Median Arcuate Ligament Syndrome (MALS)

Thanks @kariulrich and Happy Holidays to you as well!! My primary also suggested a cardiologist, but she knew I was tired with all the testing. I still need to do the pharmacology testing thing you did. I start back with testing in Jan. I did enjoy the break off. Do you suggest I get a primary at mayo? I love my primary but since I moved she is 1 1/2 hrs away, but we also email. I love my vascular surgeon, but not my GI dr. Oh well.
Maybe upping your Cymbalta dose may help. I remember it did help me, but like I said so many years ago, don't know if it even helps anymore.
So are you going to school too? I see you said for a paper you are doing. How do you have the energy!!! I admire you for that!! I am on social security disability. I would love to go back to teaching, but even on a good day I don't think I could do it, let alone having 5 in a row and not paying for it with being sick for weeks after......
Well have a wonderful holiday and Happy New Year if I don't talk to you by then. Maybe they will find some answers in 2018 for all of us!!

Happy Holidays @jmmb! I do have lightheadedness from POTS syndrome, I do wonder if the celiac plexus nerves play a role?? There are several others with MALS and POTS although I do not know if it is common. I just actually wrote one of my school assignments on this very topic and found a great article that explains POTS: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5267948/ I know it is very difficult to distinguish MALS pain from chest pain. Do you have a cardiologist you can work with? I worry with not knowing if the pain is chest vs MALS and the dizziness... Please do not hesitate to get worked up. Your health and well-being is a priority! The Cymbalta has improved my mood, however it has not helped with the pain at all. I am on a low dose so we will increase it after the holidays hoping that it gives some relief. I am so sorry about the bloating... it is so uncomfortable! I have several sizes of jeans because I never know what size I am going to be on any given day. I also stopped wearing belts or anything that puts pressure on my abdomen. I hope that you are able to find some relief over the holidays. Please keep us posted!!

Hi I was wondering if anyone has symptoms of lightheadedness often. I had an angio with a balloon done in my stent in the celiac this past Oct. I did feel relief, but I am starting to feel pain in my chest again. It is the same pain I felt before the procedure. It is scary and frustrating. I am scheduled to go in for a scan the end of Jan but if this continues I may need to go earlier. I am light headed often and wondering if this could have anything to do with the compression. Just wondering if anyone else has felt that as well. The bloating after eating is also getting worse. I am so confused if it is sibo or not still.
@kariulrich I was wondering how you were doing. I haven't been on the site for awhile getting ready for the holidays and resting. Has the Cymbalta been helping? Hope you are doing well.

@blessedgma I have not heard of any research on the cardiovascular system post compression. I believe I asked my vascular surgeon that question and there has not been much but case studies here and there. I wonder if it brings out a POTS in some cases, because several patients have described feeling the same way. I do believe that MALS surgery has an effect on the autonomic system. Thank you for asking how I am doing, I am currently losing weight again, having pain after eating and with exertion. I have been working with my primary physician and just seen an amazing cardiologist at Mayo Clinic. Dr. Sharon Hayes. We are in the midst of a cardiac work up to make sure it is not my heart, but truly a MALS situation. The symptoms are so similar. So far my cardiac work up is good. Back to your recovery, you are still in the very beginning phases of your recovery, it was not until week 8-12 that a few things started to normalize slowly! VERY slowly... It is a frustrating recovery because of the long recovery time. Even after 12 weeks it was still difficult for me, each month I would get stronger and feel better and at a year mark it was good. I know that sounds disheartening, but the milestones you make in recovery are so worth the end result of being pain free. To eat that first meal out with friends or family and forget that you have MALS is a freeing amazing feeling! Hang in there. Make sure you are getting enough fluids in, and salty foods... if the symptoms continue please let your doctor know. You may be dehydrated, or having some dystonia. This is a good link to read about POTS and symptoms associated with it: http://www.dysautonomiainternational.org/page.php?ID=30 So good to hear from you! Keep us updated!!

@kariulrich, have you heard of any research in regards to the effects on the cardiovascular system after releasing the compression? My BP seems to drop throughout the day as I feel light headed. I'm thinking it could be post surgery, possibly as I'm just over 4 weeks recovery.
Also, I was wondering how you were doing? A few posts back you were mentioning that you were going back to doc regarding a block?

I wanted to share this link with everyone! I am really excited to see that there is a new non-profit dedicated to compression syndromes: http://vascularawareness.org

Hi @kariulrich and fellow Connect members,

Often, healthcare providers are unfamiliar with identifying and treating patients with rare diseases, but I just want you to know that by sharing your journeys on Connect, you have made an invaluable impact on raising awareness about MALS. There is power in sharing your stories because individual rare experiences help listeners to connect, but more importantly your insights help researchers, doctors further their support and understanding of MALS.

Another great resource is Rare Disease Day (Feb 28, 2018):
https://www.rarediseaseday.org/article/get-involved-organise-an-awareness-raising-activity

@ruudolpho It is so good to hear from you, you have been in my thoughts! How are you doing? Are you still loosing weight? How is your strength holding up? That is a great question about the use of medical marijuana and one I am very interested in hearing the answer. I have not tried medical marijuana and would be overjoyed to see some research done in this area for chronic MALS pain. I asked the same question a few months back on MALS PALS/ Facebook and several patients had tried it and found it helpful. I have not been brave enough to ask my physician about it, but it is something I have been considering for a while. Right now I am trying Cymbalta which has helped my mood, but not the pain. Here is a link of the discussion on MALS PALS: https://www.facebook.com/groups/105633382202/search/?query=medical%20marijuana

Has anyone with post surgical MALS symptoms tried medical marijuana for pain and as an aid to eating more?

@kariulrich , I read your questions last night and knew I had to sleep on it.Like you said, it is so challenging, being social and eating through the holidays!! I'm sure you would all agree that it's not even fun going out to eat with MALS. I really liked your advice of taking eating slowly and eating in small increments. I realize that there are so many scenarios regarding socializing and eating through the holidays, like, if your symptoms are acting up, or if you're having a good day. We truly are at the mercy of our symptoms. I am looking forward to hearing what others say about this question. It's a good one!
As far as the health care provider question: I am learning through this connect site and the Malspals on facebook, how often symptoms can recur. So, I am hoping that those docs who are dealing with MALS patients would be open to realizing that surgery isn't a quick, complete fix to this very complicated issue. I had my last appt with my surgeon, who was wonderful, but I felt as though it was very final. I hope that if I am in need of help in the future, that she would not feel threatened that my symptoms returned.