#Hope4Mia(Lifesaving Sugery-Germany)

Mia’s Story...My journey to Germany began 4 years ago, in 2014, when I started having stomach pains at work. They seemed to occur sometime in the afternoon, often but not always around lunch time, and would send me into gut wrenching pain attacks. I would lock myself in the bathroom and start to vomit and end up on the toilet and break out in a sweat and couldn’t stop throwing up. The pain would build in my gut right at the opening of my rib cage a intense aching pain with intense pain stabs of searing white hot pain every few minutes. I would be doubled over screaming each time and my Dad would rush me to the hospital. Each time would get progressively worse, the attacks lasting for longer amounts of time. First 4 hours, then 6, then 8 now they last up to 12 hours before the pain gets better, even with pain medicine. At the Emergency Room they would ask me what was wrong and I would explain and they would initially have me waiting at time from 2 to up to 7 hours to see a doctor sometimes with no medicine or relief. They ran tests CT, X-ray, blood work but all came back normal. So they would get me “comfortable” and send me home. No diagnosis, no medication, no answers. So I began seeing my Gastroenterologist Dr. Preston Kim who had already saved my life once when I was 18. He began to run every test known to to GI field and then some. First I was told it might be something called sphincter of odi but then another surgeon told me that diagnosis is no longer given. (There’s some debate on that one) then I was told it was my gallbladder. So I had my gallbladder removed in March of 2016. Then 2 weeks into my recovery I had another even worse and more severe pain attack episode, luckily I was already being taken care of by my boyfriend after the first procedure so I wasn’t alone. The attack actually started while we were out and we almost had to go straight to the hospital. So clearly they hadn’t fixed it and I needed more testing. After again test after test came back negative I finally found some answers. He found my stomach only empties at 75% of the usual rate due to a condition called Gastroparesis. And he had a MRA (it’s an MRI but an angiogram meaning the looks at all the arteries and vascular) done and was finally able to diagnose SMAS (Superior Mesenteric Artery Syndrome). That is a condition where the duodenum(the first section of small intestine) becomes compressed between the aorta and the Superior Mesenteric Artery (which is a major artery). SMAS is a very rare vascular compression syndrome affecting 0.013% of the population. It often goes undiagnosed until patients experience major organ damage and debilitating symptoms, at which point it is often too late for surgery. I was fortunate enough to be diagnosed before it was too late but there had already been some damage and side effects (aka the Gastroparesis and other GI dysfunction I was and am experiencing). So based of this diagnosis I needed surgery. So in November of 2016 after almost 2 years of searching for an answer I had a Superior Mesenteric Artery Transposition performed by Dr. Cherry at UVA. (During this surgery they transposed or moved the artery they was causing the compression further down my aorta to release the duodenum, this avoided cutting into my GI tract which is one of the other and more commonly practiced procedures but with a lot more post op complications—mainly that the patients never get better.)My case is different in that I have not gotten better but it’s not because the first surgery didn’t work per se. My initial surgery was successful The surgery was successful but I have had some healing issues due to having EDS (Ehlers Danlos Syndrome a connective tissue disorder). I slowly healed from surgery and then seemed to do a little better but then 3 months after my operation I had another identical pain episode and I continue to have them. After many months and many more doctors and hospital stays I was diagnosed with MALS (Median Arcuate Ligament Syndrome). This is a compression of your celiac artery which affects your upper abdominal organs. However no surgeon would operate on me because my scans all showed an a-typical obstruction and no one could figure out why. FINALLY...Enter Professor Sandmann and Professor Scholbach in Germany. Professor Sandmann is known for being an expert in compression syndromes (which is what my issues are) and his surgical techniques are leaps and bounds ahead of anyone else. He is a pioneer in his field people travel from all over to see him. So I sent him my records and he came back with the most complete diagnosis I have had to date. He was able to confirm why the MALS obstruction is visible and why he believe it is being compressed in an a-typical way. Also that I have obstructed left pelvic flow from May-Thurners. He also spotted the EDS. And he explained something that makes perfect sense, the nature of these syndromes if you fix one compression issue but not the others you’re shifting the stress and putting extra strain on the areas still affected making them even worse, certainly not better. You must treat the system as a whole and fix it all at once, finding a solution that solves all of the problems not just one or two. While they are able to make some initial diagnosis and give me their speculations they need to get a better look at the affected areas. The scans they use in Germany take a different approach as to how they image the abdomen and the angles etc. they are different then how they do it here in the US and without those views the doctors can’t see everything the need to in order to be able to say 100% how best to go forward with the operation. So the next steps are that I have to go to Germany to see Professor scholbach for a more complete diagnostic scan that they have in Germany that is again much more proficient than what we have here in the states now and then based on the findings of the scans I will meet with Professor Sandmann and surgery will happen pretty much immediately (within days). Once he has the newest scans he can finalize his surgical plan. Because it is international, health insurance is tricky. So I have to raise the necessary money. The German doctors require us to raise 30,000 euro which is approximately $36,000. Plus travel and lodging for someone to accompany me to Germany to help me with everything, so my goal is $55,000. If there is any left over money will go towards future medical expenses. We are also asking for donations of Delta sky miles to help us upgrade to first class on the way home. The coach flight would be too much and the point upgrade would be the easiest way to do it. Thank you

{Background: Mia is 30 years old and lives in Maryland. She graduated in 2005 and went to UMBC with the goal of a degree first in photography and eventually ended up studying Anthropology at HCC getting a Associates Degree in 2009. She worked for her family owned business; Paramark Corporation, a Baltimore based manufacturing company, starting part time as an office manager summers when she was 13 until she went full time in February 2009 at the age of 21 and has been there until she had to leave to go on disability due to the chronic illness she currently is suffering from, that was June 2016. Over those 7 years she worked sales, customer service, marketing, shipping, receiving and just about every other department to help grow the family business. On the side she has always done photography, some small weddings for friends, engagements, portraits and especially families and children. She loves spending time with friends and family and especially her boyfriend. She enjoys to dance and go out and spend time outside. She is great with children and hopes to one day have a family of her own. However, since her illness hit three to four years ago her life has slowed considerably. She no longer sees friends as often and finds it a huge struggle to maintain appointments and to leave the house. She takes advantage of every day she feels well but that may be only one maybe two days a week if she’s lucky at this point, the rest of the time she is confined to bed because of the pain and throwing up or severe nausea. She hopes that this operation will be the final answer and the one that is able to save her life and fix all of the issues internally, or at least get everything to a point where she can live out the rest of her life in a way that is actually living again. Your support and any help you can give will be saving her life and giving her a chance at having her future back. Thank you in advance for anything you can do, this is a once in a lifetime chance she thought would never come we all pray every day that the outcome is what we all hope for.}Again, thank you in advance for any support you are able to give every little bit helps and and your generosity means more than you know. You are helping to give me my life and my future back. For that there’s not enough thanks in the whole world. Thank you! Mia
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Mia Danger Freyer 
Jessup, MD
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