Post-MALS surgery

@jmmb @coffeelatte @worriedmom18 @joyful1 @atjmoney @bpayne @cornishrex @carolina58 @azbluebird @sarah1317 @jamorris9 @bree11 @lmtuska @evrose23 @lisa01 @malsman @artistgma @evileye00 @ruudolpho I wanted to tag each of you on this link. I have been messaging with Dr. W. Park
Chief, Vascular Surgery at Cleveland Clinic Abu Dhabi trained Mayo Clinic School of Medicine. Dr. Park gave me permission to post his notes on a case of MALS and Takayasu's Arteritis. Although this is a very rare combination, I think his blog sheds some light on what MALS patients experience. Here the link: https://vascsurg.me/2016/11/26/takayasus-arteritis-driven-median-arcuate-ligament-syndrome-unusual-symptoms-demand-unusual-solutions/

Thanks again @kariulrich that was an interesting article. My surgeon suggested looking into the celiac block if tomorrow's procedure (if one is done) doesn't help. I don't know what will happen, he will see when he goes in, love that feeling. Don't know if I want him to do something or not. I do in the sense that maybe it will help, but don't because don't want any stay in hospital and recovery time....you all know how that goes, and still feel lousy. Oh well we will see tomorrow....

@jmmb you will be in thoughts all day tomorrow! You got this! Get some rest tonight and we can chat about the celiac block if that is needed. Sending healing hugs and hopefully you will have some awesome results!

Thank you so much!!! I am so glad I found this site and you are awesome!!

@jmmb @ruudolpho How are you doing? Thinking of you both. I have an appointment coming up with the pharmacogenetics department at Mayo in a few weeks. I am hoping we can figure out what medications work best for me. I am tired of all the side effects, trial and error method. I can't imagine having a third exploratory surgery, I am hoping to be able to manage the pain a bit better and get back to a better quality of life. I hope you both are doing well, please let me know when you feel up to it!

Hi @kariulrich I am doing good considering....thanks for asking. I had the angioplasty last week. He went in the groin, but didn't work, so went through the arm. He did a balloon in the celiac. He also then did an ultrasound inside the stent and artery. He showed me the pictures. It was really neat. I never had that done before. I am now open 75% which is fine for me. He said wasn't worth all risks for more and I agree. The pain in the chest area does feel relieved. I feel a lot of heartburn now though. I could've had that before, and just didn't really feel it because of the pain. Still of course have the bowel issues and some bloating. I am going to wait another week and then I will start the low fodmap so I can see if that also helps. For now I will go back in 3 months for ct and check unless worse symptoms. Problems is there is always something so its hard.
So I know you mentioned before your meds, but is there any that are giving you specific side effects? I do have some relief, but it was blocked, but don't know how much. I also have pain when it isn't blocked. So I believe you had said your arteries weren't blocked? It was mostly the nerves. when I asked my surgeon about the celiac block he said that those ganglions (don't know how to spell and really correct word, but you know what I mean), should have been removed in the first open surgery, but he wasn't there so doesn't know if they were. There can still be nerve damage but we will wait and see how this goes. Is that what is part of your issue? Also is fatigue a big part for you. I am always exhausted. I do have Chronic Fatigue, but was doing well with it until my first surgery and then it came out big!!
This MALS is so frustrating because of the damage I think it did, does, continues to do. I just don't know anymore. I am going to take a break from the gi testing for a few weeks. I need a break.
Well good luck to you when you go to your appointment. Hope they can give you some relief. Well let me know how you are doing, hope you are doing well.

So happy to hear from you,I just jumped into bed, but tomorrow I will take the time to answer about my arteries and what they did, I have some other things to share with you too. Ok,.. get some sleep and we will chat tomorrow, hugs

Thank you Kari, I just want to say you are such a wonderful person to take the time to talk to me and so many others. I know when I don't feel well I don't like to talk to anyone, but it really helps with people that understand and are going through similar things. You are a gift!!

@jmmb Thank you for kind words. I do not know how I would get through some days without people such as yourself! I am so glad to hear that your doctor a intraoperative ultrasound, that seems to be the best way they can look at your arteries and what is happening. I think it was good he did not mess around too much, sometimes that can make things worse. I know MALS pain is multidimensional so it makes it difficult for the patient to articulate symptoms. Despite my surgeries I have always had bowel problems, I believe it is the second part of mals that needs to be addressed. This disease affects the vascular system, and when we correct the stenosis we a correcting the medium sized arteries, however I believe damage has been done to the smaller arteries that supply our gut so some of the symptoms remain, diarrhea, constipation, urgency and cramping of the gut. I have tried so many different medications to help my quality of life, but it is hit and miss and it takes so much out of you. I just got pharmacogenetic testing done and will get the results in a couple of weeks. I am hoping this will help figure out what medications work the best for me. There is another mentor, @kdubois, who has been awesome advocating for patients going through pharmacogenetic testing.
I also saw on facebook a company that does some kind of low fodmap home testing... I thought I had saved it now I cant find it! Grrrr I will keep my eye out for it again, it was unique and I thought it looked interesting, hopefully it will pop up on my facebook ads again!

hi @kariulrich I haven't written in awhile because my computer would not load up. I am just going to send this as a test since I have tried writing so many times and it not working.