@pianoplayer Welcome to our group I am happy you have found us. What a dedicated daughter you have, to be able to play piano at her level is quite an achievement. She has determination and that will serve her well in coping with this diagnosis. Yes there are risks to mitigate and making the decision to opt with surgical intervention is a difficult one. May I ask the age of your daughter? I agree with your doctor that consulting with other specialties first is the path to go, as you want to make sure all diagnosis and options are exhausted before you consider the surgery. I know the pain she is suffering is unbearable to watch, is she able to eat small meals or lost any weight? Both Cleveland Clinic and Mayo Clinic have excellent physicians that treat MALS so I know she will be in good hands. Please feel free to ask questions we have a great group of people here with lots of experience, we may not always have an answer but we are able to share our experiences with you.

Pardon my redundancy in the following:
We celebrated Emily’s 21st birthday last week. Tomorrow we will be seeing a surgeon with capability in performing robotic celiac artery release surgery versus the initial vascular surgeon who diagnosed Emily with MALS who prefers laparoscopic surgery. Emily will also be seeing an Infectious disease specialist and a Gastrologist in a few days.

Two weeks Before her MALS diagnosis , Emily was diagnosed with Lyme’s Disease, and given Doxycycline, an antibiotic that resulted in Emily having migraine and abdominal pain. The doctor immediately put her on amoxicillin a generic antibiotic. The migraines stopped however the abdominal pain continued and led to a trip to the hospital emergency clinic, Emily’s Doctor prescribed a CT scan, which revealed celiac artery compression. We have a cousin who I found has MALS; however, Emily’s vascular surgeon said there is no data supporting hereditary disposition to MALS

I am concerned with the number of patients on the Mayo Clinic Forum who have had MALS symptoms return after surgery; even when the initial procedure included release the celiac artery, removal of ganglion nerve, and an angiogram detecting no compression of the celiac artery.

Yesterday I spoke to a person who had laparoscopic surgery releasing the celiac artery she said the ganglion nerve was not removed. She now feels fine after over two years of sudden attacks, which would result with her in a hospital emergency clinic, yet for two years there was no diagnosis of MALS until recently. Emily’s symptoms are different with constant chest pain around the solar plexus and abdominal pain after eating. Emily has had a CT scan two years ago when she had an appendectomy which when recently reviewed showed necking of the celiac artery. She recently had a CT and an angiogram, which showed the Celiac Artery compression. Emily has not had a Plexus blocker, which may relieve pain but would not cure the problem.

Should a Plexus Block be done before surgery. Should a celiac artery release procedure include a removal of the ganglion nerve “just for good measure”? If Emily were to have surgery to release the celiac artery, I want to be sure all that all necessary procedures are complete and thorough, which may include removal of the ganglion nerve bundle, yet I am sure the patients and their surgeons who have had symptoms return initially felt the same. I also question pros and cons about Laparoscopic versus Robotic surgery and also choosing a vascular surgeon specializing in celiac artery release surgery of MALS, versus a highly qualified surgeon in vascular surgery with high honors in his field with experience but not specializing in performing celiac artery release surgery.

@pianoplayer your concerns are valid. I will say I have had surgery twice, and you will see that the people posting are what I consider "Chronic MALS" patients; however, we do not hear from the patients that have had great success from procedures but I do know they exist. It is uncommon to be chronic. Additionally, in my humble opinion, MALS pain is multifaceted. The cause of the pain is not fully understood, I believe there is a vascular component, a nerve component and an anatomy component. The ganglion tissue alone (nerve component) is so complex- it is thought to be the second brain the body. I have had ganglion tissue removed, which was helpful for awhile ...3 years to be precise and the next surgery they injected me with steroids to calm down the nerves. I have also had 2 blocks. I have heard that many vascular surgeons recommended blocks prior to surgery as it has been an indicator if the surgery will be a success. Emily is still young, so her chances of surgery being successful are greater in my opinion. My first surgery I was in my 40's and my artery just could not open up like it should (arteries are flexible...however like a garden hose, kink it for 40 years and it will be difficult to get the kink out). Hope that makes some sense and helps you??

Yesterday we saw a Gastrologist who is prescribing testing for stomach emptying and another related test. Today we saw an Infectious Disease Specialist who said we can likely dismiss Lyme's disease but Emily has had another blood test to be certain Lyme's disease is not present. This afternoon I contacted Mayo Clinic in Rochester, MN and have registered Emily. Tomorrow August 2nd I will be contacting the Vascular Surgery department at Mayo for a consultation. The Vascular Surgeon who removed Emily's appendix is a candidate for performing Emily's surgery which looks more and more likely will occur at Mayo or in Waukesha WI. I want to consider all options make sure Emily is in good hands.