1. < Digestive Health

Constant nausea and vomiting

Posted by katelynlanz @katelynlanz, Jun 24, 2023

46 year old female, constant nausea and vomiting for 8 months. Pt. Has history of polycythemia Vera, cervical cancer ( total hysterectomy), thyroid cancer ( total thyroidectomy), hypertension. Pt. has been hospitalized multiple times over the last 8 months with no answers. Pt. has had multiple CT’s and X-rays of the stomach, as well as stomach emptying study, endoscopy, and many blood tests. Everything is “normal”. Doctors say she is an anomaly and cannot diagnose her. They have ruled out gasteroparesis, stool blockage, spreading of cancer, and food allergies. Pt. cannot keep fluids or food down, has very high and very low blood pressures, has had hallucinations, bloody noses, chest pain (usually with the vomiting), has lost 80lbs in the last 5 months, and has been in pre-renal failure many times due to the dehydration. I know there is plenty I am missing so please please please ask questions and I will answer them to the best or my ability. The Pt. is my mother who I am convinced will die unless i find someone who has seen this sort of thing can before and help find me answers. She cannot just be an anomaly with no answer’s. Someone out there has to have seen this before. Please help me.

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Mentor
Lori, Volunteer Mentor | @loribmt | Jun 24, 2023

Hello @katelynlanz Oh my goodness, your poor mother! What an awful array of symptoms with no answers and she’s certainly so young to have all this issues. How frightening for you and your family to have mum so ill.

I’m not sure where you live but your mom might benefit from a larger teaching clinic like a university hospital where they have doctors who work collaboratively with colleagues of different specialties to find a diagnosis.

I’m biased because my life was saved by the amazing doctors/nurses at Mayo Rochester. I’d really suggested seeing if your mom can get an appointment at one of the 3 Mayo campuses, in Rochester, MN. Jacksonville, Fl. Phoenix AZ.
Here’s the link to their home page to get the application started. http://mayocl.in/1mtmR63

Your mom doesn’t need a referral but it can help secure an appointment if her doctors can do the referral with pertinent information regarding her symptoms. The coordinator who takes the call will be able to guide you through the process so you know what’s needed to go forward to request an appointment.

Hopefully other members will have some suggestions for you or have had similar experiences and can offer some suggestions. You’re a wonderful daughter for taking such good care of your mom. Do you have siblings?

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1 reply
katelynlanz | @katelynlanz | Jun 24, 2023
In reply to @loribmt "Hello @katelynlanz Oh my goodness, your poor mother! What an awful array of symptoms with no..." + (show)
@loribmt

Hello @katelynlanz Oh my goodness, your poor mother! What an awful array of symptoms with no answers and she’s certainly so young to have all this issues. How frightening for you and your family to have mum so ill.

I’m not sure where you live but your mom might benefit from a larger teaching clinic like a university hospital where they have doctors who work collaboratively with colleagues of different specialties to find a diagnosis.

I’m biased because my life was saved by the amazing doctors/nurses at Mayo Rochester. I’d really suggested seeing if your mom can get an appointment at one of the 3 Mayo campuses, in Rochester, MN. Jacksonville, Fl. Phoenix AZ.
Here’s the link to their home page to get the application started. http://mayocl.in/1mtmR63

Your mom doesn’t need a referral but it can help secure an appointment if her doctors can do the referral with pertinent information regarding her symptoms. The coordinator who takes the call will be able to guide you through the process so you know what’s needed to go forward to request an appointment.

Hopefully other members will have some suggestions for you or have had similar experiences and can offer some suggestions. You’re a wonderful daughter for taking such good care of your mom. Do you have siblings?

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Thank you so much @loribmt for your kind words! My mom was admitted at the university of Minnesota hospital which is a teaching facility for 7 weeks and they did not find any answers. The did remove her gallbladder thinking that, that was the issue but it did not help any of the symptoms. I have been trying to get her into Mayo in Rochester and we do have a referral but our insurance denied the coverage for Mayo and we frankly can’t afford it without insurance. I am still trying to find a way around that. I really do appreciate your comment though!!

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2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Jun 25, 2023
In reply to @katelynlanz "Thank you so much @loribmt for your kind words! My mom was admitted at the university..." + (show)
@katelynlanz

Thank you so much @loribmt for your kind words! My mom was admitted at the university of Minnesota hospital which is a teaching facility for 7 weeks and they did not find any answers. The did remove her gallbladder thinking that, that was the issue but it did not help any of the symptoms. I have been trying to get her into Mayo in Rochester and we do have a referral but our insurance denied the coverage for Mayo and we frankly can’t afford it without insurance. I am still trying to find a way around that. I really do appreciate your comment though!!

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Good morning Katelyn. One thing I do know for sure is that your mom is immensely proud of of you. She’s able to see first hand the amazing young woman you have become with how you’re handling her illness and taking on the huge task of battling an insurance company for coverage for her.

You’re being tossed into ‘adulting’ very quickly with being your mom’s champion for finding a diagnosis in hopes of having her get healthy again. It’s positive that your mom has good health insurance and it sounds like she is getting great critical care at the U of M. But so frustrating when you live near Rochester and the insurance won’t extend to the Mayo Clinic.
My knowledge of insurance and how to arbitrate for coverage is limited so I’m not the right person for assistance there. I do have a friend who was able to get coverage for a 2nd opinion at Mayo by talking to one of the benefits experts with her insurance company. So hopefully you’ll be successful for your mom for another professional opinion.

When did the worst of these symptoms start with your mom? It’s like something is being missed but she’s certainly gone through a litany of testing and coming up short with a diagnosis. Could this be something unusual like Celiac artery compression syndrome?
Is she in pain, besides the awfulness of constant nausea and vomiting? Does she ever feel better such as after eating or does that bring on any pain or discomfort?

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 25, 2023
In reply to @katelynlanz "Thank you so much @loribmt for your kind words! My mom was admitted at the university..." + (show)
@katelynlanz

Thank you so much @loribmt for your kind words! My mom was admitted at the university of Minnesota hospital which is a teaching facility for 7 weeks and they did not find any answers. The did remove her gallbladder thinking that, that was the issue but it did not help any of the symptoms. I have been trying to get her into Mayo in Rochester and we do have a referral but our insurance denied the coverage for Mayo and we frankly can’t afford it without insurance. I am still trying to find a way around that. I really do appreciate your comment though!!

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Hi @katelynlanz,

I've been reading your posts about your mom, as well as Lori's, @loribmt, great suggestions. The only other addition to what's been said so far, is for your mom to keep a journal of eating, drinking and activity level as well as her symptoms. Perhaps she will find some correlation between the symptoms and other factors.

Just wondering, did your mom move to a new home or have any other significant events prior to the start of these symptoms? Sometimes environmental changes can affect health.

Keep trying for a Mayo referral and thank you for being such a great advocate for your mom! She must really appreciate your efforts on her behalf.

REPLY
katelynlanz | @katelynlanz | Aug 4, 2023
In reply to @loribmt "Good morning Katelyn. One thing I do know for sure is that your mom is immensely..." + (show)
@loribmt

Good morning Katelyn. One thing I do know for sure is that your mom is immensely proud of of you. She’s able to see first hand the amazing young woman you have become with how you’re handling her illness and taking on the huge task of battling an insurance company for coverage for her.

You’re being tossed into ‘adulting’ very quickly with being your mom’s champion for finding a diagnosis in hopes of having her get healthy again. It’s positive that your mom has good health insurance and it sounds like she is getting great critical care at the U of M. But so frustrating when you live near Rochester and the insurance won’t extend to the Mayo Clinic.
My knowledge of insurance and how to arbitrate for coverage is limited so I’m not the right person for assistance there. I do have a friend who was able to get coverage for a 2nd opinion at Mayo by talking to one of the benefits experts with her insurance company. So hopefully you’ll be successful for your mom for another professional opinion.

When did the worst of these symptoms start with your mom? It’s like something is being missed but she’s certainly gone through a litany of testing and coming up short with a diagnosis. Could this be something unusual like Celiac artery compression syndrome?
Is she in pain, besides the awfulness of constant nausea and vomiting? Does she ever feel better such as after eating or does that bring on any pain or discomfort?

Jump to this post

@loribmt I can’t even begin to put into words how thankful I am for you! I looked into the celiac artery compression syndrome (MALS) for days and everything lined up into place. I had to go to numerous doctors and fight for an angiogram. One doctor was finally willing to listen to me and did the angiogram…. today I got the call. My mother has MALS and they are looking for a surgeon to do surgery. There is an end in sight and my mother can stop deteriorating away, I can stop worrying every second of the day that I am going to lose her to an unknown cause. Soon enough my mothers suffering and pain will come to an end and I owe it all to you. You helped me save her life and I cannot thank you enough. Seriously from the bottom of my heart, thank you for caring enough about a stranger and her daughter to reply. I don’t know when surgery will be but I will update you afterwards to let you know how she is doing. Thank you again!
With love, Katelyn 🙂

REPLY
2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Aug 4, 2023
In reply to @katelynlanz "@loribmt I can’t even begin to put into words how thankful I am for you! I..." + (show)
@katelynlanz

@loribmt I can’t even begin to put into words how thankful I am for you! I looked into the celiac artery compression syndrome (MALS) for days and everything lined up into place. I had to go to numerous doctors and fight for an angiogram. One doctor was finally willing to listen to me and did the angiogram…. today I got the call. My mother has MALS and they are looking for a surgeon to do surgery. There is an end in sight and my mother can stop deteriorating away, I can stop worrying every second of the day that I am going to lose her to an unknown cause. Soon enough my mothers suffering and pain will come to an end and I owe it all to you. You helped me save her life and I cannot thank you enough. Seriously from the bottom of my heart, thank you for caring enough about a stranger and her daughter to reply. I don’t know when surgery will be but I will update you afterwards to let you know how she is doing. Thank you again!
With love, Katelyn 🙂

Jump to this post

Oh my goodness, Katelyn, your reply brought me to tears! I’m so grateful that your mom has a diagnosis and wow, if I helped in any way, I’m just over the moon happy to be part of her positive recovery!!
YOU are to be commended for continually being your mom’s advocate for health care. You were relentless in finding help for her and your desperation brought you to our awesome Mayo Connect forum. It does take a village. ☺️
Aw, I’m so hoping your mum gets this surgery out of the way soon and on the road to being your mom again!! I’m sure she has a renewed spark of hope too for seeing a light at the end of the dark tunnel she’s been in for too long! I’ll be sending positive vibes for speedy surgery and recovery.

This just made my day and so will an update with the good news! Love to you and your mom! 🥰🥰

REPLY
Mentor
Lori, Volunteer Mentor | @loribmt | Aug 17, 2023
In reply to @katelynlanz "@loribmt I can’t even begin to put into words how thankful I am for you! I..." + (show)
@katelynlanz

@loribmt I can’t even begin to put into words how thankful I am for you! I looked into the celiac artery compression syndrome (MALS) for days and everything lined up into place. I had to go to numerous doctors and fight for an angiogram. One doctor was finally willing to listen to me and did the angiogram…. today I got the call. My mother has MALS and they are looking for a surgeon to do surgery. There is an end in sight and my mother can stop deteriorating away, I can stop worrying every second of the day that I am going to lose her to an unknown cause. Soon enough my mothers suffering and pain will come to an end and I owe it all to you. You helped me save her life and I cannot thank you enough. Seriously from the bottom of my heart, thank you for caring enough about a stranger and her daughter to reply. I don’t know when surgery will be but I will update you afterwards to let you know how she is doing. Thank you again!
With love, Katelyn 🙂

Jump to this post

Hi Katelyn. Thinking about you and your mom this morning. Has she been able to get a date set for her surgery?

REPLY
1 reply
katelynlanz | @katelynlanz | Aug 17, 2023
In reply to @loribmt "Hi Katelyn. Thinking about you and your mom this morning. Has she been able to get..." + (show)
@loribmt

Hi Katelyn. Thinking about you and your mom this morning. Has she been able to get a date set for her surgery?

Jump to this post

Good morning @loribmt, sadly no. We’ve seen 3 different vascular surgeons and all 3 said she has MALS but it would be unethical to do the surgery seeing as practically everyone in the world has it. They don’t believe it’s the cause of the symptoms and keep referring me to the Mayo Clinic. My insurance still won’t approve Mayo even with 12 doctors referring her there. I’m not really sure what our next steps are now but I will let you know! Thank you for thinking of us!

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Aug 17, 2023
In reply to @katelynlanz "Good morning @loribmt, sadly no. We’ve seen 3 different vascular surgeons and all 3 said she..." + (show)
@katelynlanz

Good morning @loribmt, sadly no. We’ve seen 3 different vascular surgeons and all 3 said she has MALS but it would be unethical to do the surgery seeing as practically everyone in the world has it. They don’t believe it’s the cause of the symptoms and keep referring me to the Mayo Clinic. My insurance still won’t approve Mayo even with 12 doctors referring her there. I’m not really sure what our next steps are now but I will let you know! Thank you for thinking of us!

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Katelyn, I’m just speechless! Not everyone in the world has MALS and to be denied surgery when your mom has obvious issues with this is heartbreaking. That’s what’s unethical.
From my understanding the procedure to correct arcuate ligament syndrome (MALS) is minimally invasive. Or, there can be a more complex surgery if there is blockage in the celiac artery. But someone needs to take your poor mom’s condition seriously.
This is from the Cleveland Clinic
https://my.clevelandclinic.org/health/diseases/16635-median-arcuate-ligament-syndrome-mals
It’s sickening that 12 doctors have referred your mom to Mayo and yet the insurance won’t approve an appointment. It going to cost them less in the long run to have your mom be seen there and possibly get her issues corrected than to go for years with her suffering and requiring constant medical attention.
I’ve not had to do much negotiating with insurance plans but hopefully there is someone in our Connect forum who can help you win approval for a trip to Mayo. This is just so sad and disappointing on many levels.

REPLY
cnash1 | @cnash1 | Jan 5 3:19pm

My daughter had it and had surgery to correct. Happy to given you more info. If you go to the MALS foundation website there are several doctor that treat it successfully with surgery. My daughter had hers done in Tampa fl at Tampa General. Dr Christopher DuCoin. He is an absolute angel.

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