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

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.

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@jmmb

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.

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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

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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!!

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@jmmb

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!!

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@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!

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@jmmb

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!!

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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.

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@jmmb

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!!

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hi @kariulrich, well my computer is working now, thank God, I need it. I really think it is so important and helpful to talk to otherw with the same things going on and understand what it is like to live this everyday. Also I totally agree that even with the stenosis fixed, damage has been done. I feel my stomach is just so messed up I am just going to have to deal with it,……. So I tried writing and I had a question for you. What is pharmacogenetic testing? I never heard of it. I know you have mentioned some of your meds before, but did any help you? My GI dr. said she wouldn’t give me anything since I am taking similar meds already. I take the pantropazole everyday, but other stuff is as needed for nausea. I have meds for my chronic fatigue that I have been on for years. I wonder if I am ‘immune’ to them now and this testing may help???
As far as the low fodmap, that is interesting. It is a diet so I wonder if the testing is to see which foods to avoid. I haven’t started yet because I have to do it 100% and it is difficult with checking ingredients in everything and so on. Plus I do feel some relief since my procedure.
Well I hope you get back some answers from your testing. I’ll be interested to hear what they have to say. I will keep my fingers crossed for you!

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@jmmb

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!!

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I have my appointment on Thursday, I will know a lot more than and can share with you my results, what they mean etc. @kanaazpereira do you know of any videos or information on Pharmocogenic testing? We need to have something explaining what it is.

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Hi @jmmb,

Pharmacogenomics, or pharmacogenetics is the study of how your genes affect your body’s response to medications – it can help your doctor determine the best medication for you.
Here’s some more information from Mayo Clinic’s Center for Individualized Medicine: http://mayoresearch.mayo.edu/mayo/research/center-for-individualized-medicine/drug-gene-testing.asp

You may also wish to view these videos:
http://medprofvideos.mayoclinic.org/videos/pharmacogenomics-right-drug-right-dose-right-time?_ga=2.173922019.1154568119.1508540887-2033052444.1499398509
The National Human Genome Research Institute, https://www.genome.gov/health/ has some great educational materials and resources about genomics, individualized medicine, and to assist you in making a decision about pursuing this type of health care.

I hope this helps; let us know if you have any more questions, @jmmb.

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@kanaazpereira

Hi @jmmb,

Pharmacogenomics, or pharmacogenetics is the study of how your genes affect your body’s response to medications – it can help your doctor determine the best medication for you.
Here’s some more information from Mayo Clinic’s Center for Individualized Medicine: http://mayoresearch.mayo.edu/mayo/research/center-for-individualized-medicine/drug-gene-testing.asp

You may also wish to view these videos:
http://medprofvideos.mayoclinic.org/videos/pharmacogenomics-right-drug-right-dose-right-time?_ga=2.173922019.1154568119.1508540887-2033052444.1499398509
The National Human Genome Research Institute, https://www.genome.gov/health/ has some great educational materials and resources about genomics, individualized medicine, and to assist you in making a decision about pursuing this type of health care.

I hope this helps; let us know if you have any more questions, @jmmb.

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Thank you Kanaaz!!

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@kanaazpereira

Hi @jmmb,

Pharmacogenomics, or pharmacogenetics is the study of how your genes affect your body’s response to medications – it can help your doctor determine the best medication for you.
Here’s some more information from Mayo Clinic’s Center for Individualized Medicine: http://mayoresearch.mayo.edu/mayo/research/center-for-individualized-medicine/drug-gene-testing.asp

You may also wish to view these videos:
http://medprofvideos.mayoclinic.org/videos/pharmacogenomics-right-drug-right-dose-right-time?_ga=2.173922019.1154568119.1508540887-2033052444.1499398509
The National Human Genome Research Institute, https://www.genome.gov/health/ has some great educational materials and resources about genomics, individualized medicine, and to assist you in making a decision about pursuing this type of health care.

I hope this helps; let us know if you have any more questions, @jmmb.

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@kanaazpereira thank you so much for the info. How do you go about getting this done? I guess I should watch all the videos first then ask…. : ) This is really great information. And thanks again Kari for sharing and letting me know about this. Good luck tomorrow.. I am just so grateful for this site!

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Hi @jmmb,

I’d be happy to give you some information about pharmacogenomic testing at Mayo Clinic. If you are interested in being seen, you or your doctor can request an evaluation. You must also be able to travel to one of the three Mayo Clinic locations in Rochester, Minnesota; Jacksonville, Florida; or Scottsdale, Arizona.
You can call 507-538-3270 8 a.m. to 5 p.m., Central time, Monday through Friday; you can also submit this Contact Form for appointments or questions:
https://www.mayoclinic.org/forms/us-resident-appointment?_ga=2.239983555.1154568119.1508540887-2033052444.1499398509
The Center for Individualized Medicine (CIM) webpage has some great information:
http://mayoresearch.mayo.edu/mayo/research/center-for-individualized-medicine/requesting-an-appointment.asp

REPLY
@kanaazpereira

Hi @jmmb,

I’d be happy to give you some information about pharmacogenomic testing at Mayo Clinic. If you are interested in being seen, you or your doctor can request an evaluation. You must also be able to travel to one of the three Mayo Clinic locations in Rochester, Minnesota; Jacksonville, Florida; or Scottsdale, Arizona.
You can call 507-538-3270 8 a.m. to 5 p.m., Central time, Monday through Friday; you can also submit this Contact Form for appointments or questions:
https://www.mayoclinic.org/forms/us-resident-appointment?_ga=2.239983555.1154568119.1508540887-2033052444.1499398509
The Center for Individualized Medicine (CIM) webpage has some great information:
http://mayoresearch.mayo.edu/mayo/research/center-for-individualized-medicine/requesting-an-appointment.asp

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@kanaazpereira , thank you so much for all the info. I will be looking at this info and let you know if I have any questions. I really appreciate the info. This really looks like something I would like to do. Thanks again!

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@kariulrich I’ve been thinking about you. I hope everything went well on your appt. Thursday. If you feel like sharing I am always here. Don’t know how much info I can give you since you have always been giving me great info……but I can listen and learn : )

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@jmmb Thank you for thinking about me. My appointments went very well. I first met with the pharmacist in the Individualized Medicine department. He went over my test results and found out I am a slow metabolizer with some medications. We went through what medications would work best with my genetics, and what was nice is that I had a follow up appointment with my primary immediately after. We made some med changes, and I am hoping it will help decrease some of the pain I have and help with situational depression. I am starting on Cymbalta, a low dose. Right now it is making me very sleepy, and have a bit of nausea, so I decided to take it at night. I go back in a few weeks and we will increase the dose. I have noticed a bit of a positive change already. I just need to get through these few weeks of side effects, it always takes time for your body to get use to a medication! No way to fast forward through those yucky days! How are you doing? Is your pain being managed since the angiogram?

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@kariulrich

@jmmb Thank you for thinking about me. My appointments went very well. I first met with the pharmacist in the Individualized Medicine department. He went over my test results and found out I am a slow metabolizer with some medications. We went through what medications would work best with my genetics, and what was nice is that I had a follow up appointment with my primary immediately after. We made some med changes, and I am hoping it will help decrease some of the pain I have and help with situational depression. I am starting on Cymbalta, a low dose. Right now it is making me very sleepy, and have a bit of nausea, so I decided to take it at night. I go back in a few weeks and we will increase the dose. I have noticed a bit of a positive change already. I just need to get through these few weeks of side effects, it always takes time for your body to get use to a medication! No way to fast forward through those yucky days! How are you doing? Is your pain being managed since the angiogram?

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@kariulrich thanks for getting back to me. I take Cymbalta. I was given that years ago for the CFS it helps with the fibromyalgia, I take it in the morning. I think I did take it at night and then changed for some reasons, so long ago can’t remember. I know those first weeks aren’t the best, so good luck. I hope you get some relief. This MALs can lead to depression, being sick all the time….
Anyway, I have been feeling a little better since the procedure. Don’t know about doing the fodmap diet. So restricted and hard. So a slow metabolizer of meds, does that mean that take longer to help? Well stay positive and keep me posted…

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