribed PT which again worsened me greatly.

Ultimately, after thoracic outlet surgery, due to the length of time taken to get a diagnosis and then my body losing my rib as a stabilizer, I quickly developed a severe, whole-body fascia collapse.

My symptoms became as follows:

–My left lung couldn’t expand fully, like someone was forcing their hands on my chest and back as hard as possible.

–My pelvis rotated and I could barely walk normally. I began walking with a limp because of the rotation, which began to sprain my leg because it was an unnatural bend.

–My neck and jaw locked so badly my tinnitus (ear ringing) became unbearable, and I could not swallow food properly on the left side. Food would go down the right side of my throat but not the left.

-My neck became so locked around my vocal cords that I lost my ability to sing (and to talk without strain). I used to love to make music and sing.

-Because my eyes cannot coordinate with each other due to the tigh, dysfunction fascia around them, I am developing a worsening double vision. (It’s not my eyesight, as I’ve been cleared by three eye doctors, including a neuro-ophthalmologist.)

-I am unable to lie on my left side at night or my left side entirely will go numb, and symptoms worsen. I cannot sleep on my stomach because of the way it twists the body further and also worsens symptoms. I have mainly only been able to lay on my right side, but because I have been laying exclusively on my right side for many months, it has begun to need treatment too that I cannot afford.

-And more; general tightness (inability to straighten arm because it’s so tight), etc

Multiple doctors could not give me a diagnosis, but focused shockwave therapy has been the only treatment that measurably restores function. Because this issue is purely mechanical, rather than neurological or autoimmune, it is the only treatment that works. This has been terrifying and I fear I will never live a normal life again, just to swim and take my dog for walks and sing again, all things I now can’t do without making my body collapse.

When I receive high-dose FSWT weekly, I can breathe, walk, and sleep. When I have to stop, everything tightens again and my symptoms escalate. Slowly over time the baseline has gotten better and I’ve seen great improvement in my breathing capability and other strains, but my body is not stable yet and regresses quickly without treatment, especially since I can’t get treatment every week.

Since my body collapses without this treatment I prioritize it over food most of the time. My car has also begun to need maintenance, as the closest focused shockwave therapy clinic to me is 1.5 hours away (3-3.5 hours total per visit).

Based on my current progress, I believe I’ll need at least 6 more months of treatment to be stable. Though I’ll likely need to go for a number of months after, since fascia takes 1-2 years to fully remodel.

Thank you for reading!