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

@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….

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@secondmom it is so hard to watch out kids, no matter how old, or extended family, to suffer. Do you think he is abusing the medication? I know for me, most medication didn't touch the pain, but there were meds that helped the nausea if he has that. Promethazine and Zofran help. Also there is a 'bracelet' band called reliefband. I personally haven't used it, but many have and love it. You just can't wear it all the time or it won't be effective. You can get that on Amazon. East very small meals, and slowly. Sometimes bringing your knees up to your chest help as well. I know it can be different for everyone. There is also another great support group called MALS PALS, it is a Face Book closed group. There is a lot of good info on there as well. Good luck.

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@jmmb

@secondmom it is so hard to watch out kids, no matter how old, or extended family, to suffer. Do you think he is abusing the medication? I know for me, most medication didn't touch the pain, but there were meds that helped the nausea if he has that. Promethazine and Zofran help. Also there is a 'bracelet' band called reliefband. I personally haven't used it, but many have and love it. You just can't wear it all the time or it won't be effective. You can get that on Amazon. East very small meals, and slowly. Sometimes bringing your knees up to your chest help as well. I know it can be different for everyone. There is also another great support group called MALS PALS, it is a Face Book closed group. There is a lot of good info on there as well. Good luck.

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Thank you….I feel much less helpless the more I learn….can I ask, is the bracelet for nausea or pain? And do people with MALS hold jobs? My advice to him is to try to go in the office for an hour or so…..to bring some kind of normalcy to his life…but not knowing the full extent of his pain and nausea,not sure if that’s the right advise…he says he can’t sleep…my thought is getting control of his life might help him sleep…what do you think?

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Well everyone is different. I had pain for so long that I was used to it. I was told I have IBS. I would always try to watch what I eat, usually didn't go out and eat, stuff like that. I couldn't take the pain one night and decided to go to er just for some pain meds and they wouldn't give without ct scan and they said my arteries were narrowed I need to see vascular surgeon. I was so naïve to MALS. Never heard of it, didn't know anything about it. Surgeon said had to get surgery right away both SMA and celiac were occluded. Didn't really know MALS because usually only the celiac artery. Mine was so bad the diaphragm pushed on both arteries and made a mess. I did work up until the surgery, but I think I have had it all my life and was getting worse. Some people do work, it just depends. I also have chronic mesenteric stenosis, another words they keep narrowing. I had big open surgery in 2014 and wow, it was way more than I ever expected. Then 2015 had stents put in each artery. Should of had a bypass but I was physically to weak. Then Oct. 2016 I had a balloon in celiac artery and just had another scan and celiac is narrowing again. So for me I think it is a life long thing. Some people get it done and then they are fine. Key is to see if there is compression and nerve involvement!!

The relief band is for nausea. Nothing really helped me for pain. I would think the most he can get his mind off of this and any type of normalcy would help him, but again everyone is different.
Sorry I don't know if this is any help. It may be helpful for him to join one of the support groups online.

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@jmmb

Well everyone is different. I had pain for so long that I was used to it. I was told I have IBS. I would always try to watch what I eat, usually didn't go out and eat, stuff like that. I couldn't take the pain one night and decided to go to er just for some pain meds and they wouldn't give without ct scan and they said my arteries were narrowed I need to see vascular surgeon. I was so naïve to MALS. Never heard of it, didn't know anything about it. Surgeon said had to get surgery right away both SMA and celiac were occluded. Didn't really know MALS because usually only the celiac artery. Mine was so bad the diaphragm pushed on both arteries and made a mess. I did work up until the surgery, but I think I have had it all my life and was getting worse. Some people do work, it just depends. I also have chronic mesenteric stenosis, another words they keep narrowing. I had big open surgery in 2014 and wow, it was way more than I ever expected. Then 2015 had stents put in each artery. Should of had a bypass but I was physically to weak. Then Oct. 2016 I had a balloon in celiac artery and just had another scan and celiac is narrowing again. So for me I think it is a life long thing. Some people get it done and then they are fine. Key is to see if there is compression and nerve involvement!!

The relief band is for nausea. Nothing really helped me for pain. I would think the most he can get his mind off of this and any type of normalcy would help him, but again everyone is different.
Sorry I don't know if this is any help. It may be helpful for him to join one of the support groups online.

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God, you’ll never know how helpful you are. Thank you for taking your time…I have suggested the Facebook support group..and positive steps forward …I’m driving him to Mayo for his appointment in MN. We’re in Chicago..but not til 10/1/ 18 … in the meantime giving him every piece of knowledge I can get my hands on. Amazing what he doesn’t know…never heard about eating small meals and slowly …that seems to be first and foremost with all I have read. The diagnosis fairly resent 3 or so months but still…Fear can cause some to freeze…I feel compelled to help…I talked to him about overmedicating… he said he isn’t…but his Dr just prescribed a medication called Amitriptyline 50 mg….I looked it up…side effects outrageous….he hasn’t picked it up…Dr said it will help with pain…I told him what you said, about pain meds…scarey “….

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@secondmom

God, you’ll never know how helpful you are. Thank you for taking your time…I have suggested the Facebook support group..and positive steps forward …I’m driving him to Mayo for his appointment in MN. We’re in Chicago..but not til 10/1/ 18 … in the meantime giving him every piece of knowledge I can get my hands on. Amazing what he doesn’t know…never heard about eating small meals and slowly …that seems to be first and foremost with all I have read. The diagnosis fairly resent 3 or so months but still…Fear can cause some to freeze…I feel compelled to help…I talked to him about overmedicating… he said he isn’t…but his Dr just prescribed a medication called Amitriptyline 50 mg….I looked it up…side effects outrageous….he hasn’t picked it up…Dr said it will help with pain…I told him what you said, about pain meds…scarey “….

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Well I am glad I can help. Amitriptyline is often used to help with sleep. My son has bad migraines and difficulty falling asleep. He was given amitriptyline but he said it didn't do anything for him. My husband took it to help him for sleep. Don't tell him the side effects cause he might start imagining it….I don't think it is that bad. Well good luck and let me know if you have any questions.

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Hi! My now 16 year old daughter had MALS surgery 15 months ago. Seemed to show some improvement but now she is in pain again. Not sure what to do. So frustrating! We happened to run into the surgeon a while a back and mentioned the pain to her but she did not offer any advice. Do we go back to surgeon or pediatric gastro doctor? I am just not sure that in my local area that either are really experts in this. Even my personal gastro doctor acted as though MALS did not exist. My daughter is getting is getting increasingly frustrated and depressed. Thanks!

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@stephcaggiano

Hi! My now 16 year old daughter had MALS surgery 15 months ago. Seemed to show some improvement but now she is in pain again. Not sure what to do. So frustrating! We happened to run into the surgeon a while a back and mentioned the pain to her but she did not offer any advice. Do we go back to surgeon or pediatric gastro doctor? I am just not sure that in my local area that either are really experts in this. Even my personal gastro doctor acted as though MALS did not exist. My daughter is getting is getting increasingly frustrated and depressed. Thanks!

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@stephcaggiano – did your daughter have a follow up CT angio to see if celiac artery is patent?

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She had a follow up something????? I don't think it was a CT but an ultrasound? They were looking at the velocity in the artery. It was improved but still not normal rate. Now I just found a support group and they are suggesting it could be nerve issue now and not vascular. I am going to go to GI next week to see if we get new CT scan. They also suggested a block to test to see whether nerve issue or not?

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@stephcaggiano

She had a follow up something????? I don't think it was a CT but an ultrasound? They were looking at the velocity in the artery. It was improved but still not normal rate. Now I just found a support group and they are suggesting it could be nerve issue now and not vascular. I am going to go to GI next week to see if we get new CT scan. They also suggested a block to test to see whether nerve issue or not?

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@stephcaggiano – her symptoms might be from still lower velocity of blood flow. A specific CT angio would be very helpful. Pain could of course also be nerve pain. At surgery nerve ganglia are removed- but, there still could be nerve pain.

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@astaingegerdm

@stephcaggiano – her symptoms might be from still lower velocity of blood flow. A specific CT angio would be very helpful. Pain could of course also be nerve pain. At surgery nerve ganglia are removed- but, there still could be nerve pain.

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Thanks for your help! Are the nerve ganglia always removed?

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@stephcaggiano

Thanks for your help! Are the nerve ganglia always removed?

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@stephcaggiano – I am not sure, but my surgeon told me he was doing it.

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