Mystery Solved! I have MALS! [SUPER RARE]
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- เผยแพร่เมื่อ 26 ก.ย. 2024
- Finally, the mystery is solved! I was diagnosed with a rare congenital anomaly, Median Arcuate Ligament Syndrome, or MALS. In this video, I share how I got diagnosed, how to push for answers when you're getting the run-around from doctors, and my upcoming surgery. My hope is that this will help others from going 36 years without a diagnosis. Please let me know in the comments if you found this video helpful! Thanks for watching!
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our 13 yr old son was just diagnosed with MALS today after vomiting all this life. Recently he started losing weight and the vomiting has gotten so bad. He also has Eosinophilic Esophagitis. I am beyond worried. I am grateful for your video. Thanks for sharing.
Is your son now good?
Dr. Martinez did my MALS surgery last year before he retired. I’m all better now 😊
Congratulations!
R u still good
What a loss the doc retired for the community with MALS.
I have EDS, Fibromyalgia, and POTS. I feel like I had to research them on my own. Dr.s barely know they exist.
It is truly so frustrating. 😔
Aaaargh! I have been on this roundabout forever! I was finally diagnosed with hEDS at 40. I'm still trying to figure out the flank pain I have had for 8 years! If everything the doctors have said is in my head really is in my head, then I could float in a Macy's parade. But as you surely assume, it's not.
I keep reading how rare MALS is but my daughter has it too. I'm glad you got a diagnosis. Thank you for giving your doctors name. Wishing you the best in health!
Can't wait to see your postop video! You'll do great!!
Thank you so much! I will keep you posted!
So well spoken! Exactly what I learned as a patient model at a vascular conference where we focused on NCS and MTS - the practitioner is everything! An inexperienced ultrasound tech will not get the images needed or interpret them well.
My son has MALS. Surgery June 4th with Dr Shouhed in LA. Thank you for your video. Hope you had a successful surgery and a relatively easy recovery. ❤
My recovery was brutal, but I did manage to get some relief for a few months until my Nutcracker Syndrome escalated and I needed a kidney auto-transplant. But I was still dying after all my surgeries. I was fully tube-fed, on palliative care and about to go on hospice, but then I discovered that I had systemic MCAS and was able to heal by addressing severe nervous system dysregulation and vagus nerve dysfunction that had been going on for decades. Now I'm completely healed of everything, including EDS, POTS, MCAS, Periodic Paralysis, myoclonus, Neurogenic Bladder, hypoxia, RLS, Reynaud's, chronic insomnia, panic attacks, and more. All gone. I'm living a normal life for the first time in my life. 🎉 I share my amazing progress here: instagram.com/heartsong_renewed
Hi Angie...thank you for sharing. Really hoping this is the remedy that will make you feel normal. So sorry to hear you've been plagued for so long. I'm in the Le Meow Endmyopia community and just sent you a message if you have a chance to read. Best wishes and prayers for your recovery ☺️
This surgery was to correct one of my congenital deformities, which it did, but unfortunately it can't fix my other genetic conditions. Nothing can. It's symptom management only.
I hope you surgery went extremely well. I also have MALS and it good my doctors and numerous ER visit ( vomiting blood, couldn’t eat) for them to finally find out what it was. My Celiac artery was so damaged because of the compression that I have to have surgery every year just to keep the artery in check
The surgery was a success, thank you! I share the whole experience here: th-cam.com/video/msgvEPG1ISU/w-d-xo.html Wow, surgery every year? I'm so sorry. Is there a way they can do a graft so you don't have to keep having surgery?
My daughter is getting SMAS and MALS surgery on Thursday. This video helped me figure out what could be wrong and start on the path to diagnosis. Thanks
R u symptoms free now
Omg the meditation and the breathing thing - so true!! Drives me nuts
Thanks for posting. Prayers for you and your family!
Thank you so much, Matt!
Hope you notified the other Doc about your diagnosis. Maybe it will help another patient and get him additional much needed training!
Thank you for documenting this Angie. We are going to be following your story. Wishing you the very best!
Thank you so much! ❤️ ❤️ ❤️
All the Best Angie...God bless you and your family... Keep up your positive attitude... U ll surely sail through the surgery....
Thank you!
Thanks for the informative video. I found out I might have this and will be getting an appointment soon. I’m lucky that docs who know about this reached out to me. I’m 32 and only got diagnosed a year ago with the same things. I know how you feel.
You're welcome! I hope you find answers and get relief soon.
I have lost a bunch of weight. Literally looking skeletal and anorexic. Its scary. I have been struggling for several years after a gallbladder surgery. I have been checked for so much to no avail. I just recently learned of mals after someone said my symptoms sounded like it. The more i hear about it, the more i relate to it. Unfortunatly i cant get anyone to listen. Even losing so much weight. I decided yesterday its time to change doctors and drive to another town for better care. My symptoms got alot worse this year after a sudden rib pain. Still struggling with the ribs as one keeps subluxing. And they just keep telling me its anxiety. Its not. But something definitely isnt right and i have pain after eating. Can barely eat much food at once. Nausia but no vomitting. Even have pots type symtoms. Its like everything changed the day after my gallbladder surgery and i have said this from day one. Something changed with that surgery. Idc what they tell me.
I'm so sorry you're experiencing what was my life until very recently. In fact, I was on palliative care and about to go on hospice last June. But now I'm completely healed and no longer identify with any of my diagnoses. I'm off the TPN and IV fluids, I no longer need a wheelchair or mobility aids, my port was removed, and I have a better quality of life than I've ever had. I share a lot more about it on my Instagram, instagram.com/_havenhomestead_, if you want to learn more. I'm not selling anything, just FYI. 😉 I just want more people to learn about what healed me so they can heal, too. And so many are, every single day. 😊
You got this!
Thank you! ❤️ ❤️ ❤️
@Angie Hepp, very best wishes for you and your family.
Thank you so much! ❤️
@@AngelaHepp very worst wishes for you and your family.
How are you doing now? No surgeon in Australia will touch this surgery and needs to be done by an expert and open surgery so can deal with the scar tissue and fibrosis to reduce further issues still. However i am finding it impossible to get help and meanwhile now can hardly eat and the nerve bundle irritation means stuck in flight or fight and compressed tightness now is 24/7 from chest to radiate down abdomen and into back. Feels like im stuck internally right aide body and nothing helps ease the pain. Spreading and more deep and visceral issues longer its left. My autonomic dysfunction is worse and blpod pooling in legs wtc etc. Vicious cycle. Ild love to hear how you are doing now years later and then you for sharing your story. Hope all is now going well.
I was still dying after all my surgeries (I also had a kidney auto-transplant for Nutcracker). I was on palliative care and about to go on hospice, but then I discovered that I had systemic MCAS and was able to heal by addressing severe nervous system dysregulation and vagus nerve dysfunction that had been going on for decades. Now I'm completely healed of everything, including EDS, POTS, MCAS, Periodic Paralysis, myoclonus, Neurogenic Bladder, hypoxia, RLS, Reynaud's, chronic insomnia, panic attacks, and more. All gone. I'm living a normal life for the first time in my life. 🎉 I share my amazing progress here: instagram.com/heartsong_renewed
Infinite Blessings to you on your journey. ☆♡☆
Thank you so much! ❤️
I have my surgery on Aug 18th 2021 (Chicago) I’m hoping it will work. Dr. Said 70% success rate. Never even heard of MALS till tests. Most awful pain I’ve ever felt in my life.
Did u had surgery?
I’m in the process of getting diagnosed with SMAS after having every symptom in the book of that as well as MALS. I also suffer from hypokalemic periodic paralysis though it did not come up on DNA test. Could you tell me what surgeries specifically you had and by whom? -Rachel
Open MALS surgery by Dr. Bernardo Martinez, 2019. Kidney auto-transplant for Nutcracker and SMAS by Dr. Zendejas in Salt Lake City, 2021.
omg this is crazy. the gi dr would tell me and my parents im fine and then i went to the er and ct scan was positive for mals. i need a dr that will tell me i have it and they believe its not in my head
You are naming my situation exactly
I hope you find answers and relief! ❤️ ❤️ ❤️
It’s so weird how they say it’s rare but so many have it!
Hi. What are your symptoms if you don’t mind me asking. Thanks.
Have you tried Isha practices ?
😂😂😂😂😂😂😂😂 Please research my condition before making recommendations like this. Thank you.
God bless you and your family in jesus name
@angiehepp In regards to MALS...as a child did you suffer with stomach issues? Ive heard you mention the stitch in your side that you experienced during vigorous play or exercise as a child, did your surgeon sat whether that was related to MALS?
Yes, I always had a very poor appetite as a kid/teenager. I would feel full after just a few bites and would complain of pain right below my sternum (in the exact MALS spot). I told my mom it felt like I had been punched or kicked in the gut right after I would eat. She accused me of having an eating disorder. 🤦♀️
Wait is this why I had a vascular necrosis and had to get my hips replaced?
What test shows Mals ? I am at my wits ends.... NCS left flank pain fullness ect
The main tests are what I mentioned in the video: abdomen/pelvis CT with contrast and MALS protocol and the mesenteric ultrasound with MALS protocol.
What doctor for tests that were correct did you go to?
I am boy who is 17 but
The doctor doesn't want me to have surgery
9:32
Thank you! ❤️
This is me
Do you still recommend that surgeon?
Absolutely! He opened his own practice in Kansas City now. Martinez Vascular Institute.
Do this mess with your breathing?
It did for me.
You're a wealth of knowledge! I love you hot wifey!!
I love you, too! Thank you for always standing by me through all of life's craziness. You're my rock! ❤️ I'm so thankful God made us for eachother.
You are so lucky to have a beautiful and intelligent wife. Wishing both of you an excellent new year!
Who was your MALS doctor?
Bernardo Martinez, but he's retired now.
Angie Hepp bummer thank you so much for replying 😑
Pretty face 😉
I have to ask...are you a true believer in Jesus christ and have you tried christian healing...?❤❤
Yes, I most certainly am a believer in Jesus Christ and I look forward with great hope to the perfect healing I will one day receive on the New Earth.