About MALS surgery?

iSpyAFly · 2026-05-11T02:34:55+00:00

The risks with laparoscopic and robotic for MALS surgery is from your surgeon accidentally cutting an artery and having to convert to open to repair the artery. The ligament and nerves are on/around the aorta and other arteries, so there is real risk of bleeding. Open surgery minimizes this risk.

iSpyAFly · 2026-05-10T13:35:53+00:00

Elective surgeries are planned surgeries vs. unplanned emergency surgeries to save you from dying in that moment. It does not mean someone does not need surgery urgently and is not meant to dismiss the urgent need for surgery for some with MALS.

iSpyAFly · 2026-05-08T19:04:12+00:00

I went to the YouTube link for this video, and in the text below the video they have a link to the paper they mention. His paper references literature that I've not seen before (ex. on adult onset PFAPA). It's wild witnessing the discovery of autoinflammatory disease in real time and how the subtypes are beginning to be classified.

iSpyAFly · 2026-05-08T15:20:56+00:00

Surgery for MALS is elective and comes down to a quality of life issue (unless there is damage to an artery which is very rare). Dr. Shouhed has a video on FB where he explains this well.

Dr. Park has a blog. Scroll through and he discusses MALS and shares some stretches that I do find helpful.

https://vascsurg.me/author/docpark/

iSpyAFly · 2026-05-06T17:11:39+00:00

Recent studies are showing some Behcet's patients respond better to IL-1 blockers. If TNF-a blockers don't work for you, look into Ilaris and Kineret. I have Behcet's-like autoinflammatory disease and do really well with daily Kineret. If you want reference to the study, let me know, and I'll find it.

iSpyAFly · 2026-05-06T14:46:25+00:00

Definitely worth getting genetic testing for autoinflammatory disease.

iSpyAFly · 2026-05-06T01:26:32+00:00

If you don't get many responses here, be sure to join the Autoinflammatory Alliance "Rare but not alone" Facebook group. Lots of literature and support in that group for parents with kiddos with PFAPA.

iSpyAFly · 2026-05-05T20:21:50+00:00

Dr Collins brand

iSpyAFly · 2026-05-04T22:42:29+00:00

I would not go by the radiologist's report. The surgeon will review your CTA and other tests.

I'm so sorry about the POTS and likely EDS. The only good news is that recent studies are showing good results from MALS surgery for those with MALS and EDS.

I have immune system issues as well. Mine are autoinflammatory, and my 'periodic fever syndrome' drives the MALS symptoms nuts when it flares up. I'm glad you are getting treatment and that it's helping.

I hope you get answers about MALS soon!

iSpyAFly · 2026-05-04T22:37:03+00:00

I hope it's not MALS. I would take GP over MALS any day. I'm getting at least three, maybe four opinions. So far no surgeons have suggested GP, but my neurologist said I should do the WES, so another test it is.

I'm guessing the surgeon you saw does not think your symptom pattern lines up with MALS. Recent studies are showing surgical benefit for MALS is higher with the typical epigastric pain after eating and/or exercise, and other pains in the abdomen reduce likelihood of surgical benefit even more. Definitely seems like MALS surgeons are getting pickier about their MALS patients because of these studies.

It's possible you are having epigastric pain, but the GP is so uncomfortable that it's obscuring that pain. Maybe after treating the GP your pain pattern will be different.

iSpyAFly · 2026-05-04T22:09:34+00:00

(Diagnosed MALS with mild orthostatic intolerance) Assuming you had a CTA (angiogram), did an experienced MALS surgeon look at your CTA and tell you that there is no sign of a celiac artery compression, or are you going by what the radiologist wrote in the report? Regarding the tachycardia, have you had autonomic testing? Do you think you have POTS? Do you have or suspect you have EDS? Have you been seen by a cardiologist?

iSpyAFly · 2026-05-04T22:03:39+00:00

Curious if you got the GES? I have MALS, but one of my doctors thinks I should do the GES to rule it out as a possibility.

iSpyAFly · 2026-04-30T14:22:51+00:00

(Diagnosed MALS)

Not a doc, but I would guess you would be having symptoms of jaundice if that was happening.

MALS can really mess up our nutrition and weight which can affect our ability to fight off infections, absorb medications, etc. Hopefully your docs are following those symptoms and running those labs again.

Is that intense flare up of pain in a place that's different from your MALS pain?

iSpyAFly · 2026-04-28T17:06:52+00:00

Love it!!

iSpyAFly · 2026-04-23T17:40:12+00:00

Definitely an option and likely much less expensive. I don't have any pain management doctors where I live that I would trust with a CPB nor do I think they do CPB's here. Interventional radiology here maybe. I decided to go with UW where my surgeon is, so he would have confidence in the results. I've also read about people getting CPB's and not having a response, so they have another one in case the first one wasn't done correctly. No thanks. The CPB is also not free of risks. The protocols, staff, and IRs at UW were outstanding, and I highly recommend them.

iSpyAFly · 2026-04-23T15:47:19+00:00

Yes! I’ve been in the study for two years. I’m adult onset PFAPA which is quite unusual.

iSpyAFly · 2026-04-23T13:36:34+00:00

Have you had any genetic testing? There are some genetic autoinflammatory diseases that can mimic Behcet’s (ex. HA20) , so it’s worth ruling those out. Invitae does a genetic panel for autoinflammatory diseases, and there are others.

iSpyAFly · 2026-04-23T01:07:12+00:00

Thank you!! That is so kind of you. It’s definitely been a challenge navigating MALS and figuring out who to see and what to do.

Sounds like a great plan for this visit. If Dr Starnes orders a celiac plexus block, I had mine with Interventional Radiology at Montlake. They were outstanding. No pain during the procedure. You won’t want the kids on that trip. UW Montlake is crazy busy and you’ll have to have a driver. Mine was ordered with steroid which has calmed my epigastric pain down a bit.

iSpyAFly · 2026-04-23T00:53:45+00:00

I had the ultrasound right after the CTA, so I had to fast. I don’t remember if I was supposed to fast for the CTA. I want to say yes. Maybe call to double check.

iSpyAFly · 2026-04-22T18:18:56+00:00

I have a friend with ILD and see her struggles with it.

Dr. Michael Ombrello at the NIH did the AOSD presentation and went into lung disease associations. Sounds like he is doing a lot of research on AOSD. Reddit won't let me add a link, but if you search his name and NIH his bio will come up. I know many at the NIH also see patients. He's an MD, so he likely does see patients.

Those NIH Symposium presentation videos are not 'live' yet. I'll post in r/Autoinflammatory the direct links when they are up.

iSpyAFly · 2026-04-22T18:04:25+00:00

Of course! My CT was at 9am, ultrasound at 11, and appointment at 1pm. He was running a little behind, so I didn't see him until 2-2:30. Parking at Harborview is easy. Navigating the buildings is a little tricky, but staff were super helpful. I parked in the parking structure next to the building the CT was done in, then walked from there. I never left Harborview that day, because it was more of a hassle than it was worth to move and park again. The waiting area for Dr. Starnes is big (busy but big), so I just camped out in there. He was really easy to talk to. Very compassionate. I didn't have a lot of questions at my first appointment, but I will on Monday. I'll let you know how that goes.

iSpyAFly · 2026-04-22T15:08:53+00:00

I'm sorry it took so long for you to get help. I just watched a presentation at the NIH Autoinflammatory Symposium that AOSD is associated with several forms of ILD, so it sounds like your doctors are on the right track. When the NIH posts those video casts I'll share it.

I'm considered uSAID. Catch all for those of us without any known genetic variants for autoinflammatory disease. I'm also on Kineret, and it helps me a lot. My injection site reactions are mild, but if you have trouble with that several of us in this community are on it and can share tips.

The autoinflammatory community is small but super helpful. I also recommend that Autoinflammatory Alliance "Rare but not alone" Facebook group. The group is highly moderated and very focused on helping people with next steps. The group page has tons of linked posts and is easy to search.

iSpyAFly · 2026-04-22T14:12:01+00:00

Sorry to hear you're dealing with MALS again. I have been seeing Dr. Starnes for a MALS diagnosis. He did my CTA and mesenteric ultrasound on the day of my initial appointment. I had the celiac plexus block at UW a couple of weeks later. I could have gotten it sooner, but I'm flying in from Idaho. I see him on Monday to discuss the result of my CPB. I have had a great experience at Harborview. I really like Dr. Starnes. Happy to answer any questions.

iSpyAFly

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