MALS surgery (Median Arcuate Ligament Syndrome)

Hi, my name is Sara, I'm 27 years old and I am fundraising for a surgery that will improve and save my quality of life. I have been diagnosed with neurogenic MALS (median arcuate ligament syndrome). I am also a chronic illness warrior and spoonie as I have Ehlers-Danlos syndrome (a connective tissue disorder), POTS (a dysautonomia), gastroparesis (stomach paralysis), and a history of Guillain-Barre (I was paralyzed both arms and legs) just 3 years ago, among 16 other chronic illnesses. I’m also a sepsis survivor and viral meningitis survivor!

About MALS: It is not a well-known/understood diagnosis, even in the medical community and I often have to introduce my fellow health professionals to it. There are two types of this diagnosis: vascular compression and neurogenic compression. There are not many health practitioners in the country who work with patients with this diagnosis; additionally, more than half of the health practitioners that work with this diagnosis do not believe in the neurogenic kind of MALS. I experience a variety of symptoms such as debilitating, intractable pain from eating or exercise, nausea, vomiting, diarrhea, constipation, shortness of breath, etc. MALS causes my diaphragm to compress the celiac plexus nerve bundle which in return, gives me all of my symptoms. Because of these symptoms, I have been unable to eat and have previously had to obtain a feeding tube (in post picture). I am now on a medical grade formula that I am able to tolerate in small amounts so that I can get some form of nutrition, however, I’m severely malnourished and take in about less than 600 calories per day at this point. 

About MALS Surgery: Celiac Ganglion Resection: The surgery I need to undergo will involve a specialized vascular surgeon to shave down my diaphragm and pull out the entire celiac plexus nerve bundle. It is an open surgery and I will be cut open from sternum to belly-button. The recovery time is 6 months to 1+ years.

Why Health Insurance Denied: I have been heavily struggling through this diagnosis and trying to get my surgery covered by insurance since May 2022. I went through all of the proper steps to try to get this surgery covered by insurance. The main problem is that I am seeing the best doctor in the country for this MALS diagnosis and he is out of state, making him out-of-network. I have tried the prior authorization, my doctor's office wrote an appeal, and I completed a separate external appeal, which was my last appeal available. I was denied by insurance 3 times and I have exhausted all options with my health insurance at this time. My options were to either cash pay or get a new insurance and try again, however, I would run into the same problems and I would have to wait a significant amount of time longer in order to get the help/care I need. In order for me to get this surgery I will have to cash pay, which has been difficult as I cannot work many hours as an occupational therapist because of how debilitating this diagnosis is and how it has exacerbated all symptoms from my other chronic illnesses.

About Me: I am an occupational therapist currently working with the geriatric/elderly population in a sub-acute rehab (half nursing home, half rehab patients). My dream job is to be working with adults with disabilities once I am able to. I have a 102lb golden retriever who loves to swim and comes to work with me to visit with the patients at the sub-acute rehab! I have grown up volunteering in soup kitchens in Albany and nursing homes in Clifton Park. I love to lift weights/exercise, however, because of MALS, I am currently unable to do that.

Donations: If you can donate anything, that helps me immensely as it will go towards the major open surgery itself, the hospitalization after surgery, and housing (my surgeon is out of state and I have to stay in another state until my first post-op appointment 3 weeks after surgery). This is my third attempt at trying to get this surgery and my surgery date is now scheduled for Sept 20th; I greatly appreciate any efforts that you can donate and/or if you can share this that would be helpful! Thank you for your time, donations, and/or shares!

Contact me directly: my only social media is Instagram so if you would like to reach out directly or follow me, my handle is @sar_gabler

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