Median Arcuate Ligament Syndrome (MALS)

@ukmalsman @kariulrich @astaingegerdm

Thank you everyone for chiming in, with your support and suggestions.

You are all correct. It should NOT have come to this. When he was hospitalized for malnutrition and anxiety attack a few months ago, he was admitted to the ER, but not provided with food or drink, or IV fluids, or ANYTHING, and eventually he discharged himself. I WISH that I had been there, I want to scream at so many people that keep giving him this endless run around.

I appreciate the hope and advice that you are giving, but our outlook is so very grim right now, it's hard to hold out hope.

I want to impress upon you the severity of the situation we are in, and how heartbreakingly late in the game I have entered the picture. Lou is very weak and in a downward spiral. He is 6'2" and weighs 102 lbs, and continues to lose weight. We do believe there is another underlying condition that has gone untreated - as even drinking water causes him pain - but he is too weak to leave his bed, let alone his house to undergo examination or any follow up procedures.

I am trying to figure out if it's even possible to get him admitted to a hospital with IV fluids and feeding tube. BUT if we try to do this, they will immediately pull him of off of hospice care and I will be very blunt that hospice is the only thing keeping him alive right now. So I need to be absolutely SURE of our plan before taking any action.

Right now he is on a diet of:
+ 2 cups of Resource 2.0 over the course of the day (1/4 cup every hour)
+ Breakfast: 2/3 serving of oat meal with honey, butter, and 8 blueberries
+ Dinner: Chicken stock, butter, a tbsp of finely shredded chicken, and either egg drop or gluten free pasta

This only totals about 1,600 cal a day, and he really needs to be getting closer to 2000 to regain any weight. I am scrambling to read up on nutrition for him, just to get him stabilized, and I am afraid that there are things that are hurting him in the above plan, but I can't be sure.

Hospice care became a necessity because he couldn't get the pain and anxiety meds through his doctors. He has NOT had a PCP following him through this process, he has had to piece meal every appointment together by himself himself, and the Albuquerque medical facilities are absolutely horrendous.

I am home in LA for 24 hours, and return to Lou's tomorrow morning. I will review this meal plan with him and have ordered Fresubin, but it ships from the UK and will not get here until after Christmas.

Thank you again

@ukmalsman @kariulrich @astaingegerdm

Thank you everyone for chiming in, with your support and suggestions.

You are all correct. It should NOT have come to this. When he was hospitalized for malnutrition and anxiety attack a few months ago, he was admitted to the ER, but not provided with food or drink, or IV fluids, or ANYTHING, and eventually he discharged himself. I WISH that I had been there, I want to scream at so many people that keep giving him this endless run around.

I appreciate the hope and advice that you are giving, but our outlook is so very grim right now, it's hard to hold out hope.

I want to impress upon you the severity of the situation we are in, and how heartbreakingly late in the game I have entered the picture. Lou is very weak and in a downward spiral. He is 6'2" and weighs 102 lbs, and continues to lose weight. We do believe there is another underlying condition that has gone untreated - as even drinking water causes him pain - but he is too weak to leave his bed, let alone his house to undergo examination or any follow up procedures.

I am trying to figure out if it's even possible to get him admitted to a hospital with IV fluids and feeding tube. BUT if we try to do this, they will immediately pull him of off of hospice care and I will be very blunt that hospice is the only thing keeping him alive right now. So I need to be absolutely SURE of our plan before taking any action.

Right now he is on a diet of:
+ 2 cups of Resource 2.0 over the course of the day (1/4 cup every hour)
+ Breakfast: 2/3 serving of oat meal with honey, butter, and 8 blueberries
+ Dinner: Chicken stock, butter, a tbsp of finely shredded chicken, and either egg drop or gluten free pasta

This only totals about 1,600 cal a day, and he really needs to be getting closer to 2000 to regain any weight. I am scrambling to read up on nutrition for him, just to get him stabilized, and I am afraid that there are things that are hurting him in the above plan, but I can't be sure.

Hospice care became a necessity because he couldn't get the pain and anxiety meds through his doctors. He has NOT had a PCP following him through this process, he has had to piece meal every appointment together by himself himself, and the Albuquerque medical facilities are absolutely horrendous.

I am home in LA for 24 hours, and return to Lou's tomorrow morning. I will review this meal plan with him and have ordered Fresubin, but it ships from the UK and will not get here until after Christmas.

Thank you again

@kariulrich Thank you for the warm welcome and quick response, I am very touched that you are reaching our personally, this must be a lot for you to manage.

Please be patient with me, I am very new to a lot of these terms, and am playing catch up to understand what stenosis is, or how invasive a TPN might be - I will respond to those points when I have a chance to talk to Lou (he is resting now).

Lou's story is very sad. Tracking back, we determined that his MALS may have started back in 1999, and went misdiagnosed and untreated for so long. The ABQ medical system has really failed him in this regard. Over the years he has seen many internal gastro specialists, but due to health care limitations he did NOT have a Primary Care Physician that was tracking his health deterioration over time.

In 2017, my parents (his older sister) flew him to MA to be seen at Mass General, and he was officially diagnosed with MALs. After that things swung into effect quickly, but keep in mind that he had been living with MALS for almost 20 years(!!!) at this point.

+ May 24, 2017 -- First diagnosed by Dr. Said at Mass. General
+ July 13, 2017 -- Surgery done at University of New Mexico Hospital. Cancer oncologist Dr. Nir and vascular surgeon Dr Rana. - Celiac artery release and cordiozation. Partial removal of celiac nerve ganglia.
+ Aug 4, 2017 -- Follow up complication 2 weeks later, Dr, Rana. Pseudoaneurysm of splenic artery. Surgery- Splenic embolization.
+ May 15 and June 20, 2018 Nerve blocks done at Albuquerque Pain Management Clinic. Anesthesiologist Dr. Whalen.

Hi Rachel

I know this question has been asked already, but why was there a Cancer surgeon in the team when your uncle Lou had surgery July 13 2017 at New Mexico Hospital? Had they found cancer which was treated at the same time? I ask because I know some people will not talk about cancer if they have been diagnosed with it; they will hide it from friends and even family. You said you came in late to this so you may not have all the information. I suggest you have a one on one with your uncle and ask him to tell you everything or if he will allow you, go through his medical records.

@ukmalsman @kariulrich

Sorry, I meant to answer your questions about the Cancer surgeon and resent tests sooner! It is painful for Lou to talk about these thingsk about because looking back there are so many "what if's" and second guessing of everything that led him to this point. I don't want other's to suffer in the same way, so I will do my best to answer them. Please just understand that he is a bit sensitive to aggressive inquires, and I don't want him to feel that I am admonishing him for his choices or circumstances. I am putting together a write up of his medical history, and I will share it here when I have more complete information.

In answer to some of your questions, here is what I know:

> "why was there a Cancer surgeon in the team when your uncle Lou had surgery July 13 2017 at New Mexico Hospital?
Lou chose to be treated in NM by a Cancer surgeon because there are no vascular surgeons in NM, and if he went out of state he would have had to pay for the surgery out of pocket, due to his insurance. I do have access to his medical records and there was no signs of cancer. I also know that it was an open procedure and not laparoscopic.

> "What type of work up has he had since Aug 2017? Any ultrasounds, angiography such at CT or MRI??"
He had a CT scan a few months ago, and it showed that the arteries were not kinked, so there was no follow up for stents.

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Mark @ukmalsman

I will also stop oatmeal with berries tomorrow, thank you for that advice!

I can't seem to get Fresubin Jucy in the states, but my dad found that nestle makes a similar product called Boost breeze. Looking at Fresubin Jucy, the nutritional panel looks comparable. We are getting the Resource 2.0 that has no fiber, but I think we are open to trying something different since we can't really be sure if this has been working well or not.

I wish there was more time and room for experimentation, like you did on yourself.

We just ordered a case of Breeze and expedited it. My primary focus right now is to help reduce pain, and find foods that he can eat.

-----------

Thank you all, for your continued help and support. I return to NM tomorrow afternoon with more information in hand and that feels better.

--Rachel

@ukmalsman @kariulrich

Sorry, I meant to answer your questions about the Cancer surgeon and resent tests sooner! It is painful for Lou to talk about these thingsk about because looking back there are so many "what if's" and second guessing of everything that led him to this point. I don't want other's to suffer in the same way, so I will do my best to answer them. Please just understand that he is a bit sensitive to aggressive inquires, and I don't want him to feel that I am admonishing him for his choices or circumstances. I am putting together a write up of his medical history, and I will share it here when I have more complete information.

In answer to some of your questions, here is what I know:

> "why was there a Cancer surgeon in the team when your uncle Lou had surgery July 13 2017 at New Mexico Hospital?
Lou chose to be treated in NM by a Cancer surgeon because there are no vascular surgeons in NM, and if he went out of state he would have had to pay for the surgery out of pocket, due to his insurance. I do have access to his medical records and there was no signs of cancer. I also know that it was an open procedure and not laparoscopic.

> "What type of work up has he had since Aug 2017? Any ultrasounds, angiography such at CT or MRI??"
He had a CT scan a few months ago, and it showed that the arteries were not kinked, so there was no follow up for stents.

----------

Mark @ukmalsman

I will also stop oatmeal with berries tomorrow, thank you for that advice!

I can't seem to get Fresubin Jucy in the states, but my dad found that nestle makes a similar product called Boost breeze. Looking at Fresubin Jucy, the nutritional panel looks comparable. We are getting the Resource 2.0 that has no fiber, but I think we are open to trying something different since we can't really be sure if this has been working well or not.

I wish there was more time and room for experimentation, like you did on yourself.

We just ordered a case of Breeze and expedited it. My primary focus right now is to help reduce pain, and find foods that he can eat.

-----------

Thank you all, for your continued help and support. I return to NM tomorrow afternoon with more information in hand and that feels better.

--Rachel

Hi Rachel @racheldmark

As @kariulrich said share what you feels is comfortable both for you and your uncle. You wont need to talk to your uncle if you have access to his records. Something else I thought of, if your uncle has a blender at home you can increase his meal size by blending his food and turning it into soup. Blend cooked white rice, potato no skin and chicken add the chicken stock to thin down to a soup consistency. Hopefully he will be able to eat more and it will be more delicate on his digestive system.

For breakfast you could blend some boiled eggs add a little vegetable stock to thin down and spread on white bread, (most vegetable stock has zero dietary fiber.)

Mark

@ukmalsman @kariulrich

I am back in NM! To help connect the dots, I asked Lou for his Mayo Clinic user name, @ruudolpho

He is reading your emails and responses along with me, and we are both very touched with all of the information you have given us! I went grocery shopping and picked up more goodies to try. I just served Lou his first bowl of instant mashed potatoes - with butter, coconut/almond milk, and chicken stock - he liked it and he said his pain is very low! This is encouraging.

Is all fiber a big NO-NO? I just bought some baby food of pureed apples and chicken and will hold off on trying it out if it may be an issue.

--Rachel

@ukmalsman @kariulrich

I am back in NM! To help connect the dots, I asked Lou for his Mayo Clinic user name, @ruudolpho

He is reading your emails and responses along with me, and we are both very touched with all of the information you have given us! I went grocery shopping and picked up more goodies to try. I just served Lou his first bowl of instant mashed potatoes - with butter, coconut/almond milk, and chicken stock - he liked it and he said his pain is very low! This is encouraging.

Is all fiber a big NO-NO? I just bought some baby food of pureed apples and chicken and will hold off on trying it out if it may be an issue.

--Rachel