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Post-MALS surgery
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
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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!
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.
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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1 ReactionThank you Kanaaz!!
@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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1 ReactionHi @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
@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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1 Reaction@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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1 Reaction@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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2 Reactions@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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