Help Sia heal from hEDS & TOS
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Hi! My name is Sia and I'm a 25 year old tattoo artist living in Florida. I struggle with a condition called hypermobile Ehlers-Danlos Syndrome, which means the structural collagen in my connective tissue is defective, leading to an array of symptoms, pain, and comorbid conditions. Over the past few years, my symptoms have become so debilitating that my quality of life has been destroyed and the majority of my time is now spent at home, unable to do most of the things I love... including tattooing.
I have seen countless doctors and been on countless medications (that were ineffective AND had horrible side effects) over the past few years with no success in improving my worsening pain. I am now seeking treatment that may help me greatly, but is not covered by insurance, and I desperately need help.
Background:
I have had symptoms related to EDS since I was a child, but unfortunately, most doctors don't really know much about it and because of this, I was constantly gaslit and blown off - told that my pain wasn't real and I was just "double-jointed" and all of my symptoms were actually anxiety or depression related. I spent over a decade in competitive gymnastics growing up, even being diagnosed with joint related issues as a child (including Sever's disease and Osgood-Schlatter disease), and still EDS was never on the radar. Navigating our healthcare system as a young woman (especially with an alternative style) is already incredibly difficult - but when you also factor in the existence of rare "invisible" illnesses, it becomes a hundred times harder. I was not finally taken seriously and diagnosed with EDS until just August of 2022, and though the news was hard to hear, I was so relieved to finally be validated and have an actual explanation for my debilitating symptoms.
A little over two years ago, I began to develop symptoms of thoracic outlet syndrome - another "rare" condition, but one also associated with EDS. It first began in my right arm and I was misdiagnosed with tennis elbow, and then misdiagnosed with carpal tunnel syndrome, and then misdiagnosed with carpal tunnel AND cubital tunnel syndrome, and then... somehow, told by multiple doctors that nothing was actually wrong. My neurologist told me I was just aggravating my nerves and I should take some ibuprofen, even after ending up in the ER because I nearly burned a hole in my stomach from all the NSAID's I was taking. I remember sobbing in my car after multiple specialist appointments, especially the one where my orthopedic surgeon told me I was perfectly healthy because I was young and thin, and asked if perhaps I had depression that was manifesting as physical pain due to stress.
If I was depressed, it was because I suddenly went from being an athlete and an artist to not being able to get out of bed and having to reschedule my tattoo appointments because I was in too much pain... not the other way around.
Eventually, after being failed by a dozen doctors over the course of a year and only getting worse, I did a deep dive into the internet and medical facebook groups and discovered that my symptoms aligned perfectly with EDS, dysautonomia, POTS, joint instability, and a condition called thoracic outlet syndrome. Finally, I saw a vascular surgeon and was diagnosed with bilateral (both sides) thoracic outlet syndrome and pec minor syndrome.
Thoracic outlet syndrome combined with joint and cervical instability from EDS causes nerve & muscle pain in the entire upper half of my body - my neck, my shoulders, my back, my elbows, my ribs, and my wrists. My daily pain level ranges from a 5-9/10 and the pain never stops; I never get a break. I went through months of physical therapy before I was diagnosed with EDS, and because my therapists did not know how to work with my body, it only made my symptoms a hundred times worse. Some months I was able to knock out 10-15 tattoos ( compared to ~30 before) and some months... I couldn't even get out of bed because the pain was so excruciating.
Currently:
In November of 2022, I made the painful decision to take a break from tattooing because even a small, hour long tattoo would send me spiraling into a huge flare up lasting weeks. Thoracic outlet syndrome is partially caused by poor posture and repetitive movements, especially with a vibrating machine, which might as well be the literal definition of tattooing. I realized that my body could not heal while I continued to do what was a major contributor to the condition I developed.
I was recommended surgery for TOS starting with my right (worse, and dominant) side, which includes removal of the first rib, removal of two out of the three scalenes, neurolysis of the brachial plexus, and detachment of the pec minor. It is an incredibly risky surgery with a very long healing time (up to two years!), no guarantee of improvement, and only a handful of surgeons in the US with the qualifications and experience necessary to perform it correctly. After consulting with several surgeons and my primary care doctor (who specializes in EDS and dysautonomia), I have come to the conclusion that this surgery is very likely to worsen my symptoms rather than improving them because of my EDS and instability.
My pain is currently at a somewhat tolerable level (5-6/10 usually) thanks to medication and the fact that I'm not tattooing anymore, but my quality of life still exists at a level that I would not wish on anyone. I have debilitating fatigue and pain every day, and am limited in the activities I can do even around the house. I've tried many different medications over the past two years, but they're all just band-aid fixes, and most have either been ineffective or had unbearable side effects or both - gabapentin didn't help my pain at all, and gave me such debilitating brain fog that I couldn't even remember my own address or age.
Through educating myself, support groups, and finding friends with similar conditions, I have been able to make lifestyle choices that help a little bit and find good doctors that are able to help me, but it comes at a large cost.
Between doctor's appointments, physical therapy, imaging, and medication, we spent over $10,000 out of pocket last year on medical expenses. The burden of helping me afford this and basic life expenses has been placed on my partner, my parents, and credit cards, and now that I can't work anymore, I've exhausted all of my available options. CareCredit closed my account out of nowhere for no reason. My partner and I recently downsized to an apartment half the cost of what we were paying before, and have cut all unnecessary expenses in an effort to make ends meet and still afford the bills, dog food, and my medical care.
Game plan:
I have come to accept the fact that I will realistically never be able to tattoo full time again, but I am hoping that through prolotherapy and a physical therapy protocol specified for my body, I will be able to tattoo again part time by the end of 2023. I am planning to supplement tattooing with product sales, and am soon launching a brand to monetize my artwork. Sometime in the next couple years, I would like to open my own tattoo studio.
I have been consulting with the doctors at Caring Medical in Fort Myers, FL and am so lucky to have a team so knowledgeable on my conditions just 2.5 hours away from my home. I plan to pursue prolotherapy treatments with them - a regenerative treatment that has helped many people with and without EDS find relief from their symptoms by addressing the root of the problem rather than slapping a band-aid on the symptoms. The doctors at Caring Medical specialize in treating EDS and cervical spine instability.
Prolotherapy consists of 3-8 sessions of a series of injections to the ligaments (usually every 4-6 weeks) to strengthen them and provide more stability to the joints. For context, we have over 900 ligaments in our bodies and those ligaments are typically short and stocky so they can keep your bones and joints where they need to be. Because EDS causes the connective tissue to be faulty, and we have connective tissue all throughout our body, our ligaments become long and stretchy instead, contributing to joint instability. During prolotherapy, the ligament is injected over 100 times to damage it and stimulate healing, causing the ligament to eventually shorten and strengthen.
My theory is that a large amount of my pain stems from my muscles, which are unable to ever relax (sometimes even with the use of muscle relaxers) because they are compensating for my ligaments and instability - so by addressing the instability and strengthening my ligaments and muscles, I should be able to reduce a substantial amount of pain and improve the overall structure of my body to prevent future problems.
I will have to treat several areas with prolotherapy - including my neck, shoulders, wrists, and back. I have an in-person consultation and extensive evaluation scheduled this month, and this will run me right around $3,000. Unfortunately, because prolotherapy is considered "alternative medicine", insurance (which we pay $400 a month for) will not cover the cost of it.
Here is the pricing for prolotherapy treatments:
Any money donated will be used solely for medical expenses - prolotherapy treatments, physical therapy, diagnostic imaging, medication, etc. I will try to provide updates on this page when I can, but I will be posting more frequent updates on my ko-fi blog:
One contributing factor to TOS is the presence of cervical ribs or bony abnormalities which I am still unsure if I have - but if I do, they will have to be surgically removed. No amount of prolotherapy or physical therapy will be able to compensate for extra bone causing compression. Depending on how my evaluation and treatment go, I may need to see a different surgeon to address potential scar tissue causing compression in the area of my brachial plexus.
I know that I tend to write a lot, so if you've gotten this far - thank you.
It's impossible for me to describe the nightmare I've gone through in the past few years without writing a full novel, so I summarized it here as best as I could without going into boring medical details (but if you're into boring medical details like I am, please keep an eye on my ko-fi blog for more in depth posts!) and truly, there is nothing I want more than just some semblance of my life back. My physical health has been detrimental to my mental health, but I am trying so hard to stay positive and keep putting in the work to see results and hopefully, maybe, one day be something close to the person I was before my health plummeted. It's a terrible feeling to look in the mirror every day and not even recognize yourself.
Current diagnoses:
-hEDS (hypermobile Ehlers-Danlos syndrome)
-dysautonomia
-POTS (postural orthostatic tachycardia syndrome)
-CCI (craniocervical instability)
-bilateral nTOS (neurogenic thoracic outlet syndrome)
-bilateral pec minor syndrome
-slipping rib syndrome
-snapping scapula syndrome
-osteoarthritis
-ulnar nerve entrapment
-bulging discs
-reversal of cervical lordosis
-Raynaud's syndrome
-neuropathy
-vasovagal syncope
-endometriosis
-pelvic floor dysfunction
-gastroparesis
Resources & education:
Hypermobile Ehlers-Danlos syndrome:
Dysautonomia:
POTS:
Thoracic outlet syndrome:
Prolotherapy:
Organizer
Sia Theodora
Organizer
Tarpon Springs, FL