你好。我是罗宾。我今年 44 岁，被诊断出患有 MALS（正中弓状韧带综合症又名腹腔动脉压迫综合症、邓巴综合症等）。从孩提时代起，我就总是进食困难，尤其是早上起来的第一件事。我非常热衷于体育运动，包括体操、跑步和骑自行车。我在运动时总是有奇怪的疼痛，但我通常不予理会。随着年龄的增长，我开始有更多的症状 - 我的左眼会发红和疼痛，我经常感到恶心，进食困难，进食时疼痛，皮肤发痒，腹部周围有奇怪的感觉，就像有人在在我的乳房线以下勒死我，等等。我去了无数的医生，所有的测试报告都是正常的。我觉得很疯狂。
2002 年，在症状增加（包括使人衰弱的严重疲劳）之后，我也开始出现严重的膀胱问题（尿频、尿急和无法排空膀胱）。我每天自己导尿 4 次以确保膀胱排空。我被诊断出患有神经源性膀胱（在完成的尿动力学研究中显示为阳性结果）。 我被送到神经科医生那里，经过多次昂贵的脑部扫描和脊柱扫描后，我被告知我可能有多发性硬化症。事情是我不知道（我现在知道了）。多年来，我一直在 MS Clinic 接受治疗和跟踪，等待病变出现。他们从来没有。
又过了几年（确切地说是 7 年），我出现了其他症状，血压发生变化（会升高和降低），我会昏倒，由于血压问题和疲劳（我无论如何都通过了）。然后，有一天在工作时。我晕过去了。我的老板告诉我，我必须去看医生并获得许可才能返回。我心想。叹息，另一个医生。我去了一家“步入式”诊所——他们肯定会做一个正常的快速检查，然后我就可以回去工作了。毕竟，我很瘦而且“看起来”很健康。
这位医生看着我说“这听起来不像 MS”。是的，我知道。哈哈。然后他问有没有人看过我身体的血管系统，他给我做了腹部和骨盆的 MRA。我很生气，因为我不得不支付另一项昂贵的测试费用，这很正常。我错了。医生打电话让我去他的办公室。我有 MALS。
他把我介绍给一位在 MALS 治疗方面有丰富经验的医生。在转介和我的预约之间，我进行了所有已知的测试，包括完整的胃肠道检查 - 结肠镜检查、内窥镜检查、药丸凸轮、X 射线、心脏检查、心脏监测器、钡研究等等 然后当我到达医院 更多测试。他订购了 CTA 和肠系膜多普勒研究。我的医生证实了严重的 MALS。在呼气和平躺时，我被压缩了 99-100%。我的动脉会塌陷并平放在主动脉上，导致血液回流到我的心脏。我计划在 2010 年 10 月进行开放手术。他修剪/切割韧带（将其游离）并修剪所有组织。我还获得了我的第一个大“拉链”疤痕。康复后，我完全解决了每一个症状……每一个。我恢复了正常生活 吃饭、骑自行车，甚至跑了我的第一个 1/2 马拉松。我觉得很神奇！！
大约 3 年后， 我开始出现令人虚弱的恶心、血压变化、严重便秘、疼痛、肠道问题等症状。我的“预约”诊所医生现在是我的初级保健医生！我与他分享了症状的恢复情况，他又下令进行另一次扫描。 CTA 再次显示 MALS。这一次，我还出现了狭窄后扩张，就像腹腔干中的动脉瘤和腹腔动脉中的动脉瘤一样。
我的血管外科医生想尝试进行动脉造影，并可能考虑使用支架来保持动脉畅通。不幸的是，这没有用。手术后，我的腹部出现了血块，并住院了 5 天，因为它符合我的肺部。然后，经过 6 个月的治疗，我又被安排进行开放手术。这次，我的医生计划搭桥/重建动脉。
2014 年 4 月，我进行了第二次开放式 MALS 手术。在手术过程中，由于到处都是大量致密的疤痕组织，外科医生和他的团队认为他们无法绕过我的动脉。它在我的肝脏、脾脏、胰腺和整个腹腔动脉干上，并导致动脉缠绕在我的 SMA 周围。他清理了所有疤痕组织，包括一些额外的神经组织。然后他需要弄清楚如何处理我的乳糜泻，因为它很松软，无法保持打开和处于正确的位置。他还担心未来疤痕组织的发展。因此，他和他的团队进行了世界上第一个围绕腹腔动脉的网膜脂肪包裹。他将它切开并将它完全包裹在我的腹腔动脉周围。这是为了帮助保护动脉疤痕组织，因为疤痕组织不像其他组织那样粘附在脂肪上。他将它缝合到位并留下多个手术夹以保持稳定等。 经过长时间的恢复和另一个长长的“拉链”疤痕，我所有的症状都解决了。我又开始骑山地自行车，跑步，吃饭，再次享受我被赋予的生活。
3 年过去了，我又开始出现一些症状。疼痛、恶心、疲劳、血压问题和胃肠道症状又回来了。 我的扫描显示我的动脉位置看起来不错——脂肪包裹很有帮助！！然而，我的动脉又出现了一个小“凹痕”，很可能是由于更多的疤痕组织。我看了我的医生，并计划进行腹腔神经丛阻滞，看看它是否能缓解症状。我很难正常进食，主要依靠流质饮食，但即使这样也很痛苦。 2017 年 11 月，我的医生办公室将我转介给 同一家医院的介入放射科医生。他觉得支架可能有助于打开我的动脉并防止我进行另一次手术。虽然害怕（由于之前的血块），但我同意了，他成功了，又提供了 6 个月的完全缓解。
症状再次出现，我接受了第二个支架（从第一个支架开始延伸到脾动脉）。到目前为止一切顺利！ 我作为学校系统的心理健康协调员全职工作，喜欢骑山地自行车、锻炼、旅行、吃饭和划船。
无论我们的道路、道路的长度以及我必须进行的干预次数如何，我都不后悔。几年来完全解决症状是一种惊人的感觉。在我继续这段旅程的过程中，我希望每个人和我自己都能如此。
要了解更多关于罗宾的故事，请单击有关她旅程的新闻报道。
Within 4 years, I had visited numerous specialists, spent so much money on meds and supplements and diets, and went to the ER with heart attack symptoms every few months. I decided I was probably going to slowly starve to death and questioned how doctors could keep sending me home while I was losing weight and telling them I couldn't eat. I remember later, when reading the symptoms of MALS, realizing that I said all the right things: it hurts right here (pointing to the spot under my sternum) after I eat; I can only eat easy-to-digest carbs and only in small doses; I'm nauseous all the time, except for the few minutes after I wake up each day; I can't eat if I have to leave the house that day because of the nausea and pain; an hour after I take XYZ medicine that you gave me to help my symptoms, I get pain right here; I can't exercise but especially have to rest after eating; I'm losing weight and fighting significant fatigue, etc.
On one of my many visits to the ER for heart attack symptoms. I didn't want to go but my daughter said my coloring was off. A very thorough, old-school doctor went through the 'old fashioned' way of checking everything, including waiting the 4 hours before discharging, and when his shift was over and the younger doc was signing me out because 'everything was normal,' I mentioned having Celiac Disease and never knowing if that was contributing to my symptoms. I was used to being sent home without answers and I felt silly for being there - again. For whatever reason, this was the moment he realized he should share what the apparently-old-school radiologist had actually written in my CT report: significant narrowing of the celiac artery consistent with Median Arcuate Ligament Syndrome. The recommendation? Patient should follow up with a vascular surgeon ASAP. That's when it all changed.
I was referred to a local vascular surgeon, but I started doing my own research and realized how rare this condition was. Surely this local dude wouldn't know anything about this?!? So I scheduled an appointment with a specialist in another state, which would be 4 months away. My 20 pieces of dry cereal spread out over the course of the day got me through the week to the initial consult with the local vascular surgeon, who turned out to not only KNOW about MALS but to have done his residency with a surgeon who taught him how to treat it - and he had done numerous of them since being in practice! Whew, that was shocking and amazing and now I was scheduled for surgery!
I had an open surgery with MAL resection and celiac artery bypass since my artery was scarred (this happens after a long time of compression), and my recovery was pretty textbook. I spent a few days in the hospital, went home with some pain meds and told to walk as much as possible. I had scheduled a follow-up appointment with my gastroenterologist for a month after surgery so that we could go over a full recovery plan, and she put me on some IBS meds and a special diet so my digestive system could 'learn how to function with proper bloodflow.' This helped for 6 months, and then I was pretty much eating normally, with the exception of some foods that had become triggers for IBS. The next year would show intermittent issues that sent me back and forth to the doctor again, and we have come to realize that my pancreas and gallbladder are permanently affected by the years with improper bloodflow and nerve involvement. I take pancreatic enzymes every time I eat, I have lots of food intolerances, and I will have to have my gallbladder removed at some point in the very near future. But I can eat more than dry cereal, my nausea is a thing of the past, I am working full time again, and I can exercise without pain. MALS disrupted my life in a significant and lasting way, but it has also taught me that the very smallest things, things like taking a walk on a nice day, eating a holiday meal with family, and taking road trips, are things to be appreciated and never taken for granted.