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Dec 7, 2018 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

Hey everyone,

This is a new topic of conversation for me, has anyone tried Ketamine infusion treatment for chronic nerve pain reduction?

A friend of mine had amazing results with depression treatment so I thought I would look into it. I just contacted this local clinic and will let you know what I find out. Reading through the Infusion Clinic of Albuquerque's website has extensive documentation on recent research that looks very promising: infusionclinicabq.com/providers

Thanks,
–Rachel

Dec 7, 2018 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

@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

Dec 7, 2018 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

@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

Dec 6, 2018 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

@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

Dec 4, 2018 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

@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.

Dec 4, 2018 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

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