Median Arcuate Ligament Syndrome (MALS)

Posted by Kari Ulrich, Alumna Mentor @kariulrich, Dec 26, 2016

I am looking for other patients that have been diagnosed with Median Arcuate Ligament Syndrome. Although it is caused by compression of the celiac artery many people experience abdominal pain after eating, diarrhea, food avoidance. Usually the first doctors they see are GI doctors. It is a diagnosis that is made after everything else is ruled out. I am curious if anyone else has had surgery?

@kellylinn

Hello my name is Kelly and a year and a half ago I was diagnosed with a dissection of my SMA and Celiac ligament syndrome. I had bypass surgery for my SMA that took 9hrs & 47min. And this morning I am going back up to OHSU for more testing now to address my Celiac.

Jump to this post

@kellylinn nice to meet you! Let us know how your celiac testing goes! What are you having done today? Welcome to Mayo Connect it is wonderful to have you hear, great photo! I have not gotten very good at all the filter settings! Love!!!

REPLY

My name is Rachel, and I am writing on behalf of my Uncle Lou, from his home in Albuquerque, NM.

Lou has been fighting a long and difficult battle with MALS. He was finally diagnosed in 2017, after years of struggle and misdiagnosis. In 2018 he underwent the procedure to correct the pinched nerve and ligament, and remove part of the Celiac nerve ganglia. This successfully restored blood flow to his stomach, but did not help ease his pain. Over the last year, he has undergone two additional treatments of nerve blocker injections through the ABQ pain clinic.

Unfortunately none of these treatments helped and the pain has persisted, and even increased over time. He continues to suffer painfully when he eats, from what I understand is classified as severe and therapy‐resistant neuropathic pain.

Like many of you, after surgery the doctors have said that there is nothing else that they can do for him, and the ABQ medical system is very poor.

A few months ago he was briefly hospitalized. The emergency room physician who treated him told him that in her opinion his undernutrition was so severe that he had only months to live.

Currently, Lou is living at home and receiving hospice care, with in home care throughout the day. The services are extensive, and have helped improved his quality of life tremendously, and include many of the things he has been asking his doctors for and not receiving. Better pain and anxiety medications, hospital bed, wheelchair, an on call nurse and 24 hour hospice access, medical alert system, personal grooming, home cleaning services, and on going support.

He is 6'2", 73 years old, and currently weighs 102 lbs. We have him on a regimented diet of Resource 2.0 in addition to one to two small meals throughout the day, but have not been able to get him to consume more than 1,600 calories in a day.

We are very lonely with our struggles to help him, and I have found considerable comfort in reading through this forum over the last few days.

Questions:
* Are there other people out there who are struggling after unsuccessful treatment that we can connect with – even just for solidarity?
* What are your most successful meal plans for maintaining weight?
* Are you on IV fluids, and/or GJ feeding tubes? (These will be hard for us to get right now because he is on hospice, but if there is hope we would like to know)

Dear Mark (@ukmalsman),
I have been reading your posts and have found them so useful. Would you be willing to share what your meal plan looks like for the week? Already I fear I may have been overfeeding Lou sold meals, and want to switch to a liquid diet as you suggested, but I don't know where to start.
Thank you for all that you have already contributed, I am just beginning to dig in to this forum and the MALS PALS on facebook and I feel better equipped than before.

Thank you all

REPLY
@racheldmark

My name is Rachel, and I am writing on behalf of my Uncle Lou, from his home in Albuquerque, NM.

Lou has been fighting a long and difficult battle with MALS. He was finally diagnosed in 2017, after years of struggle and misdiagnosis. In 2018 he underwent the procedure to correct the pinched nerve and ligament, and remove part of the Celiac nerve ganglia. This successfully restored blood flow to his stomach, but did not help ease his pain. Over the last year, he has undergone two additional treatments of nerve blocker injections through the ABQ pain clinic.

Unfortunately none of these treatments helped and the pain has persisted, and even increased over time. He continues to suffer painfully when he eats, from what I understand is classified as severe and therapy‐resistant neuropathic pain.

Like many of you, after surgery the doctors have said that there is nothing else that they can do for him, and the ABQ medical system is very poor.

A few months ago he was briefly hospitalized. The emergency room physician who treated him told him that in her opinion his undernutrition was so severe that he had only months to live.

Currently, Lou is living at home and receiving hospice care, with in home care throughout the day. The services are extensive, and have helped improved his quality of life tremendously, and include many of the things he has been asking his doctors for and not receiving. Better pain and anxiety medications, hospital bed, wheelchair, an on call nurse and 24 hour hospice access, medical alert system, personal grooming, home cleaning services, and on going support.

He is 6'2", 73 years old, and currently weighs 102 lbs. We have him on a regimented diet of Resource 2.0 in addition to one to two small meals throughout the day, but have not been able to get him to consume more than 1,600 calories in a day.

We are very lonely with our struggles to help him, and I have found considerable comfort in reading through this forum over the last few days.

Questions:
* Are there other people out there who are struggling after unsuccessful treatment that we can connect with – even just for solidarity?
* What are your most successful meal plans for maintaining weight?
* Are you on IV fluids, and/or GJ feeding tubes? (These will be hard for us to get right now because he is on hospice, but if there is hope we would like to know)

Dear Mark (@ukmalsman),
I have been reading your posts and have found them so useful. Would you be willing to share what your meal plan looks like for the week? Already I fear I may have been overfeeding Lou sold meals, and want to switch to a liquid diet as you suggested, but I don't know where to start.
Thank you for all that you have already contributed, I am just beginning to dig in to this forum and the MALS PALS on facebook and I feel better equipped than before.

Thank you all

Jump to this post

@racheldmark welcome to our humble group, happy you are advocating on behalf of your uncle. Have they considered giving him tube feedings or TPN to help his nutrional status and help with energy? Does he have any additional diagnoses? I am trying to understand why hospice and not a more conservative approach to nutrition and pain? Small meal, liquid based that are nutrient dense such as ensure is needed if he can tolerate that. MALS should not get to this point, I wonder if there is more going on…if he has stenosis again???

REPLY
@kariulrich

@racheldmark welcome to our humble group, happy you are advocating on behalf of your uncle. Have they considered giving him tube feedings or TPN to help his nutrional status and help with energy? Does he have any additional diagnoses? I am trying to understand why hospice and not a more conservative approach to nutrition and pain? Small meal, liquid based that are nutrient dense such as ensure is needed if he can tolerate that. MALS should not get to this point, I wonder if there is more going on…if he has stenosis again???

Jump to this post

@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.

REPLY
@kariulrich

@racheldmark welcome to our humble group, happy you are advocating on behalf of your uncle. Have they considered giving him tube feedings or TPN to help his nutrional status and help with energy? Does he have any additional diagnoses? I am trying to understand why hospice and not a more conservative approach to nutrition and pain? Small meal, liquid based that are nutrient dense such as ensure is needed if he can tolerate that. MALS should not get to this point, I wonder if there is more going on…if he has stenosis again???

Jump to this post

I remember a young man with Chron’s disease who had major difficulty maintaining weight. Also, after years of not eating regularly, he seemed to lack interest in the act of eating. He received tube feeding through the night. This way he could maintain a decent nutrional status. Maybe hospice care is not aggressive enough to improve his caloric intake. Also, at 73, the uncle could still have decent years ahead. I’m 74 and have spent too many years being miserable. I’m finally ok for now, but it is true that the medical world is less aggressive with older patients. I had to fight for myself.

REPLY
@astaingegerdm

I remember a young man with Chron’s disease who had major difficulty maintaining weight. Also, after years of not eating regularly, he seemed to lack interest in the act of eating. He received tube feeding through the night. This way he could maintain a decent nutrional status. Maybe hospice care is not aggressive enough to improve his caloric intake. Also, at 73, the uncle could still have decent years ahead. I’m 74 and have spent too many years being miserable. I’m finally ok for now, but it is true that the medical world is less aggressive with older patients. I had to fight for myself.

Jump to this post

@astaingegerdm you make some very valid points. 73 seems very young and I really appreciate that you spoke up and said that the medical profession can be less aggressive with older patients. I truly believe that ageism is so ingrained in society, and needs to be addressed in the medical community. There definitely can be food adversion with our symptoms, but symptoms need to be treated aggressively when weight loss and malnutrition kick in. It can be a downward spiral quickly…hospice just does not seem right unless the patient truly understands. Homecare, palliative care yes…but hospice seems like the last resort.

REPLY
@racheldmark

@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.

Jump to this post

@racheldmark I apologize about using medical terms and acronyms! Thank you for the reminder to be cognizant of medical jargon. Stenosis is the blockage of the artery, so usually when the ligament is released the artery opens and the stenosis or blockage improves. To know if this indeed happened a ultrasound of the artery (preferably intraopertive) needs to be done. When you have had MALS for so many years such as your uncle, the artery can remain kinked despite the ligament being released. For me I had a bypass of my celiac artery after the ligament was released. Some patients have stents placed…it all depends on the situation. Would your uncle consider getting a second opinion? I know it is difficult when he is so weak. I worry there maybe an underlying vascular problem that needs to be addressed. What type of work up has he had since Aug 2017? Any ultrasounds, angiography such at CT or MRI?? May I ask why a cancer surgeon was involved in the surgery? I apologize for so many questions. You and your uncle are in our thoughts, please know you are not alone.

Liked by Rachel

REPLY
@racheldmark

My name is Rachel, and I am writing on behalf of my Uncle Lou, from his home in Albuquerque, NM.

Lou has been fighting a long and difficult battle with MALS. He was finally diagnosed in 2017, after years of struggle and misdiagnosis. In 2018 he underwent the procedure to correct the pinched nerve and ligament, and remove part of the Celiac nerve ganglia. This successfully restored blood flow to his stomach, but did not help ease his pain. Over the last year, he has undergone two additional treatments of nerve blocker injections through the ABQ pain clinic.

Unfortunately none of these treatments helped and the pain has persisted, and even increased over time. He continues to suffer painfully when he eats, from what I understand is classified as severe and therapy‐resistant neuropathic pain.

Like many of you, after surgery the doctors have said that there is nothing else that they can do for him, and the ABQ medical system is very poor.

A few months ago he was briefly hospitalized. The emergency room physician who treated him told him that in her opinion his undernutrition was so severe that he had only months to live.

Currently, Lou is living at home and receiving hospice care, with in home care throughout the day. The services are extensive, and have helped improved his quality of life tremendously, and include many of the things he has been asking his doctors for and not receiving. Better pain and anxiety medications, hospital bed, wheelchair, an on call nurse and 24 hour hospice access, medical alert system, personal grooming, home cleaning services, and on going support.

He is 6'2", 73 years old, and currently weighs 102 lbs. We have him on a regimented diet of Resource 2.0 in addition to one to two small meals throughout the day, but have not been able to get him to consume more than 1,600 calories in a day.

We are very lonely with our struggles to help him, and I have found considerable comfort in reading through this forum over the last few days.

Questions:
* Are there other people out there who are struggling after unsuccessful treatment that we can connect with – even just for solidarity?
* What are your most successful meal plans for maintaining weight?
* Are you on IV fluids, and/or GJ feeding tubes? (These will be hard for us to get right now because he is on hospice, but if there is hope we would like to know)

Dear Mark (@ukmalsman),
I have been reading your posts and have found them so useful. Would you be willing to share what your meal plan looks like for the week? Already I fear I may have been overfeeding Lou sold meals, and want to switch to a liquid diet as you suggested, but I don't know where to start.
Thank you for all that you have already contributed, I am just beginning to dig in to this forum and the MALS PALS on facebook and I feel better equipped than before.

Thank you all

Jump to this post

Hi @racheldmark

Thank you for the kind words and a big welcome to the Mayo website. Your uncle's story is so sad, my heart goes out to him. He has been through a lot and it seems he has a great support system, namely you. I agree with @kariulrich in that hospice care seems a little drastic, although a hospice does provide palliative care for the seriously ill as well as the dying most think of a hospice as the final step; this may have a negative affect on your uncle and his mental well-being. It must be a strain on your uncle Lou just knowing he has been put in hospice care something he doesn't need as dealing with MALs is stressful enough. Please don't get me wrong I think those that work in the hospice provide a wonderful and much needed service, I agree he should have palliative care, the question is whether it should be with a PCP and nursing team or with a hospice? Maybe he does need an aggressive approach, but to start with lets find something he can tolerate. I'm not sure if you read my post on food for MALs sufferers on the 4th November; the way I solved my problem was to understand food.

The general rule is anything white is alright stay away from Red, Green, Brown. It has been ingrained on society that healthy food is good for you especially when sick. Well it's the total opposite for MALs sufferers, healthy food will generally cause a great deal of pain. What a MALs sufferer needs is something that is very easy to digest. Your uncle does not want to eat food which causes the digestive system to work hard as more blood is needed in the digestive system; this is where I believe the pain comes from. It could be the arteries causing the pain or the years of lowered blood supply to the digestive system which in turn has damaged the organs on a level we have not detected yet. I suffered months of trial and error to work out what works for me.

For meals I can tolerate eating once every few days white food only
Potatoes mashed with butter, minced chicken, flaked fish, pasta, white soft grain rice, lactose free milk and eggs. I also find some kids items easy to digest, chicken fingers, chicken bite, fish bites; processed reformed food I find very easy to digest. The minced chicken can be lightly seasoned. Start by feeding him the same meal for the first few weeks, something like mashed potato with kids breaded chicken sticks. That's what I ate over and over for weeks. If he gets no pain then introduce another item. He may find he will introduce something, but the pain doesn't start until the next day. Don't be disheartened take off the last added item and feed him what hasn't caused pain for a week before introducing another item. It is trial and error, just don't rush it. I'm down to eating a meal every other day but it tend to stick to chicken fingers and potato. It's repetitive, but I stopped the weight loss even managing to put a few pounds on.

He can not eat any green vegetables with his meal and definitely no salad. No brown bread, bran flakes or anything fibrous, certainly no beef, lamb or any other red meat and No fruit. If these are on his list then stop them; it took a few weeks for me to feel a difference and get them out of my system. Brown foods are usually fibrous and as you know we eat fiber as roughage as it is hard to digest. Green fruit and veg contain chlorophyll which we can't digest; both food groups make our digestive system work hard.

I no longer eat out in restaurants and was never one for fast food takeaway. Read the label of everything he eats and make sure non of the no foods are in it. Basically you need to treat your uncle like someone who has a nut allergy; hopefully that will make a difference. Start him very slowly maybe 1 breakfast bowl size meal every 4 days, along with drinks that increase daily calories like Fortisip juice or Fresubin shakes. Because I don't eat fruit or veg and lack the necessary vitamins and mineral intake I was prescribed high dose multivitamin & mineral complex, he will need this too.

I am not sure what pain relief they have prescribed your uncle, but if it is oral he may want to switch. I was on MST slow release morphine tablets which worked to a certain point. Then the pain specialist changed me to Buprenorphine Trandsermal Patch which actually work far better than tablets. To control his pain better he needs to make the change in food habits and try the patches, together they have made my life so much better. Like your uncle I was missed diagnosed for many many years; my pain started when I was in my teens. I was plagued with periods of excruciating pain lasing for a few days to a few weeks. 10 years ago the pain came back and didn't go after a few weeks. Instead it got worse to the point where like your uncle it became food related so I stopped eating losing about 30lbs in a few weeks. I only got my diagnosis of MALs a few months ago and it is even less well known over here in the UK.

It looks like you have been a tower of strength for your uncle, I commend your willingness to help and be there for him he will most certainly appreciate everything you have done for him. I have someone who does something similar, in fact it was he who put me onto this website. He doesn't now just how much I appreciate all he does for me as I go through this horrendous ailment. Tell Lou he is very welcome to come and chat, he will find nothing but warm hearts and kindness in this group I know I have.

If you try him out on the anything white diet please let us know how he gets on. It will be helpful for others too to know if it works for him. Just remember it takes a few weeks to get the bad stuff out of his system so tell him to persevere.
All the best!

Mark

IMG_3557

REPLY

@ukmalsman great words of wisdom! Thank you!

Liked by Rachel

REPLY
@ukmalsman

Hi @racheldmark

Thank you for the kind words and a big welcome to the Mayo website. Your uncle's story is so sad, my heart goes out to him. He has been through a lot and it seems he has a great support system, namely you. I agree with @kariulrich in that hospice care seems a little drastic, although a hospice does provide palliative care for the seriously ill as well as the dying most think of a hospice as the final step; this may have a negative affect on your uncle and his mental well-being. It must be a strain on your uncle Lou just knowing he has been put in hospice care something he doesn't need as dealing with MALs is stressful enough. Please don't get me wrong I think those that work in the hospice provide a wonderful and much needed service, I agree he should have palliative care, the question is whether it should be with a PCP and nursing team or with a hospice? Maybe he does need an aggressive approach, but to start with lets find something he can tolerate. I'm not sure if you read my post on food for MALs sufferers on the 4th November; the way I solved my problem was to understand food.

The general rule is anything white is alright stay away from Red, Green, Brown. It has been ingrained on society that healthy food is good for you especially when sick. Well it's the total opposite for MALs sufferers, healthy food will generally cause a great deal of pain. What a MALs sufferer needs is something that is very easy to digest. Your uncle does not want to eat food which causes the digestive system to work hard as more blood is needed in the digestive system; this is where I believe the pain comes from. It could be the arteries causing the pain or the years of lowered blood supply to the digestive system which in turn has damaged the organs on a level we have not detected yet. I suffered months of trial and error to work out what works for me.

For meals I can tolerate eating once every few days white food only
Potatoes mashed with butter, minced chicken, flaked fish, pasta, white soft grain rice, lactose free milk and eggs. I also find some kids items easy to digest, chicken fingers, chicken bite, fish bites; processed reformed food I find very easy to digest. The minced chicken can be lightly seasoned. Start by feeding him the same meal for the first few weeks, something like mashed potato with kids breaded chicken sticks. That's what I ate over and over for weeks. If he gets no pain then introduce another item. He may find he will introduce something, but the pain doesn't start until the next day. Don't be disheartened take off the last added item and feed him what hasn't caused pain for a week before introducing another item. It is trial and error, just don't rush it. I'm down to eating a meal every other day but it tend to stick to chicken fingers and potato. It's repetitive, but I stopped the weight loss even managing to put a few pounds on.

He can not eat any green vegetables with his meal and definitely no salad. No brown bread, bran flakes or anything fibrous, certainly no beef, lamb or any other red meat and No fruit. If these are on his list then stop them; it took a few weeks for me to feel a difference and get them out of my system. Brown foods are usually fibrous and as you know we eat fiber as roughage as it is hard to digest. Green fruit and veg contain chlorophyll which we can't digest; both food groups make our digestive system work hard.

I no longer eat out in restaurants and was never one for fast food takeaway. Read the label of everything he eats and make sure non of the no foods are in it. Basically you need to treat your uncle like someone who has a nut allergy; hopefully that will make a difference. Start him very slowly maybe 1 breakfast bowl size meal every 4 days, along with drinks that increase daily calories like Fortisip juice or Fresubin shakes. Because I don't eat fruit or veg and lack the necessary vitamins and mineral intake I was prescribed high dose multivitamin & mineral complex, he will need this too.

I am not sure what pain relief they have prescribed your uncle, but if it is oral he may want to switch. I was on MST slow release morphine tablets which worked to a certain point. Then the pain specialist changed me to Buprenorphine Trandsermal Patch which actually work far better than tablets. To control his pain better he needs to make the change in food habits and try the patches, together they have made my life so much better. Like your uncle I was missed diagnosed for many many years; my pain started when I was in my teens. I was plagued with periods of excruciating pain lasing for a few days to a few weeks. 10 years ago the pain came back and didn't go after a few weeks. Instead it got worse to the point where like your uncle it became food related so I stopped eating losing about 30lbs in a few weeks. I only got my diagnosis of MALs a few months ago and it is even less well known over here in the UK.

It looks like you have been a tower of strength for your uncle, I commend your willingness to help and be there for him he will most certainly appreciate everything you have done for him. I have someone who does something similar, in fact it was he who put me onto this website. He doesn't now just how much I appreciate all he does for me as I go through this horrendous ailment. Tell Lou he is very welcome to come and chat, he will find nothing but warm hearts and kindness in this group I know I have.

If you try him out on the anything white diet please let us know how he gets on. It will be helpful for others too to know if it works for him. Just remember it takes a few weeks to get the bad stuff out of his system so tell him to persevere.
All the best!

Mark

Jump to this post

@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

REPLY
@racheldmark

@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

Jump to this post

Your plan to keep him on hospice to try to get him stronger seems reasonable. People go on and off hospice often. It’s goal may be to help the dying but if you can get him the nutrition and support to get him stronger so you can get him treatment, then they will take him off once you seek treatment. Don’t feel bad about doing that. At this point it sounds like you don’t know exactly what is causing some of his symptoms. Yournot trying to deceive but your immediate goal is his care so hospice sounds reasonable until and if you know more and he can do more. Just saying use the resources you have available until you reach the next step.

Liked by Rachel

REPLY
@racheldmark

@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

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Hi Rachel @racheldmark

Thanks for giving us clearer picture of his condition. Your uncle Lou is really in bad shape, I agree with @annief and yourself the hospice looks like it is keeping him alive, focusing on where he is is not important right now. The diet he is on maybe causing the pain, mainly the oatmeal and blueberries both are on the no list. Oats have soluble fiber in it that our small intestines find hard to digest we don't produce the enzyme to break it down. Oats are probably the worst thing on his menu, they made my life hell. It is because they stay in your system for a long time. People eat oats as they slowly release energy over the day and the fiber aids in digestion. You don't want to put anything in his digestive system that isn't easily digested.

For breakfast – white bread toasted with honey, pancakes or waffles made from refined white flour or yogurt without the fruit.
Dinner – pasta, noodles, mashed potato or soft white rice and I would mince the chicken, chicken stock.
dessert – custard, plain sponge pudding.

Right now you need to keep anything that is hard to digest out of his diet. I know the Resource 2.0 helps increase his calorie count but it contains fiber. Drastic steps need to be taken so I would change from Resource 2.0 to Resource Energy which contains no fiber but has less protein and calories.

Fresubin is great but make sure you order the fresubin Jucy, however if you change to Resource Energy which has no fiber you don't need the Fresubin.

When I did my research I came across this on the Mayo site
https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/low-fiber-diet/art-20048511
Although I can tolerate a little fiber in liquid form your uncle Lou needs to be on a zero fiber diet, anything hard to digest or non digestible needs to be off the menu. It is hard for us to get out of the habit of eating healthy, with MALs you really have to change your mindset, the primary goal is ease of digestion and not to aid digestion.

Remember anything white is alright.

If your uncle Lou is not on a high mineral and vitamin complex he will need to start taking them. They make a great deal of difference on how he will feel. I stopped taking mine for a week and I felt so lousy, brain fog increased and I was so lethargic I could barely move around.

Any questions feel free to ask.

Mark

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@racheldmark

@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.

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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.

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@ukmalsman

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.

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@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

REPLY
@racheldmark

@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

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Rachel…please only share what you are comfortable with….please. We are here to support and privacy and confidentiality is first and foremost. It is absolutely fine to say you rather not share…I just want you to know that. No pressure. This is difficult for you too, caregiver wellness is so important. Please know we are here for both of you. Hugs

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