Hi @jmmb,

Thanks so much for sharing this information! I can’t imagine dealing with this for as long as you have. This is definitely a frustrating diagnosis. After reading the post and at the recommendation of my pcp, it sounds like I definitely need more test and information. While I am eating small meals, I still have issues. The vascular doc that was consulted in the hospital has referred me to another vascular doc so I will call him tomorrow. The information I have gathered from this site has made me better prepared with questions I will ask the new doc.

If anyone in the Dallas area can recommend doctors experienced in this, I would appreciate it. Thanks!

Hi @annief ,
My original surgeon that did my surgery is a Baylor University Hospital and he is chief of vascular surgery. His name is Joseph Mills. He was really great. You can go to their web site and look under vascular surgeons. I learned so much from this site. I had no idea going in to my surgery. I learned it all after. The more knowledge you have, the better you will be able to make decisions. Good luck!

I may know of someone... not positive if the is the Dallas area of Texas. I will check with a friend of mine and let you know. If you can travel I would recommend Mayo, Cleveland Clinic, or University of Virginia .

Traveling to the Mayo Clinic is not an option for me at this time. I have gone back and read a lot of the post. I feel for so many with this condition. I just can't imagine dealing with this as a young person or with little children. Ugh! I am doing so so for now. Trying to deal with the emotional element of this. Sadness, frustration, I’m sure everyone knows. People do not understand. They ask how you are doing and I just have to say better, when I am really not but it is TMI. The thought that I may not be able to do some of the things I enjoy is disconcerting. For instance on vacation I was so hesitant to go kayaking which I enjoy but just like the eating, I don't want to get myself in a situation that will aggravate the pain. My stomach symptoms have been slightly better so maybe the blood thinner is helping that. Who knows. Other days they are not so good.

Just when I think the pain in one area could be better, I get pain somewhere else. As I have read through the post, there are so many different symptoms with this! I am holding out hope that I will not have to have the surgery but think it could be inevitable. So for now I am researching doctors. And everyone here knows the frustration with that. I saw a vascular surgeon last week who would do a robotic laperoscaepic procedure to cut the ligament and some of the nerves in that area. I appreciate everyone's post. Seeing what others are going through is very helpful. At this point I am seeking opinions from doctors and still hoping the blood thinner I’m on for the pulmonary emboli will help me avoid surgery.

A couple of questions...if left untreated, does the compression get worse. Also, I can no longer sit with my arms crossed. It literally is uncomfortable to have pressure in that area. Does that sound familiar?

@annief it sounds very familiar, not being able to sit with crossed arms. I could not sit at computer table or other sitting chore. Bending over made me scream.

Thanks @astaingegerdm. Since your surgery, is that better, Can you exercise, bend over like normal?

@annief It was amazing! I had no problem at all bending etc right away.

My surgeon said probably two days in the hospital and probably only miss one week of work. Does that sound familiar to yours? I sit at a desk all day.

@annief I wish I could be of more help in the recovery time is for robotic surgery, the one thing I can recommended is that no matter what type of surgery you have... you must take eating again very slow! It is wonderful to have less pain, and it is so easy to over do it! I also can relate to the pain you feel with sitting with your arms crossed... yes that is REAL!! Please know I am a chronic MALS patient, so I have had several surgeries... many people have one and are cured. For me, I have a difficult time due to other diagnosis on top of MALS, however I the good I get out of it is that I can help others who have similar symptoms or complications. So... back to the arms crossed, for me... when the pain is bad I cannot wear a bra... way too constricting, also with the weight loss you get to be a little more bony which causes pain with undergarments! Sorry men that are reading this.... but its true. Also, wearing a belt for me can be uncomfortable...which does not make a lot of sense since it is lower on the abdomen, however... it is still constricting. My one question to you is how will the surgeon determine if the artery has good blood flow after the release of the ligament? Did he explain? I am so excited that there are less invasive ways to treat this condition, so I look forward to hearing about your journey. For many of us, the longer the compression, the harder it is for that artery to go back to its normal shape. My surgery was open, and after the ligament was cut my artery was still kinked, verified by inter-operative ultrasound. I had a celiac bypass done, also it was discovered that the compression had resulted in increased velocities in my hepatic/splenic artery and a patch angioplasty was done to correct that. I was in my early 40's for my first surgery. I hope this helps! Please feel ask questions! Good to have you here.

He did not say. Maybe he thinks we will know if I get better and go from there. It is my understanding the surgery is the only treatment. The ligament has to be released. I am going to ask him about the Doppler ultrasound. Am also going to see another surgeon so I will see what his recommendation is. Your recommendation to eat small amounts is appreciated. It is easy to forget when you are hungry.