Hello to all those who are reading this and thanks so much to those who consider helping Madeline and her family get through a stressful time.
A few years ago, Madeline began having what appeared to be GI-related symptoms and her family began the long process of doctors, testing, specialists, and procedures to try and resolve her health issues. In 2021 Madeline was diagnosed with MTS (May Thurner Syndrome) and had a stent placed in her Iliac artery. Instead of feeling relief from her successful stent placement, Madeline almost instantly began to get worse. Madeline began researching her symptoms and she began the long process of testing for additional vascular compressions. In 2022, Madeline was diagnosed with both MALS (Median Arcuate Ligament Syndrome) and NCS (nutcracker syndrome). Due to how rare vascular compressions are diagnosed, our healthcare system lacks the knowledge and experience for Madeline to just find a skilled surgeon in her area and undergo treatment. In August 2022 Madeline and her parents traveled to Baltimore for surgery to address both MALS and NCS in one operation. Unfortunately, the surgeon did not address NCS in the surgery and things got even worse for Madeline.
After returning home to Tennessee, Madeline was unable to eat or even hold down fluids. She very quickly began losing weight and was bound to her home to try and manage her debilitating symptoms. After several attempts to contact her vascular surgeon, Madeline finally began trying to find someone in Tennessee that would help. Madeline was able to push for a HIDA scan to check her gallbladder functionality and it came back that there was ZERO function. In January of this year, she was able to have her gallbladder removed. After having her gallbladder removed, Madeline was also diagnosed with both MCAS (Mast Cell Activation Syndrome) and POTS (Postural Orthostatic Tachycardia Syndrome). In September of this year, she will also undergo testing to be checked for any form of EDS (Ehlers-Danlos Syndromes) as there are several different forms.
To date, Madeline has lost over 70 pounds since her MALS surgery last August. Despite how quickly she has deteriorated, doctors in Tennessee are still not taking Madeline seriously nor are they trying to intervene at all. At this point, Madeline needs out-of-state treatment immediately. Last week she was able to travel to the Cleveland Clinic and her doctor spent over an hour going through all of her symptoms at length. It was determined that Madeline needs an NJ tube to help her get the nutrition she needs in order to try and prevent her from even more dehydration and malnutrition. Madeline is also currently in the process of sending all her records to multiple surgeons that are out of state to try and treat her NCS and SMAS (Superior Mesenteric Artery Syndrome).
In July 2023, Madeline traveled to the Cleveland Clinic and had an NJ feeding tube placed. Unfortunately, she didn't tolerate feeds, and with the doctor's permission, she removed her feeding tube in September. In August of 2023 she traveled to a new Nutcracker surgeon and it was confirmed she has nutcracker syndrome and needs surgery. Later that month she traveled yet again to see a SMAS specialist and it was clear immediately something wasn't right. In September she had a renal block to see if she would be a good candidate for nutcracker surgery and it was successful. She then had a week of testing on her pancreas to ensure there's no issues there and there weren't but there could be issues later down the line so at least she has established care. She finished the month with a small bowel follow-through that showed her duodenum is flipped the wrong way and there's a mass pressing against it. Her surgeon wants to do bowel surgery. Anything she can intake orally gets stuck and causes severe pain. She spent the rest of 2023 trying to get her surgeons to communicate and determine which surgery needed to come first. They finally decided nutcracker surgery should come first and then her team informed her that her nutrition needed to be optimized before they would operate. No doctor in Tennessee will take her seriously so she had to schedule with a GI at her bowel surgeon's hospital and couldn't get in until Feb 2024. She had to force herself to eat and keep herself alive in the meantime.
In February 2024, Madeline and her dad make the trip to see the new GI and have a promising two- to three-hour appointment. He wants to try some meds to see if oral intake can be tolerated and told her to follow up with his NP in about four weeks. Unfortunately, oral intake didn't go well and the NP determined TPN needed to be started quickly. They wanted Madeline to have this done in Tennessee but again the doctors didn't see the urgency so she and her dad headed back out at the end of April/beginning of May 2024 to have this done at the GI's hospital. What should have been a quick trip turned into a 10.5-day hospital stay for Madeline. She had a Hickman line placed and started TPN. She developed low blood sugar and her surgeons wanted this evaluated before operating. Again she was at a halt. She saw an endocrinologist at Vanderbilt in August 2024 and was gaslit horribly. He said her sugars weren't dropping low enough to be anything significant. This wasn't good enough for the surgeons so she scheduled another appointment to get a second opinion at her bowel surgeon and GI's hospital for November 2024. Madeline and her dad set out once again in November 2024. These appointments bring much clarity and relief. The endocrinologist digs deep and doesn't think it's anything serious. She suggests changing her TPN to taper down over two hours instead of one to see if that helps the sugars. She encourages her to eat a midday snack with protein if she can tolerate it. Dermatology and GI were also seen during this trip and all appointments went well. This trip gave the green light for surgeries to be a go.
Madeline will be having surgery in April 2025 with possible bowel surgery later in the year. While they have amazing insurance and she is working full-time to afford everything her body is just exhausted. Her parents love and support her in everything but they are a one-income family and her siblings also have health issues. It's just not possible for them to assist financially at the moment. Madeline is pushing through horrid symptoms day in and day out to work and provide for herself but it's not easy. The hope is that these surgeries will provide her relief but there is that off chance she could worsen and be left unable to work after surgery. There are so many unknowns right now and so much on her shoulders as she works to get her surgery plans in place. If we can help lessen this burden on her let's come together and do that. She is facing high costs currently while she works to meet her deductible for the year. If you can't give then please share this and keep her in your thoughts and prayers. She can't seem to catch a break and would appreciate any help or simply just love and prayers.
Our healthcare system is deeply broken and the cost of trying to treat her chronic illnesses has left Madeline and her family in a stressful situation trying to afford her healthcare. Madeline has to pay for flights to get to her appointments, Ubers to get around whenever she travels anywhere, hotel rooms, food, a new wardrobe is needed due to how much her weight has fluctuated, and even more! As you can all understand, all of these trips and procedures very, very quickly add up. Any help we can offer Madeline will help not only ease her anxiety about how she will afford to get proper care but will also go towards her seeing specialists that know how to correctly test and treat her compressions. Even if you are unable to donate, you can still help by sharing this spotfund or by keeping Madeline in your prayers. We are so appreciative of any help you can give to this young woman and her family! Thanks so much for taking the time to read through this and for any help you can give.
