That’s crazy that your nerve block was so bad and that you were put under general! Mine was done completely awake and I was just given some Ativan and it was okay for me, hurt a ton when they hit my nerves. After five minutes I had no pain at all. I’m having surgery Friday along with removing my gallbladder and putting in a Gtube. I’ll be under a spinal epidural initially too. Glad to hear that you’re doing so much better now! Thank you for sharing your experience and may you continue to thrive!
So glad you got help. My daughter is having the nerve block done on thursday. She has been in the hospital for 4 months this admission. 7 months this year for gastroparesis. We have been asking for the nerve block for over a year so hope it will help her.
Jackiea Dallas I am so sorry to hear that she’s not doing well, but I’m so glad she’s finally getting the block done! I’m sure she’ll be on the road to recovery in no time. I’ll be praying for her and your family as well!
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.
Thank you for sharing this, brave girl :) On Wednesday I hope to get the diagnosis MALS too, when I am going to visit my doctor. My Gastroparesis is getting worse and worse, day by day. I think maybe it can be MALS too. You are such a beautiful girl, even with this scar! It makes you a warrior :) Really enjoyed the video! Greetings from Germany and sorry about the terrible english :D
This sounds like me haha. Im having testing to see if I have mals tuesday. I havent eaten a meal in over two years but had periods of remission before that. I recently had my gallbladder out that was causing some of my problem(p.s I had the same peeing issue lol). But my pain is all epigastric up and it hurts to even touch the surface. Nausea and belching which was always passed off as acid reflux and isnt (also chronic constipation). I was fairly hopeless until I discovered mals...and I am onward to testing. How would you describe the pain from mals?
Thank you for your story glad you Re better! Our son has very similar symptoms How do you spell Dr Shoe? I see David Kloth but trouble finding dr shoe online
I feel like a totally different person now being almost 2 years post op. The surgery seriously changed my life. The recovery is hard but so so worth it!
My doctors are pretty sure that I have MALS (I had a CT scan) but are gonna give me the nerve block I think to make sure and have discussed open surgery with me. How long is an open surgery do you know?
I’m not sure if you’re talking about the surgery length or recovery so I’ll tell you my understanding of both. I’m having an open MALS repair Friday along with the removal of my gallbladder and the placement of my Gtube. My surgery will be 4-5 hours long. Recovery can be 6 months total. Hope you get some answers!
I am diagnosed with MALS also. I’m hoping I get the surgery to help me. I have a 15 month old and I’m constant pain to even hold him for more than 5 minutes at a time. I need your help and have questions!!!❣️💛
ali hazim I don’t actually know of any doctors other than the one who performed my surgery, Dr. Hsu. He’s in Connecticut. I know that there’s hardly any doctors that know how to do the surgery correctly so I’m not sure who there is near you that could do it 🙁
last week I got diagnosed wiht Mals, May thurner and Nutcracker syndrome. I am really hoping to get the surgery soon! I have a weird question tho... I run alooot to the toilet because of my issues ahahah so the thing I am most nervous about is going to the toilet after the surgey hahah how was that? :P Did your doctor tell you why he wanted to take open surgery vs lap surgery? Here in norway they most likely do lap, but i have heard that open surgery is the best? Here they dont even do the nerve block thing, so I am really unsure if I want to do the surgery here... I even had to go to germany to find a doctor that was able to figure out what was wrong, so I dont know if I want to take the surgery here.
Jaime Padilla yeah this is true for most of us. MALS is a diagnosis of exclusion so usually many of us are tested for things such as what you suggested plus much much more before we ever get to a MALS diagnosis.
You say you’re having trouble with anesthetic you had pots syndrome. You should get checked for Ehlers-Danlos EDS and EDS hypermobile syndrome by a geneticist they co-occur a lot
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This girl is so strong. Like dang 🙌🏼 Praise God for his faithfulness.
Elena Castillo You’re the best
That’s crazy that your nerve block was so bad and that you were put under general! Mine was done completely awake and I was just given some Ativan and it was okay for me, hurt a ton when they hit my nerves. After five minutes I had no pain at all. I’m having surgery Friday along with removing my gallbladder and putting in a Gtube. I’ll be under a spinal epidural initially too. Glad to hear that you’re doing so much better now! Thank you for sharing your experience and may you continue to thrive!
So glad you got help. My daughter is having the nerve block done on thursday. She has been in the hospital for 4 months this admission. 7 months this year for gastroparesis. We have been asking for the nerve block for over a year so hope it will help her.
Jackiea Dallas I am so sorry to hear that she’s not doing well, but I’m so glad she’s finally getting the block done! I’m sure she’ll be on the road to recovery in no time. I’ll be praying for her and your family as well!
how . long does the block take
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.
Thank you for sharing this, brave girl :) On Wednesday I hope to get the diagnosis MALS too, when I am going to visit my doctor. My Gastroparesis is getting worse and worse, day by day. I think maybe it can be MALS too.
You are such a beautiful girl, even with this scar! It makes you a warrior :) Really enjoyed the video! Greetings from Germany and sorry about the terrible english :D
Don't go for surgery do ayurvedic treatment like panchkarma
Have your nerves been addressed? Did your surgeon cut whole coeliac ganglion or how?
This sounds like me haha. Im having testing to see if I have mals tuesday. I havent eaten a meal in over two years but had periods of remission before that. I recently had my gallbladder out that was causing some of my problem(p.s I had the same peeing issue lol). But my pain is all epigastric up and it hurts to even touch the surface. Nausea and belching which was always passed off as acid reflux and isnt (also chronic constipation). I was fairly hopeless until I discovered mals...and I am onward to testing.
How would you describe the pain from mals?
Thank you for your story glad you Re better! Our son has very similar symptoms
How do you spell Dr Shoe?
I see David Kloth but trouble finding dr shoe online
David Robin It’s spelled Dr. Hsu!
I would love to know how you are feeling now! My daughter is possibly facing this surgery.
I feel like a totally different person now being almost 2 years post op. The surgery seriously changed my life. The recovery is hard but so so worth it!
I’m seeing Dr. Hsu tomorrow 9/19. Wondering how walking was for you right after your surgery. What are the restrictions?
I HAD THAT TOO
My doctors are pretty sure that I have MALS (I had a CT scan) but are gonna give me the nerve block I think to make sure and have discussed open surgery with me. How long is an open surgery do you know?
I’m not sure if you’re talking about the surgery length or recovery so I’ll tell you my understanding of both. I’m having an open MALS repair Friday along with the removal of my gallbladder and the placement of my Gtube. My surgery will be 4-5 hours long. Recovery can be 6 months total. Hope you get some answers!
I am diagnosed with MALS also. I’m hoping I get the surgery to help me. I have a 15 month old and I’m constant pain to even hold him for more than 5 minutes at a time. I need your help and have questions!!!❣️💛
Im Ali from Iraq and i diagnosed with MALS i need your help
ali hazim Hey! How can I help? :)
@@kaylaabigail7767 which doctor is good?
ali hazim I don’t actually know of any doctors other than the one who performed my surgery, Dr. Hsu. He’s in Connecticut. I know that there’s hardly any doctors that know how to do the surgery correctly so I’m not sure who there is near you that could do it 🙁
I contact@@kaylaabigail7767 with husu he promised me to reply in my email but no response till now do you have Facebook?
صديقي اني من العراق واعتقد عندي نفس الحالة منو شخص حالتك بالعراق بلة زحمة عليك
GOD BLESS
last week I got diagnosed wiht Mals, May thurner and Nutcracker syndrome. I am really hoping to get the surgery soon! I have a weird question tho... I run alooot to the toilet because of my issues ahahah so the thing I am most nervous about is going to the toilet after the surgey hahah how was that? :P Did your doctor tell you why he wanted to take open surgery vs lap surgery? Here in norway they most likely do lap, but i have heard that open surgery is the best? Here they dont even do the nerve block thing, so I am really unsure if I want to do the surgery here... I even had to go to germany to find a doctor that was able to figure out what was wrong, so I dont know if I want to take the surgery here.
Very good!
How are you , I just got diagnosed with this
I have mals too the plexus block didnt work for me either
did you still get surgery ?
what did ur pain feel like? like mines sharp and where was it located!?
Did you have terrible pain in the upper middle of your stomach down to your belly button?
Did the surgery cure your gastroparesis?
Did your docs ever leaning towards a diagnosis of IBD, Crohn's, etc.?
Jaime Padilla yeah this is true for most of us. MALS is a diagnosis of exclusion so usually many of us are tested for things such as what you suggested plus much much more before we ever get to a MALS diagnosis.
They told me ibs but in fact it was MALS ! I’m seeing Dr Hsu as well 💞
You say you’re having trouble with anesthetic you had pots syndrome. You should get checked for Ehlers-Danlos EDS and EDS hypermobile syndrome by a geneticist they co-occur a lot
I sent you a message on your photography page
Did you have a hard heart beat from this?