Patient Reacts to Grey's Anatomy S15 E5 MALS Diagnosis
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- Опубликовано: 4 сен 2024
- Today I react to the Grey's Anatomy MALS Episode (S15 E5). I have MALS (also known as median arcuate ligament syndrome or celiac artery compression syndrome), and I talk about my experiences and how well I think the show represents that. I am a big fan of Grey's Anatomy, and I want to thank the writers, producers, actors, and everyone else who works on the show for bringing this rare illness into the spotlight!
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Gallbladder Removal Story: • Gallbladder Removal Story
My POTS Story: • My POTS Diagnosis Story
MALS Explained: • MALS and Celiac Artery...
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My pain definitely came in that fast. 1-3 bites of food would have me collapsed in the floor unable to move or speak due to the pain. As far as the red sunken in eyes that is realistic for some of us MALS patients that became severely malnourished secondary to our MALS.
How they respond with a quick 20 min lap surgery there in the hospital is not a reality. Even if individuals choose lap they need to see a surgeon that specializes in MALS after a CTA confirms compression of the CA secondary to the MAL from a low sitting diaphragm. I think they did a great job up until that point though. Also, most of us need the nerves addressed so would have good from them to talk about the celiac plexus and nerves that become damaged from the compression.
I’m in the middle of being tested for MALS- I literally cried watching this video…I’d never seen this episode of G.A. They hit the mail on the head 100%!
My MALS is always presents in my lower stomach. Always. Never under the diaphragm. I’m getting robotic MALS surgery this Thursday. So yes it absolutely presents in different areas of the stomach.
How are you doing now that you have had the surgery?
@@AlexiHolford Hi and thanks for asking. It’s taking longer than I expected to recover from surgery. In 3 days, it’ll be 2 weeks post-op and I’m in some kind of pain all day everyday. It seems to be a combination of the surgery pain, gas, constipation (pain meds) and my body getting used to digesting food in a new way. I’ve not been able to eat very much yet because my stomach hurts every time I eat something. I’m sure it’s all super normal. My follow up appointment is not for another 2 weeks.
@@danakrupicka641- I’m so sorry you continue to have to endure this constant pain. I hope your condition improves. I wish you all the best.
@@AlexiHolford Thank You! 🙏♥️
@danakrupicka641 hi was just wanting to ask if u feel any better from ur last comment. I might have mals and also feel pain in my lower gastric area.
Our daughter Hannah has been through a major health battle for over 16 mths now. We paid thousands of dollars to have her seen at the Mayo and thankfully had a Dr listen to us about MALS. Which after an ultrasound and CT it was clear this is what she is suffering from. She has been bullied by the medical field and made to feel miserable for something that is completely out of her control. Thankfully we are going to see a surgeon in OKC next week. Praying she can help us.
Have u operated?
She did thankfully have her successful open release MALS surgery in Houston TX in February. The state of OKLAHOMA would not allow the surgeon there to care for Hannah because she is 15
@@theleakefamily5520 congratulations dear for successful surgery.
I think now she is symptoms free.
@@RT-gg7zs From MALS symptoms yes thank God but the neglect her health received these past few years left her with some other health issues that are thankfully being followed well by another doctor.
@@theleakefamily5520 I also diagnosed with MALS.I feel severe pain after eating.my doctor told surgery does not work always.
Thank you Alyssa for making these information videos.. I am also affected by MALS and in Italy we are thousands of years back in the past, we cannot even find good doctors that can make a proper diagnosys or surgery… I hope to find some more information on the facebook page you suggested. Thanks again🌸
Hi Francesca, I am so glad you found these videos helpful, and I hope you are now on the road to feeling so much better! Thank you for watching! - 💜 Alyssa
Dear @@AlyssaLayne I feel less lonely right now, and I found lot of people who are ready to share their experience and are willing to help ..thank you again ❤
I agree with you. Getting a diagnosis is THE BEST! Maybe you should react to The Resident MALS case. 🤔
I think that would be a fun one, as I recall I was a lot more critical of The Resident episode than I was of the Grey's
I told them I had this!!!!! I just got diagnosed today 😢😢😢😢 this episode helped so much
I’ve had stomach pain for 18yrs (I’m 37) I’ve been to multiple Doctors and GI Doctors, CT scans with contrast, ultrasounds, colonoscopy, endoscopy (2), and they can’t find anything wrong. My pain is different, if I don’t eat my left side kills me. If I’m too active, it kills me. I have to eat every 2-3hrs (full meals) If I’m really active and stay out all day. I can’t lose weight because of this. I can’t eat a banana and yogurt for breakfast and be fine till lunch. I literally gag trying to consume the food I need in order for my stomach not to hurt. SMH I’m so miserable
Another voice to the list. It took me a year and a half to get diagnosed. I had an injury that caused a lot of damage to my abdominal wall and MALS. I was also told for a year that it was panic, anxiety, psychosomatic, random normal GI issues. I had one doctor tell me I was playing a victim, I've never done anything with my life, and I should see a psychiatrist. I was also ready to end my life. I called the suicide hotline 15 times between December 2021 and December 2022. I was in so much pain I would howl on the floor of my bedroom like a dying animal. I started doing breathing exercises to strengthen my diaphragm, and they helped...but only because I wasn't getting treated, and it still took a long time and hurt badly.
Eventually I had a CT angiography and a Vascular ultrasound that showed an 85% and 90% stenosis around my celiac artery, that was a year later. I feel all your pain, and hope for recovery for all of you.
How messed up was it that the doctor said “should I call Psych?”
It is so sad, and it is really representative of what happens to a lot of MALS patients, they are diagnosed as having an eating disorder, and once that happens, it seems to become even more difficult for them to get a MALS diagnosis. - 💜 Alyssa
I have MALS , I had surgery with Dr Hsu in Connecticut , he addresses the nerves and compression
I had my most recent surgery with Dr. Bilchik in May. He addresses both, but unlike Dr. Hsu, he tries to leave some of the nerves behind. This is to try and mitigate some of the symptoms of removing the entire nerve ganglion (like dumping syndrome). I am happy with the results so far, and I am happy that so many people get relief from MALS with Dr. Hsu! I hope you are doing well and continue to do so!
Alyssa Layne he does leave some nerves behind 💞 he removes only the damaged and inflamed ones , and the outer layer of the ganglion not the whole ganglion , 💞 I think people get the wrong idea about him , he’s such a caring compassionate doctor , I’m glad ur doing well 💞God bless you , recovery is rough .
My granddaughter had her surgery with the same physician. He is thought of highly.
@Andy & Debbie, He is very well respected, just not the best fit for me at the time! I hope your granddaughter is doing well and has recovered beautifully. Thank you so much for watching and for commenting!! 💜 - Alyssa
What do you think now?
I’ve had stomach pain for going on 15 years I’ve seen several drs been to GI drs I’ve had hysterectomy because they thought that might be the cause of my pain. I been to the ER several times because the pain was so intense. I’ve lost teeth because I throw up so much acid from not eating because of the pain. I’ve had so many test and been giving so many medications that never worked and had so many side affects. I woke up the other morning and couldn’t take it anymore I called my GI dr just praying that maybe this time she could do something to help me I can’t keep going like this. She ran more blood work ordered more test. I when home and couldn’t sleep because of the pain I was watching Gray’s anatomy when this episode came on I stopped it and woke up my husband crying this is what I have. I researched the rest of the night and morning which lead me to this video. Everything you are saying feels like me saying it. This last dr app I didn’t even put makeup on so the dr could see the dark circles under my eyes from not sleeping. I begged her to please help me. I’m call her Monday morning to ask her about MALS.
How did it go? 🫣
@@stiggitystack2367 not Mals still no answers
Great video. Thank you for making it. My brother is suffering with MALS. His insurance will not pay for the surgery out of state because the vascular surgeon in his state will not give the referral needed.
Thank you for watching! I am so sorry to hear about your brother. Fighting with insurance can be just as much of a battle as fighting to be diagnosed and treated. I hope and pray that there will be a solution for him soon and that he will get to experience life 2.0 in the very near future.
I really believe my son has this. He’s 11 and I also cried when they told her they have no more tests and the pain she has. No one will help him!!! He’s in constant pain and it’s been going on for two and a half years.
My 8 year old has it to more than likely. Its been diagnosed as cyclic vomiting but he always has pain in same spot. Getting him tested since can be herditary
Hello, I diagnosed the same disease in China, is there a patient group? Or do you have someone who is well treated in Thailand or Canada? Thank you
1st thing is that if a doctor at a hospital wants to discharge you then you can’t fight it. I’ve tried at multiple hospitals. The only time I was able to stay was when I cardiology group happened to have a doctor on staff and I begged that doctor to help me. But otherwise I have been kicked out too many times in really horrible physical conditions
Hi Super terrific, I totally understand. I have been there myself a few times too. It can be really heartbreaking to be told to leave when you still feel like you need help. - 💜Alyssa
nice to meet you. I am Japanese. Whether after eating or not, I felt nausea, heartburn, and a dull ache, and I couldn't sleep well. At times I felt nauseous and anemic and had to squat or lie down. I don't know if it's related, but I fainted once due to abdominal pain. Burning sensation under left rib. I had occasional pain under my left breast. Even though I was breathing, it felt like I was starved of oxygen.
I was recently diagnosed with MALS. I heard that during exhalation, there is almost no blood flow and the blood vessels are almost occluded. I'm scheduled for surgery next time. Various tests were performed at the first hospital, but no abnormalities were found. Like you, I was disappointed at the hospital because I was told it was a mental illness. The symptoms were very similar to those of pancreatic cancer, so at the second hospital I went to the pancreatic outpatient clinic and had a contrast-enhanced CT scan, which luckily discovered MALS. It seems that only a doctor who knows about this disease can understand. It seems that many people go undiagnosed, and in my case I was lucky that the cause was discovered soon after the onset of symptoms. I hope that awareness will spread in the medical field so that more people can be diagnosed with this disease as soon as possible.
I love your Mickey Mouse shirt! I haven’t watch Grey’s in years, I can’t believe how much catching up I need to do. Wonderful video!!
Thank you so much! I picked it up at Target. I am quite a bit behind on Grey's as well, but I could not pass up talking about this episode. Thank you for watching!!
Im on the journey too i had a er/urgent care doc agree to do a cta scan just on a whim and it was clear as day 50% blocked. I will probably be starting the other tests also.
The Grey EDS episode always makes me cry too
It never ceases to surprise me at what gets me emotional - especially when it comes to things related to my health! - 💜 Alyssa
@@AlyssaLayne same!!!! Also whenever a parent and young adult child are super close and either of them die I’m sobbing. My biggest fear is losing my mom and having to survive without her and my biggest regret is causing her so much pain having to watch me almost die over and over. So those *always* make us cry lol and she always gets misty when a mom is yelling at a doctor telling them that their kid isn’t faking and they’re really sick and they won’t leave until they find an answer. That one reeeeeally gets her cause (as I know you know) that was us for years
My mom and I are the same way. And as soon as one of us gets emotional, the other one starts crying as well, which makes watching medial dramas difficult for us lol. I will say, it does get easier to to advocate for yourself as you get older - particularly when you have such an excellent advocate to pattern yourself off of (and it sounds like you have an amazing advocate in your mother)! - 💜 Alyssa
I cannot stop crying. I was very fortunate that my gastroenterologist was aggressive in finding an answer. CT scan showed it right away (with barium AND contrast). I am nervous about being pushed to have a long open cut down my stomach. Hoping it’s the lap. Some patients say it didn’t help at all or that the pain is worse. I’m starting to freak out.
I've had both the lap and the open surgery, and I love all of my scars, including the one that is the full length of my abdomen. I got about 16 months of relief from my MALS pain from the lap surgery before I relapsed. I am now 2 years out from my open surgery, and I am doing great. But that is just my experience; I know of plenty of people who have gotten full relief from lap surgeries. I think if you are concerned, I would bring those up with your GI or with your surgeon and talk through your options with those who know your specific situation the best! Let me know how you are doing and when your surgery is! Lots of love and hugs and the best of luck! - 💜 Alyssa
@@AlyssaLayne Thank you for responding!! I met the surgeon yesterday. He was very thorough with details. My Doppler was not clear enough, as the technician should have asked for help. The doctor says he can clearly see MALS anyway without a retake....but he is doing an angiogram. The artery in my stomach has been increasingly painful. I’m hoping he finds what is wrong there as well. It’s nearly as bad as the MALS sometimes. It feels tough and hard. I can’t wait to move forward and feel better. I’m happy you are doing very well! Thank you again. ❤️
I am so glad your surgeon was helpful and understanding. I've never had an angiogram, but I have had a venogram. I imagine they feel similar, but you will have to let us know how it goes. I hope you find your full answer soon! Life 2.0 is wonderful, and I can't wait for you to get to experience it too! Many hugs - 💜 Alyssa
I've had colonoscopies, endoscopies, ct scans, told I'm a morphine junkie which gives me a headache. I don't know what food is going to trigger my pain, vomiting or diarrhea. Im afraid to eat right now. My gastroenterologist i know he thinks im crazy or a hypochondriac.
Cutie, thank you for your info. I 'm going through that phase right now, doctors ordering all sort of test to figure out what is causing the pain in my abdominal area. I told them that I truly believe it is MALS, cause I have all the symptoms. I have two more tests to do before I see a surgeon; doppler test/endoscopy. I just hope this surgeon is experienced on this type of issue.
I am so glad you found the info useful! I have always found that bringing research on the specific tests and diagnosis can help persuade a resistant doctor into at least looking into more rare possibilities, so you might consider that if you are concerned the surgeon you are seeing is unfamiliar with MALS. I hope you find answers soon and get full relief from your symptoms! - 💜 Alyssa
There have been some suicide cases in the POTS community
Unfortunately that is true, hopefully support and treatment will continue to improve so that we can help all the members of the chronic illness community! - 💜 Alyssa
Waiting for diagnosis. Getting a CT Scan next week....
I never eat before a Dr visit because of the pain and discomfort it caused. I can't sit in a car or in a Drs office for very long, edpecially if I eat. The pain has been horrible the last 3 years. Numerous specialists....changing primary.
Multiple upper and lower GI scopes, etc. Now I'm being directed to a psychologists. I'm married. I have to kids. Been out of work for 18 months. Definitely lost my management position, so like half my pay, if I'm even allowed back. I worked at the same big box retailer since 2002. As the years went by, my abdominal pain became increasingly crippling until I could not even complete a full shift. If I didn't on sick leave I would have been let go due to the increase in abscences.
*My eyes are red and blue around the outside. My attacks h as pprn immediately, at the end if eating, or about 20 to 30 minutes. Pain right in the same spot as yours, but flank pain and back pain, too. This has been going on for years....
I am so sorry to hear that you have been suffering for so long. Hopefully you will get your diagnosis soon. I can relate to not being able to do anything if I ate. It was always a struggle between knowing my body needed fuel and knowing the pain it would cause me. I also know how drastically our pain and disability can affect our loved ones. Luckily, I don't have any dependents, but I could easily see the emotional toll it took on my immediate family. I am praying that get both answers and relief soon so you can experience life 2.0. It is also interesting to hear about your eyes; it's not something I've encountered before. Thank you for watching and for commenting. Lots of hugs 💜 - Alyssa
lol "that wraps up"..
Hi. My wife and I suspect that she is suffering from MALS but her Doctor is as useful as a chocolate kettle and wont investigate it further. I am sourcing other help for her.
Unfortunately, that is not a terribly uncommon experience. I went through several doctors myself before anyone would even test for it. My best piece of advice would be to join the MALS Pals Facebook group. Once you are admitted to the group, there is a document with a list of doctors and surgeons who are familiar with MALS as well as their location, so you can find someone reasonably close to you who at least knows what they are looking for. The reality seems to be that most people have to travel away from their homes to find doctors who will test for and treat MALS. I hope your wife gets answers and relief very soon! Thanks for watching 💜 - Alyssa
@Toms Jose. Cardiologists are often good places to find doctors who are willing to run the diagnostic tests for MALS, but due to the rarity of the condition, it stills seems to be very hit or miss for any given cardiologist's experience with MALS and their willingness to test for it. I do think they are a great place to start having the conversation for sure! 💜 - Alyssa
@Toms Jose It is true that some cardiovascular specialists are more familiar with MALS than cardiologists, but because of the rarity of this condition, it often comes down to the individual knowledge and experience of the individual doctor as to whether or not they feel comfortable evaluating a patient for MALS. And while the compression itself is not dangerous, some of the side effects can have major impacts on patients and their overall health. Due to the pain, many people struggle to eat adequate amounts of food and this can lead to dangerous malnutrition. I also think across the board that doctors hold conflicting opinions about the effectiveness of open/lap surgery. If your doctor has suggested that open is the best option for you, then that is great! In my own personal experience, open surgery was the best course of action for me, but I know people who have received full relief from a lap procedure. That tends to be a personal decision that many other factors about a patient's health can play into. Thank you again for the wonderful comments! - 💜 Alyssa
@Toms Jose I am so sorry to hear of your many health complications. It sounds like your doctors have excellent reasons for their suggestions for your treatment path. It is also wonderful that you have been able to find skilled doctors who are willing to help you improve your health. I wish you the best of luck with resolving your gastrointestinal symptoms! - 💜 Alyssa
I have idiopathic Gastroparesis and seen 3 gastroenterologists and had to wait a year for my diagnosis.
Diagnostic delays are (in my opinion) something that really needs to change. I am so sorry to hear that you had to suffer that long before even getting an answer, but I am glad you found one! Persistence really is everything. I hope you are doing well now!! 💜 - Alyssa
What other chronically adjacent things should I react to/comment on?
I also think the fact that I’m black and now pale has hindered my diagnosis
What is the problem with laproscopy?
It is not so much that there is a problem with the laparoscopic procedure, but that it does not consistently resolve the MALS in every patient, and the trend seems to be that an open surgery has a higher and longer success rate, so many physicians are leaning towards only doing the open surgery. I'm not sure there is a clear answer to why, but it might have something to do with visualization and maneuverability differences between lap and open surgeries. I hope that makes sense if not, let me know and I will try to explain it again! Hugs! 💜 Alyssa
What kind of doctor diagnoses this - is it a vascular doctor?
Did your POTS resolve with MALS surgery? Is the bruit a steady flow sound or intermittent with your pulse?
My POTS improved, but did not resolve with my MALS surgeries. The bruit is intermittent with the pulse. It sounds like a large whoosh that corresponds with your pulse. I hope that helps answer your questions! 💜 Alyssa
Alyssa Layne Thanks. I can hear a steady turbulence sound that disappears instantly when she inhales and returns on exhale. Nothing that is intermittent though, I understand that only about 50% will have the bruit, but I was hoping to hear it. Official testing next week. Fingers crossed for a diagnosis. If she’s diagnosed, they do laparoscopic surgery. I’d hate for it to fail, but I’d also hate to have a full scar if not needed. Decisions decisions. But you said you were glad you tried the more minimal approach of laproscopy first, so that’s something. These doctors said they’ve had very good results with laproscopy and I followed a doctor in another state who said their results with laproscopy were impressive too. I guess it’s worth a shot, like you said, to try this approach first. I’m putting the cart before the horse though, we need a diagnosis first. I’ll be shocked if they say she doesn’t have it. They said her history and symptoms were textbook for MALS. I appreciate your posts.
That sounds like it could be a MALS bruit to me! I also hope you get a diagnosis soon, just having a name to put with the experience of being sick is unbelievably satisfying and does wonders for the emotional toll of being sick. I think a conservative approach is fair, and I am still happy with our thought process and decision to start with a laparoscopic surgery! And it is successful for many people who never need a follow up surgery. Also, there is nothing wrong with looking ahead to surgery, especially if her case is as textbook as it sounds! My mom had an amazing intuition about my health, and when I had MALS, she was convinced that it was my answer as soon as she read about it for the first time on the internet. I hope you all gets some answers and relief soon! Let me know how the testing goes and of course, if you have any further questions, I am happy to answer them! Lots of hugs 💜 Alyssa
which surgery did you go thru ...lap. or open procedure?
Hi Kerri!! I've had both procedures. My first surgery was a lap procedure in 2017, I relapsed in 2018 and had my second surgery (open) in 2019, so far the open is working well for me, but only time will tell if it is a permanent solution or not. I have been working on a video all about both of my surgeries which will hopefully be out soon, but I am more than happy to answer any questions you might have! Hugs 💜 - Alyssa