Post-MALS surgery

Posted by ruudolpho @ruudolpho, Sep 22, 2017

I am 3 months post MALS surgery. I would like to hear from anyone who has had the MALS surgery but has not felt any improvement.
I continue to eat very little as the pain and discomfort and exhaustion kick in by 3 or 4 PM. in the afternoon and I can no longer eat for the rest of the day. I manage to consume about 1600-1800 calories and 50 grams of protein a day.
It is very difficult to sleep or fall asleep at bedtime, (10 PM.) I take Lyrica which is supposed to calm the inflamed nerves, also Tylenol. These drugs don’t seem to help. I understand the surgery has about a 50% success rate.
I’m 71 years old, 6 foot, one and I weigh 114 pounds. I’m very weak and can not be up for more than 15 minutes or less. I think the weakness is from my low body weight and from the need to recover from the open surgery.
Are there any published materials, books or medical journal articles or patient histories available to purchase?
I would greatly welcome any comments or shared experiences from other patients. Lou D’Amico

Yes, meds take longer to help. I am so glad to hear you also take cymbalta! It is always a bit frightening starting a new medication. One thing is I have not spontaneously cried in 2 days, so I figure that is a good sign! I was crying at everything, so I am hoping this will help for the depression and part of the postprandial pain. With CFS you get a lot of joint pain correct? I have joint pain from EDS and I really don’t pay much attention to it, it always present but gets acute when you sublux a joint. Did the Cymbalta give you a bit more energy? If i could change only 1 symptom it would be the fatigue. The pain is close to second, but the fatigue is what keep me in bed. I need to learn more about the fodmap diet, it seems so confusing. I am sure it would help with my digestive system, but I love the holidays and the food! I may not be able to eat a lot, but to me it is pain worthy! Let me know if you try the diet, I would be willing to try it after the holidays LOL!

REPLY

Adding this link to fodmap diet, think this breaks it down in easier steps in case I get brave and try it https://www.healthline.com/nutrition/low-fodmap-diet#section1

REPLY
@kariulrich

Adding this link to fodmap diet, think this breaks it down in easier steps in case I get brave and try it https://www.healthline.com/nutrition/low-fodmap-diet#section1

Jump to this post

Hi @kariulrich, I am glad that the Cymbalta seems to be helping. Yes I get/got a lot of joint pain. I guess it did help.I have so many other issues, like you, I just deal with it. And YES the fatigue is the worst to me also. And when you are tired I think it magnifies everything. I’m not sure if it helped with the fatigue, it was years ago. I wonder if my body is immune to it now, that’s why I am thinking about the testing. Bupropion is another antidepressant that I started taking more recently. I read that it helps with fatigue and energy so I asked my dr. and he said I could try. I think it may have helped. Then there was all my family stress, father passing, caring for my mom with dementia and 2 sisters who wouldn’t do anything, but try to take me to court saying I took money…even when we showed all bank statements. I digress…sorry, but I asked to increase because I was feeling depressed. It did help, but stress got even worse, had stents in and then my mom passed.
Have you ever tried Modafinil? It is used for narcolepsy, and night shift sleep disorder. I can’t go without it. I am still exhausted but if I don’t take it, I can’t get out of bed. You should ask about that. It is very expensive, but insurance usually covers it with a prior authorization. Medicare covers it , but it is $45, but I don’t care, I need it!!!!!
I am not going to start the fodmap diet until after holidays as well. My son has stomach issues and he has food allergies and now they said candida, so he has to do gluten free, no yeast, sugar and no fruit for 2 weeks, then introduce I at a time. I did that a few years ago, but it didn’t help me. I have no idea how he is going to do that. It was so hard and he is in college and busy. I wonder about going to an allergist. Have you ever done that?
Well good luck and thanks for the link.

REPLY
@colleenyoung

Hi @ruudolpho, Welcome to Connect.
You’ll find an active discussion with fellow Connect members talking about MALS here: https://connect.mayoclinic.org/discussion/median-arcuate-ligament-syndrome-mals/ Kari has shared many resources there that may interest you.

I’m sorry to hear that you’ve experience little to no improvement since surgery. I’m tagging fellow MALS members to see if they have surgery experiences, tips about sleeping and reference articles to share with you. @kariulrich @jmmb @coffeelatte @worriedmom18 @carolina58 @azbluebird and @artistgma

Jump to this post

Hi I recently had a CT scan and they told me it looked like I had MALS. I can’t find who to talk to her where to talk to and the mayo clinic groups every time I search MLS it says there’s no groups or discussions about it. I found this on Google. Where do you recommend I go to get more information from people who have dealt with this?

REPLY
@kindel

Hi I recently had a CT scan and they told me it looked like I had MALS. I can’t find who to talk to her where to talk to and the mayo clinic groups every time I search MLS it says there’s no groups or discussions about it. I found this on Google. Where do you recommend I go to get more information from people who have dealt with this?

Jump to this post

Hi @kindel, welcome to Connect. I'm glad you found this discussion about MALS. Sorry that it was more difficult to find than it should've been. I've added search keywords so that others don't have the same issue. Thanks for making it easier for others.

Let's get you connected to other members talking about MALS. Please meet @kariulrich @jmmb @ruudolpho who are talking in this thread.

Kindel, I also invite you to introduce yourself to the group in this active discussion:
– Median Arcuate Ligament Syndrome (MALS) https://connect.mayoclinic.org/discussion/median-arcuate-ligament-syndrome-mals/

REPLY
@kindel

Hi I recently had a CT scan and they told me it looked like I had MALS. I can’t find who to talk to her where to talk to and the mayo clinic groups every time I search MLS it says there’s no groups or discussions about it. I found this on Google. Where do you recommend I go to get more information from people who have dealt with this?

Jump to this post

@kindel Welcome!! I know navigating our MALS group can be difficult, but I am so happy we have connected! I have MALS, and been through two surgeries, several celiac blocks. It is a condition I have lived with for many years. Although each of us is different, there are many common symptoms and problems we experience and we are more than happy to offer our advice. Since you are new to the diagnosis I think it is important to know many posts are from people who have a chronic MALS condition, however their are many successes that we don't often hear about. How are you doing? Can you share a little bit more about your experience, and how you came about finally being diagnosed? Please ask any questions you may have, we will do our best to answer, or find resources for you. Kari

Liked by jmmb

REPLY
@kindel

Hi I recently had a CT scan and they told me it looked like I had MALS. I can’t find who to talk to her where to talk to and the mayo clinic groups every time I search MLS it says there’s no groups or discussions about it. I found this on Google. Where do you recommend I go to get more information from people who have dealt with this?

Jump to this post

Hello @kindel and welcome. This is a great place. I learned so much here. Kari is amazing. She has so much knowledge, and unfortunately so much experience. She has helped me a great deal. Do you mind sharing more of your symptoms and how you were diagnosed? Just the CT scan? That is how I was first diagnosed. It was an accident. I always had stomach issues. Told I had IBS and ulcers. One night the pain was so bad I went to er just for some pain meds or something. It was bad. They insisted on doing a ct scan. Good thing. They are like do you know your arteries are narrowed? I was like no, are they suppose to be? Next thing I know I am seeing a vascular surgeon, both celiac and SMA arteries were basically compressed almost 100%. It was different in the fact that the sma was involved. Usually it is just the celiac with mals. That is why my surgeon was surprised that it was the diaphragm crushing the arteries. He said my case was very rare. Everyone is different. A year or so later I had stents put in and then I had a balloon in the celiac. My celiac is narrowing again, but my sma has opened more. I don't know how but it does that. So we are holding off and see where I am at in 3 months. Many people however, can have a surgery and be done with it. Like I said everyone is different. Good luck! You will find a lot of helpful info on here! Jill

REPLY
@jmmb

Hello @kindel and welcome. This is a great place. I learned so much here. Kari is amazing. She has so much knowledge, and unfortunately so much experience. She has helped me a great deal. Do you mind sharing more of your symptoms and how you were diagnosed? Just the CT scan? That is how I was first diagnosed. It was an accident. I always had stomach issues. Told I had IBS and ulcers. One night the pain was so bad I went to er just for some pain meds or something. It was bad. They insisted on doing a ct scan. Good thing. They are like do you know your arteries are narrowed? I was like no, are they suppose to be? Next thing I know I am seeing a vascular surgeon, both celiac and SMA arteries were basically compressed almost 100%. It was different in the fact that the sma was involved. Usually it is just the celiac with mals. That is why my surgeon was surprised that it was the diaphragm crushing the arteries. He said my case was very rare. Everyone is different. A year or so later I had stents put in and then I had a balloon in the celiac. My celiac is narrowing again, but my sma has opened more. I don't know how but it does that. So we are holding off and see where I am at in 3 months. Many people however, can have a surgery and be done with it. Like I said everyone is different. Good luck! You will find a lot of helpful info on here! Jill

Jump to this post

Jill, I forget that you have additional arteries involved… you would think I would remember that by now! LOL…. it seems I am hearing more and more of others who have more than the celiac involvement. Did your doctors believe that the SMA involvement was due to increased pressure from the celiac? How are you doing today? I hope you enjoying the week thus far!

Liked by jmmb

REPLY
@kariulrich

Jill, I forget that you have additional arteries involved… you would think I would remember that by now! LOL…. it seems I am hearing more and more of others who have more than the celiac involvement. Did your doctors believe that the SMA involvement was due to increased pressure from the celiac? How are you doing today? I hope you enjoying the week thus far!

Jump to this post

Hi @kariulrich , I have been meaning to pm you for so long. Things have been crazy, of course with health stuff, not good stuff…haha. Diagnosed with Dysautonomia, but not sure exactly what. My allergist/immunologist is amazing. He thought mcas, and pots. did the tilt table test and according to mayo cardiologist, who I liked, said I passed. It was the worst. I felt horrible, almost passed out. My heart rate and blood pressure were all over the place. I don't understand. He did still say I have a POTS over lap, what ever that mean. My allergist said regardless this is not right. Been doing blood work and so much research that I have put the MALS on hold. I did go to my surgeon for the ultra sound follow up and the celiac is narrowing again. It is like 334 or something. I have had it much higher, but I noticed pain in my chest. My SMA however opened more. It is weird, it does that sometimes. It can be almost 50% and then it will open, and other times it was way over 70%velocity. Nothing with me is ever really 'normal'. We decided we would check again in 3 months. I have to much going on to see what is wrong with me with everything else. I am on iv hydration at home. 2 bags a day. It is starting to help now, it has been almost 2 months, but a rough start. Then upped to 2 bags. I just kind of retreat inward when it gets like this, nothing good to report you know. Got to get past this stuff and at least get a name to it. Dr. says it is dysautonomia, but that is so broad. I go to a great neurologist but Nov. 30. My dr is calling to see if he can get me in earlier. He says I have a lot of stuff going on. Oh and I have a golf ball size bump under my ribs, where I have a lot of scar tissue. It came out of know where and it is sore and hurts. I am going Thursday for ultra sound. I don't know what that could be. If it could be related to scar tissue, or maybe a hernia.
So I hope you are doing well. Loved your last article, but I know you saw my comment and we communicated a bit then. And great news for Robin!! I hope this is the last surgery for her and it stays well. I will stay in touch, and please do the same. I am bad lately. Well have a great week!!
Jil

REPLY
@jmmb

Hi @kariulrich , I have been meaning to pm you for so long. Things have been crazy, of course with health stuff, not good stuff…haha. Diagnosed with Dysautonomia, but not sure exactly what. My allergist/immunologist is amazing. He thought mcas, and pots. did the tilt table test and according to mayo cardiologist, who I liked, said I passed. It was the worst. I felt horrible, almost passed out. My heart rate and blood pressure were all over the place. I don't understand. He did still say I have a POTS over lap, what ever that mean. My allergist said regardless this is not right. Been doing blood work and so much research that I have put the MALS on hold. I did go to my surgeon for the ultra sound follow up and the celiac is narrowing again. It is like 334 or something. I have had it much higher, but I noticed pain in my chest. My SMA however opened more. It is weird, it does that sometimes. It can be almost 50% and then it will open, and other times it was way over 70%velocity. Nothing with me is ever really 'normal'. We decided we would check again in 3 months. I have to much going on to see what is wrong with me with everything else. I am on iv hydration at home. 2 bags a day. It is starting to help now, it has been almost 2 months, but a rough start. Then upped to 2 bags. I just kind of retreat inward when it gets like this, nothing good to report you know. Got to get past this stuff and at least get a name to it. Dr. says it is dysautonomia, but that is so broad. I go to a great neurologist but Nov. 30. My dr is calling to see if he can get me in earlier. He says I have a lot of stuff going on. Oh and I have a golf ball size bump under my ribs, where I have a lot of scar tissue. It came out of know where and it is sore and hurts. I am going Thursday for ultra sound. I don't know what that could be. If it could be related to scar tissue, or maybe a hernia.
So I hope you are doing well. Loved your last article, but I know you saw my comment and we communicated a bit then. And great news for Robin!! I hope this is the last surgery for her and it stays well. I will stay in touch, and please do the same. I am bad lately. Well have a great week!!
Jil

Jump to this post

Oh my goodness Jill!! I was passed the tilt test also, however I do have POTS and like you my BP was insanely high and pulse was all over also and I felt horrific with the tilt table, I passed because I did not pass out… I wonder about the validity. My hypertension doctor said definitely POTS. It seems so many have dysautonomia and MALS! I am sorry you are feeling so horrible, home hydration….OH MY! Let me know if the hydration helps. I was part of a study decades ago, and the researcher back then knew I had POTS, she told me don't be afraid of salt, it will be your friend for life. I will say I can tell when I am dehydrated because the POTS becomes unbearable. I am soooo excited for Robin, let keep our fingers crossed that the stent works! Jill I am so happy you post here, you are an awesome resource and a great support. Sending you gentle hugs.

Liked by jmmb

REPLY
@kariulrich

Oh my goodness Jill!! I was passed the tilt test also, however I do have POTS and like you my BP was insanely high and pulse was all over also and I felt horrific with the tilt table, I passed because I did not pass out… I wonder about the validity. My hypertension doctor said definitely POTS. It seems so many have dysautonomia and MALS! I am sorry you are feeling so horrible, home hydration….OH MY! Let me know if the hydration helps. I was part of a study decades ago, and the researcher back then knew I had POTS, she told me don't be afraid of salt, it will be your friend for life. I will say I can tell when I am dehydrated because the POTS becomes unbearable. I am soooo excited for Robin, let keep our fingers crossed that the stent works! Jill I am so happy you post here, you are an awesome resource and a great support. Sending you gentle hugs.

Jump to this post

Thank you Kari. I didn't know you had POTS also. I just get so confused and like what is wrong with me!!! Sending you hugs as well. Oh yea, the hydration is starting to help. Hopefully it will continue!!

REPLY

5 years ago I was diagnosed with median accurate ligament disease now diagnosed also with gastroparsesis. Is it common to get these two together?
Anyone else have these two diseases?

REPLY

looking for help, my son's best friend has been diagnosed with MALS…..apparently has suffered for months and months prior to diagnoses, he is a 38 yr old male….lives by himself and takes tons of meds to suppress pain, more to sleep, and some for depression, this young man grew up in my home, from 1st grade and cub scouts through adult hood, My son has asked me to intervene, as all this young man's friends feel he is abusing the medication…he has an appointment at the mayo clinic Oct. 1st …..but in the mean time I want to help? what can I tell him to eat? or Drink….after reading all the information I'm afraid to make a mistake…he is 5'10" and weighs about 115lbs…..I'm so concerned….please help me, help him….

REPLY
@secondmom

looking for help, my son's best friend has been diagnosed with MALS…..apparently has suffered for months and months prior to diagnoses, he is a 38 yr old male….lives by himself and takes tons of meds to suppress pain, more to sleep, and some for depression, this young man grew up in my home, from 1st grade and cub scouts through adult hood, My son has asked me to intervene, as all this young man's friends feel he is abusing the medication…he has an appointment at the mayo clinic Oct. 1st …..but in the mean time I want to help? what can I tell him to eat? or Drink….after reading all the information I'm afraid to make a mistake…he is 5'10" and weighs about 115lbs…..I'm so concerned….please help me, help him….

Jump to this post

@secondmom – what misery! Know the pain. It is best to eat SMALL frequent meals. Maybe try Ensure?

REPLY

thanks for the advise ….been reading for hours….no one talks about coping with pain……thank you! appreciate the help

REPLY
Please login or register to post a reply.