Median Arcuate Ligament Syndrome (MALS)

I am looking for other patients that have been diagnosed with Median Arcuate Ligament Syndrome. Although it is caused by compression of the celiac artery many people experience abdominal pain after eating, diarrhea, food avoidance. Usually the first doctors they see are GI doctors. It is a diagnosis that is made after everything else is ruled out. I am curious if anyone else has had surgery?

@jmmb

Hi @kariulrich and everyone else who knows a little about my history. I am hoping someone can give me some guidance/advice on how to handle, or what to do on something. I thought going to Mayo, all the different drs. were suppose to meet and discuss your individual case. Mine don’t. I love my vascular surgeon, I am not to happy with the GI dept. I have a ‘fellow’ and my vascular surgeon said I should ask for the attending dr instead. He is not happy with that dept either. Then my primary wants me to see a cardiologist. she also thought I could maybe have POTS, like you had mentioned Kari. I have the light headedness, tingling in feet and hands, and low blood pressure besides the constant fatigue. I can’t get in to the cardiologist at Mayo until end of May, so maybe my surgeon can do something on that. I don’t want to be disrespectful or hurt feelings, but I need answers and want to know why aren’t drs talking to each other. I feel like I am the one to do the research and bring the information, and then I feel like they may think I am ‘looking for something wrong’ or something. If tests are ok then I am okay, well not if I don’t feel right. Anyway, I am frustrated and just afraid when I go next week to the follow up surgeon visit for imaging from the balloon in celiac artery in Oct. I am not going to ask what I need and get any answers and leave in pain with nothing new. Believe me, I don’t want anything wrong or any procedure, but some answers or something, you know what I mean…..
Tired of being in pain, and tired all the time and feel like I find so many connecting things, but why don’t they you know. ???
Oh well, Kari I hope you are doing better on the Cymbalta. I am doing the pharmalogoical testing. My dr. just got the kit in, but since I have moved, it takes me 1 1/2 hrs to get to her, so not sure when I will get there again. She is awesome and I don’t want to loose her….
Well if anyone has any advice or has felt this way, please let me know. Thanks

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Thank you for sharing some very wise insight, @joant10. I sincerely believe that most doctors want to do a good job and help their patients as best they can, and we can maximize their (doctors’) ability to help by also taking responsibility for our own care.
There is a saying, often quoted in medical school: “A patient’s body frequently fails to read the textbook.”

@joant10, we’re so glad you’ve joined this discussion; may I ask what brings you to this group?

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@jmmb

Hi @kariulrich and everyone else who knows a little about my history. I am hoping someone can give me some guidance/advice on how to handle, or what to do on something. I thought going to Mayo, all the different drs. were suppose to meet and discuss your individual case. Mine don’t. I love my vascular surgeon, I am not to happy with the GI dept. I have a ‘fellow’ and my vascular surgeon said I should ask for the attending dr instead. He is not happy with that dept either. Then my primary wants me to see a cardiologist. she also thought I could maybe have POTS, like you had mentioned Kari. I have the light headedness, tingling in feet and hands, and low blood pressure besides the constant fatigue. I can’t get in to the cardiologist at Mayo until end of May, so maybe my surgeon can do something on that. I don’t want to be disrespectful or hurt feelings, but I need answers and want to know why aren’t drs talking to each other. I feel like I am the one to do the research and bring the information, and then I feel like they may think I am ‘looking for something wrong’ or something. If tests are ok then I am okay, well not if I don’t feel right. Anyway, I am frustrated and just afraid when I go next week to the follow up surgeon visit for imaging from the balloon in celiac artery in Oct. I am not going to ask what I need and get any answers and leave in pain with nothing new. Believe me, I don’t want anything wrong or any procedure, but some answers or something, you know what I mean…..
Tired of being in pain, and tired all the time and feel like I find so many connecting things, but why don’t they you know. ???
Oh well, Kari I hope you are doing better on the Cymbalta. I am doing the pharmalogoical testing. My dr. just got the kit in, but since I have moved, it takes me 1 1/2 hrs to get to her, so not sure when I will get there again. She is awesome and I don’t want to loose her….
Well if anyone has any advice or has felt this way, please let me know. Thanks

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Thank you @kanaazpereira . I just don’t like to cause any problems. I don’t want anyone to get ‘in trouble’ if you know what I mean. I will call and ask about the collaboration part though. Like I have said, I do love my vascular surgeon. Maybe I can get another opinion from the GI dept. and that would make me feel better.
Thanks again.

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@kariulrich

@ruudolpho Cleveland Clinic has an amazing vascular clinic, I have had the opportunity to follow a patient through their appointments many years ago and I have to say they did a tremendous job in caring for this patient. I am happy to hear the Lyrica has given you some relief, and the ability to sleep at night. I do think not sleeping contributes to the pain. Have you noticed any side effects from the Lyrica? May I ask if you have lost any additional weight? I just posted several links on a response to @jmmb about pharmacogenetic testing, I will post them here also. I am sure Cleveland Clinic has this type of testing, for me it was helpful to know how my body metabolizes meds and which meds are better suited for me. It is so time intensive and not much fun going through different meds to see which ones work. This is the company that did my testing at Mayo, you do not need to have it done through Mayo, but you do need a doctor to order it: https://oneome.com also this explains what testing can help with: http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp It is rather complicated and I found it helpful to go through the individualized medicine department. I am very interested to hear what you think about medical cannabis! I have never had vitamin and minerals checked, that is very smart thing for all MALS patients! I appreciate you sharing that, I would think as our bodies are so malnourished this would be helpful in getting out health and well-being back on track. It is good to hear from you Lou!

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Do you think they gave you Toradol? That is an anti-inflammatory given for pain.

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@kariulrich

@ruudolpho Cleveland Clinic has an amazing vascular clinic, I have had the opportunity to follow a patient through their appointments many years ago and I have to say they did a tremendous job in caring for this patient. I am happy to hear the Lyrica has given you some relief, and the ability to sleep at night. I do think not sleeping contributes to the pain. Have you noticed any side effects from the Lyrica? May I ask if you have lost any additional weight? I just posted several links on a response to @jmmb about pharmacogenetic testing, I will post them here also. I am sure Cleveland Clinic has this type of testing, for me it was helpful to know how my body metabolizes meds and which meds are better suited for me. It is so time intensive and not much fun going through different meds to see which ones work. This is the company that did my testing at Mayo, you do not need to have it done through Mayo, but you do need a doctor to order it: https://oneome.com also this explains what testing can help with: http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp It is rather complicated and I found it helpful to go through the individualized medicine department. I am very interested to hear what you think about medical cannabis! I have never had vitamin and minerals checked, that is very smart thing for all MALS patients! I appreciate you sharing that, I would think as our bodies are so malnourished this would be helpful in getting out health and well-being back on track. It is good to hear from you Lou!

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Hi Kari, yes I think they did, then they gave me oxycodone. I feel better, but still achy all over. I am getting more chest pain again, and light headedness and tingling in fingers and toes. I posted another post that I am going to my surgeon WED and was hoping he can push up my cardiologist appt. Also wanted advice on how to ask why aren’t the drs. collaborating??? I thought that was the point of Mayo. Love my vascular surgeon, so I am researching and making a list of questions for him. I am afraid though they just don’t have answers. Hope you are doing better!

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@jmmb

Hi @kariulrich and everyone else who knows a little about my history. I am hoping someone can give me some guidance/advice on how to handle, or what to do on something. I thought going to Mayo, all the different drs. were suppose to meet and discuss your individual case. Mine don’t. I love my vascular surgeon, I am not to happy with the GI dept. I have a ‘fellow’ and my vascular surgeon said I should ask for the attending dr instead. He is not happy with that dept either. Then my primary wants me to see a cardiologist. she also thought I could maybe have POTS, like you had mentioned Kari. I have the light headedness, tingling in feet and hands, and low blood pressure besides the constant fatigue. I can’t get in to the cardiologist at Mayo until end of May, so maybe my surgeon can do something on that. I don’t want to be disrespectful or hurt feelings, but I need answers and want to know why aren’t drs talking to each other. I feel like I am the one to do the research and bring the information, and then I feel like they may think I am ‘looking for something wrong’ or something. If tests are ok then I am okay, well not if I don’t feel right. Anyway, I am frustrated and just afraid when I go next week to the follow up surgeon visit for imaging from the balloon in celiac artery in Oct. I am not going to ask what I need and get any answers and leave in pain with nothing new. Believe me, I don’t want anything wrong or any procedure, but some answers or something, you know what I mean…..
Tired of being in pain, and tired all the time and feel like I find so many connecting things, but why don’t they you know. ???
Oh well, Kari I hope you are doing better on the Cymbalta. I am doing the pharmalogoical testing. My dr. just got the kit in, but since I have moved, it takes me 1 1/2 hrs to get to her, so not sure when I will get there again. She is awesome and I don’t want to loose her….
Well if anyone has any advice or has felt this way, please let me know. Thanks

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@jmmb There is a GI doctor at mayo rochester who understands the vascular nature of MALS, but I have seen several also who are not familiar with this diagnosis, but with that said they are specialist and usually hand you back to your primary. In my experience GI does not follow chronic MALS, however they should be communicating with your team of physicians. I believe that since MALS is so rare there is not a good understanding of the disease, especially when all of our GI test come back normal. It can be quite frustrating. There has to be a better way to educate our physicians and specialist in what we experience. MALS dramatically affects the quality of life many of us lead, and it can be quite severe at time. What makes this diagnosis difficult is that some MALS patients do not have symptoms return, unfortunately for those of us who are chronic MALS patients we become more complex to treat. What I recommended is keep communicating with all specialist and advocating for yourself, tell them your concerns as you stated here. I do not know of one physician who would be opposed to hearing your frustrations and your experience. I have always shared the good and bad with my doctor’s, you would be surprised how open they can be once they have a complete understanding of the problem.

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@jmmb

Hi @kariulrich and everyone else who knows a little about my history. I am hoping someone can give me some guidance/advice on how to handle, or what to do on something. I thought going to Mayo, all the different drs. were suppose to meet and discuss your individual case. Mine don’t. I love my vascular surgeon, I am not to happy with the GI dept. I have a ‘fellow’ and my vascular surgeon said I should ask for the attending dr instead. He is not happy with that dept either. Then my primary wants me to see a cardiologist. she also thought I could maybe have POTS, like you had mentioned Kari. I have the light headedness, tingling in feet and hands, and low blood pressure besides the constant fatigue. I can’t get in to the cardiologist at Mayo until end of May, so maybe my surgeon can do something on that. I don’t want to be disrespectful or hurt feelings, but I need answers and want to know why aren’t drs talking to each other. I feel like I am the one to do the research and bring the information, and then I feel like they may think I am ‘looking for something wrong’ or something. If tests are ok then I am okay, well not if I don’t feel right. Anyway, I am frustrated and just afraid when I go next week to the follow up surgeon visit for imaging from the balloon in celiac artery in Oct. I am not going to ask what I need and get any answers and leave in pain with nothing new. Believe me, I don’t want anything wrong or any procedure, but some answers or something, you know what I mean…..
Tired of being in pain, and tired all the time and feel like I find so many connecting things, but why don’t they you know. ???
Oh well, Kari I hope you are doing better on the Cymbalta. I am doing the pharmalogoical testing. My dr. just got the kit in, but since I have moved, it takes me 1 1/2 hrs to get to her, so not sure when I will get there again. She is awesome and I don’t want to loose her….
Well if anyone has any advice or has felt this way, please let me know. Thanks

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Thank you @kariulrich. by the way my name is Jill. I just got done joining facebook and the MALS pals. I never had a facebook page because of being a teacher and all the kids kept asking me if I had one and wanting to write me. I didn’t want any issues, take any chances , with the way the world is today unfortunately, so I would just give them my school email. I miss them….Anyway, I feel so old not knowing how to navigate the site!!!! I totally understand what you are saying. I guess deep down I was hoping, wow Mayo, I’ll go there get answers and be fixed!! Yeah right!! At least I understand more about MALS that is for sure, but mostly from you and others on the site, and of course research. This site has been wonderful in that I know I am not alone, or crazy or a hypochondriac. I just feel that the surgeon is really focused only on the vascular part, even though it does effect the GI stuff so they should work together. I was thinking of asking for another GI dr. there for a second opinion. I am in Arizona and I couldn’t make a trip to Rochester, but I have heard their GI is the best….Well thank you again for your advice and support. I will see what happens on Wed.’s appt.

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@kariulrich

@ruudolpho Cleveland Clinic has an amazing vascular clinic, I have had the opportunity to follow a patient through their appointments many years ago and I have to say they did a tremendous job in caring for this patient. I am happy to hear the Lyrica has given you some relief, and the ability to sleep at night. I do think not sleeping contributes to the pain. Have you noticed any side effects from the Lyrica? May I ask if you have lost any additional weight? I just posted several links on a response to @jmmb about pharmacogenetic testing, I will post them here also. I am sure Cleveland Clinic has this type of testing, for me it was helpful to know how my body metabolizes meds and which meds are better suited for me. It is so time intensive and not much fun going through different meds to see which ones work. This is the company that did my testing at Mayo, you do not need to have it done through Mayo, but you do need a doctor to order it: https://oneome.com also this explains what testing can help with: http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp It is rather complicated and I found it helpful to go through the individualized medicine department. I am very interested to hear what you think about medical cannabis! I have never had vitamin and minerals checked, that is very smart thing for all MALS patients! I appreciate you sharing that, I would think as our bodies are so malnourished this would be helpful in getting out health and well-being back on track. It is good to hear from you Lou!

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They should be collaborating with one another, make sure you let them know you expect that. Sometimes they do talk to one another before and after appointments through a different messaging system than the portal. Always let them know that it is important to you that they touch base with your team of doctors. I ask at the end of my appointment for them to update my team if I feel that it is important that my entire team knows. Many times my specialist will look at notes prior to me following up.

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@kariulrich

@ruudolpho Cleveland Clinic has an amazing vascular clinic, I have had the opportunity to follow a patient through their appointments many years ago and I have to say they did a tremendous job in caring for this patient. I am happy to hear the Lyrica has given you some relief, and the ability to sleep at night. I do think not sleeping contributes to the pain. Have you noticed any side effects from the Lyrica? May I ask if you have lost any additional weight? I just posted several links on a response to @jmmb about pharmacogenetic testing, I will post them here also. I am sure Cleveland Clinic has this type of testing, for me it was helpful to know how my body metabolizes meds and which meds are better suited for me. It is so time intensive and not much fun going through different meds to see which ones work. This is the company that did my testing at Mayo, you do not need to have it done through Mayo, but you do need a doctor to order it: https://oneome.com also this explains what testing can help with: http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp It is rather complicated and I found it helpful to go through the individualized medicine department. I am very interested to hear what you think about medical cannabis! I have never had vitamin and minerals checked, that is very smart thing for all MALS patients! I appreciate you sharing that, I would think as our bodies are so malnourished this would be helpful in getting out health and well-being back on track. It is good to hear from you Lou!

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Right now Kari I only have the Vascular surgeon and the GI fellow. Last appointment the vascular surgeon said he would try and talk to the attending dr. in the GI dept. He also said he was not to fond of the dept. (kind of on the side). I had sent messages through the portal to ask what happened and never heard back. Last week I sent him a message and he called me the next day, so I am not sure what happened with the other messages, but I will definitely bring that up Wed. Once I get a cardiologist involved I for sure expect them to collaborate. I will discuss this with the surgeon. Do you have a primary dr. at Mayo that oversees it all? My primary is wonderful, but she is not with Mayo so it is hard for her. Thanks

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@jmmb

Hi @kariulrich and everyone else who knows a little about my history. I am hoping someone can give me some guidance/advice on how to handle, or what to do on something. I thought going to Mayo, all the different drs. were suppose to meet and discuss your individual case. Mine don’t. I love my vascular surgeon, I am not to happy with the GI dept. I have a ‘fellow’ and my vascular surgeon said I should ask for the attending dr instead. He is not happy with that dept either. Then my primary wants me to see a cardiologist. she also thought I could maybe have POTS, like you had mentioned Kari. I have the light headedness, tingling in feet and hands, and low blood pressure besides the constant fatigue. I can’t get in to the cardiologist at Mayo until end of May, so maybe my surgeon can do something on that. I don’t want to be disrespectful or hurt feelings, but I need answers and want to know why aren’t drs talking to each other. I feel like I am the one to do the research and bring the information, and then I feel like they may think I am ‘looking for something wrong’ or something. If tests are ok then I am okay, well not if I don’t feel right. Anyway, I am frustrated and just afraid when I go next week to the follow up surgeon visit for imaging from the balloon in celiac artery in Oct. I am not going to ask what I need and get any answers and leave in pain with nothing new. Believe me, I don’t want anything wrong or any procedure, but some answers or something, you know what I mean…..
Tired of being in pain, and tired all the time and feel like I find so many connecting things, but why don’t they you know. ???
Oh well, Kari I hope you are doing better on the Cymbalta. I am doing the pharmalogoical testing. My dr. just got the kit in, but since I have moved, it takes me 1 1/2 hrs to get to her, so not sure when I will get there again. She is awesome and I don’t want to loose her….
Well if anyone has any advice or has felt this way, please let me know. Thanks

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Curiosity about what other people are experiencing, and maybe connecting with others with the same kinds of situations. Always interested in medical matters.. JTB

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@lisa01

Are you aware of a FB support group called MALS PALS. It is a support group for people suffering with MALS and their loved ones. It gives a tremendous amount of informstion of individual struggles, and various treatments and specialists that treat MALS. Highly recommended!!

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My daughter has gone through two laparoscopic surgery to release celiac artery, first at Washington Medical DC (June 2013) which really helped her for almost 30 months and pain started again. Second laparoscopic surgery was performed at Cleveland clinic (Nov 2016) which helped her another 10 months and has started the same symptoms of Nausea, vomiting and losing weight.
would like to know if anyone has more information on treatment after two surgeries.
Thanks

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@lisa01

Are you aware of a FB support group called MALS PALS. It is a support group for people suffering with MALS and their loved ones. It gives a tremendous amount of informstion of individual struggles, and various treatments and specialists that treat MALS. Highly recommended!!

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@kariulrich I am so confused and upset right now I am hoping you can help me. I just got back from my surgeon appt. Thank goodness my scan was good . SMA stent wide open, and Celiac had a little narrowing, but it is fine and my numbers have been way higher. My problem/concern is I still have symptoms. I had such pain when they were doing the ultra sound. My surgeon said he doesn’t think those symptoms are coming from my arteries. He doesn’t know. He was great, spent so much time answering my questions. (broke down crying, and I know he felt bad, I felt bad for him then….) I finally had my post op notes from my first surgery in Feb. 2014. I never really knew what was done except the arteries were smashed by the diaphragm and now fixed. The surgeon at the time explained all to family. My mom had beginning dementia then and my dad just wanted to know if I was okay, same with my kids. First post op apt, I was still drugged up and don’t remember much except surgeon was really excited because it was so rare. Then second apt was right after my dad unexpectantly passed away and I was in such a fog. They told me arteries were narrowing again, I didn’t listen or do anything. My point is I would have asked so many questions, like if some of the things done could be way I have continued pain. I ask new surgeon and he said could be nerve damage, doesn’t know if he ganglions taken out, wasn’t mentioned in report. He did have to cut the diaphragm so nerves come off of that that could be damaged making one lung paralyzed. I have hard time taking deep breath a lot. GI dr. says nothing wrong. I don’t get it. I know there is visceral sensitivity but all this, nausea, bloating pain, constipation, you know the list. Does your dr. believe even though all tests are clear, your pain still comes from MALS??? I feel like I am going crazy again…No one understands what it is like except you guys. Saturday will be 4 years since my first surgery, and I have been sick and had pain every day since then.
This is what my post op said I had for procedure: dissection and freeing of celiac artery compression from left crus of the diaphragm and patch angioplasty of sma with limited endarterectomy through a thoraco-retroperitoneal approach The diagnosis says: Chronic mesenteric ischemia with extensive diaphragmatic compression of the celiac and superior mesenteric arteries and focal fibrotic stenosis mixed with atherosclerotic plaque just beyond the origin of the SMA
I have also had so many other names: chronic ischemia of celiac and sma, chronic stenosis and others.
Kari I am so confused. I know I have to go for ultrasounds every few months to check on stents. Of course if pain sooner. Well I always have pain so how do I know. Especially now since he doesn’t think it is coming from the arteries since they are open. Please tell me I am not going crazy.
Oh and he said the celiac block would come from their pain management dept. or GI, not him. I thought that was weird. And I am getting the DNA testing….
Jill

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@lisa01

Are you aware of a FB support group called MALS PALS. It is a support group for people suffering with MALS and their loved ones. It gives a tremendous amount of informstion of individual struggles, and various treatments and specialists that treat MALS. Highly recommended!!

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Hi Jill @jmmb,

I can only imagine your resilience to cope daily with ongoing pain! While we wait for @kariulrich. I encourage you to read this information about the complexities of chronic mesenteric ischemia; both links are from current resources, and I hope they will give you some insight, and reassurance:
https://www.uptodate.com/contents/chronic-mesenteric-ischemia
http://www.acc.org/latest-in-cardiology/articles/2016/12/20/07/12/role-of-endovascular-therapies-in-chronic-mesenteric-ischemia

Another incredibly informative resource is this discussion on Connect:
https://connect.mayoclinic.org/discussion/we-need-awarenesspreventionresearching-on-very-rare-condition-smas-superior-mesenteric-artery-syndro/

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@lisa01

Are you aware of a FB support group called MALS PALS. It is a support group for people suffering with MALS and their loved ones. It gives a tremendous amount of informstion of individual struggles, and various treatments and specialists that treat MALS. Highly recommended!!

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@palsan2011 I can speak from my experience, I have had two open surgeries from MALS, about 3-4 years apart. I do not regret the surgeries as they improved my quality of life tremendously for about 3 years after the surgery. Day and Night comparison with pain, eating, energy. Unfortunately the pain has returned once again for me. With that said, many people go on to be symptom free and we just do not here from them. For a group of us MALS becomes a chronic battle. I am so happy that we have each other. Some days are really good, some days are what I call pajama days. For your daughter since she did not have open surgery, there is a possibility that she needs a bypass which may help. I would recommend that she sees a vascular surgeon that has treated many MALS patients, and to discuss if she is a good candidate. There are parameters that determine an idea candidate. It is NOT an easy surgery and should not be taken lightly. Also there is chance that she may not find relief. Please ask any questions, I would be happy to answer to the best of my ability.

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@lisa01

Are you aware of a FB support group called MALS PALS. It is a support group for people suffering with MALS and their loved ones. It gives a tremendous amount of informstion of individual struggles, and various treatments and specialists that treat MALS. Highly recommended!!

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Jill, @jmmb, YOU ARE NOT going crazy…. your symptoms are very real and what you are experiencing is something I and many others before you have been through! My heart breaks because I know what you are going through… I know how it is to break down in tears in the vascular surgeon’s office. We are the chronic MALS patients, and honestly more needs to be done to support and care for patients like us. I am all over with this post, so forgive me… he is right … all celiac blocks come from the pain management group. I have found the pain management the most compassionate of all the groups I have seen. I know you are confused… this may not be of any help… but I am in the same boat. So we both need to take a step back, take a deep breathe and look at what we are dealing with one step at a time. 1. Pain, we have to get that under control. Have you had a celiac block? That is definitely something to consider, although it may take several blocks to be effective. Also, medication… that is not a permanent solution (although in some cases I think should be a permanent solution) but at least it can give you temporary relief. 2. Nutrition, this needs to be addressed also, the more pain we have the more weight we lose, malnutrition sets in and fatigue. What I have found… and I know this is not a great solution, but I drink 1 redbull (not diet) in the afternoon. The sugar and the caffeine along with the B vitamins seem to keep me from lying in bed all day. I try and eat nuts, string cheese with it to get a source of protein. 3. Sleep, are you sleeping? Another strange thing that has helped for me… because our calorie intake is so low in the middle of the night I am starving!!! So now I keep 2 sticks of string cheese by my bed to eat when I wake up with severe hunger. What is nice about cheese vs other foods is it is not hard on your teeth. I know all these suggestions sound completely off the wall, it becomes survival mode. Prior to my second surgery, all my tests came back relatively good… ultrasound, CT scan, Functional MRI did not show increased velocities. It was when they did exploratory surgery that they found a small growth of tissue in my graph, they were not convinced that this was 100 percent the cause of my pain, but they revised the graft, in addition to removing scar tissue and injecting ganglion tissue with steroids. Chronic mesenteric ischemia… damage is done. How to move forward? WE must advocate for ourselves and one another.

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@lisa01

Are you aware of a FB support group called MALS PALS. It is a support group for people suffering with MALS and their loved ones. It gives a tremendous amount of informstion of individual struggles, and various treatments and specialists that treat MALS. Highly recommended!!

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Hi Kari, @kariulrich, thank you for responding and everything you said. I really needed to hear that right now. I never did have a celiac block, but I am going to try. It’s just that if my surgeon doesn’t think my pain is from the arteries because there is flow, I get all confused. He did say there can be nerve damage. Plus we don’t know if the ganglion was removed. My surgeon now has never done an open surgery and not many MALS patients have been even seen there. He has done stents and opening of those. He sees it as plumbing, and the pipes are open. The velocities, flow, are not where they should be, but much better then they were and getting enough blood flow. My questions would be then what about the exhaustion, tingling fingers and toes things like that. He doesn’t believe that has anything to do with MALS. I am going to a cardiologist hopefully sooner than the May 17 date. Did you have the same surgeon for all your surgeries? I think what was done on my very first surgery which was very extensive, would effect pain and things today. He just wants to focus on the arteries now and go forward. I get what he is saying but I said there must have been damage done from prior to surgery and he said no because there was flow, just the sections in the arteries were blocked. That doesn’t make sense to me. That’s why I think he may not totally understand MALS. He is wonderful, takes so much time to answer my questions, but is MALs so much different then any blocked artery? I would think so. I also have a lot of scar tissue. I can’t bend to my left side It feels like a slab of cement is under my ribs. Sometimes it can really hurt. It is still hard for me to lay on my left side, 4 years later. I wonder where the stents are if that is where all the work was done and if could have seen if there was any damage like you had in a sense. I don’t know why he said there is no way of knowing if the ganglions were removed.
I like your idea of the cheese at night. I am afraid of gaining weight. I had gained 40 pounds after my surgery, but drs. believed after so many tests, and endocrinologist, that is was from stress. Dad passing, mom with dementia, sisters fighting me trying to take me to court, mom living with me and then she passed, all while going through this. I am sure that did not help. This all started about 5 months after surgery. About a year ago, I basically hit rock bottom, lost all my family except my wonderful 2 children who I wouldn’t be here right now if it weren’t for them. I started walking eating better and saying this is not going to get me, I will fight it. Problem is I don’t know what I am fighting. You know what I mean? I lost the weight. I think I never had the issue of weight loss because I always had stomach issues and my stomach always hurt, so I ate little and adjusted my whole life. They said I wasn’t typical in symptoms. I did and still do have fear of eating because I know it hurts. I feel so bad for people that can’t keep it down or on feeding tubes. Then I feel like I should be thankful, those poor souls. You and this site really have been a god send for me.
I have joined MALS PALS and MALS community. I never had facebook so just got one to join so I am not really good at navigating it and seeing messages and such. However many members have talked about a DR. Hsu in Conn. who has done wonders for many people. Many have traveled to see him. Have you or anyone reading this heard of him?
Well I am writing to much. I need to take a nap…Thank you so much Kari. Yesterday when all this was happening I knew I had to get on here for help, I couldn’t give up and think I’m crazy. Thank you to anyone that has listen (read) this long venting of sorts.
Oh my first surgeon even had a paper published on me. It has pictures and all. I could only get the abstract, but I asked my surgeon to print it for me since he had access and he did. I would think he would want to read it and he didn’t say anything. Who Knows…..

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