The big update
So it’s been slightly over a month, been keeping my head low and just focusing on the recovery. I’ve been thinking about this update and how I will construct it. Few reasons why; I want people that have been touched or follow my journey to have a healthy understanding of the process and the condition. “Manage expectations”
While this has raised awareness of two issues, the failures of the VA system and awareness of Median Arcuate Ligament Syndrome, -specifically neurogenic- I want to focus more on the surgery and recovery side of things. I have learned so much about a condition I’ve struggled with and thought I knew intimately.
The surgeon -Dr Richard Hsu- made sure we knew everything before we made this leap and his staff, specifically his PA -Dr Tim Stuart- continue to help us learn and understand. I want to pass that knowledge along. Hoping it will serve as a few things, a better perspective of my battle and battles to come. So people can understand that I didn’t make a deal with one devil to turn around and sell it to the next. And, that there is a larger issue, a lack of knowledge and acceptance in the medical field among medical professionals.
I’m also guessing you want to know, did it work? Did the surgery take away the pain when I eat?
“Stick, Meet the carrot…”
I’m just pulling your chain, not everyone following want to read my long drawn out explanations and just want to know “did it work?” Well, it worked. It worked perfectly. I am, for the first time in 10 years, free of pain after eating. (haven’t ran any races, climbed any mountains or played any sports following my open cardiovascular surgery, but I’m assuming I’m also pain free following strenuous activity, I’m slacking I know)
Just like all my writing, and teaching in general helps me cope, understand and gain perspective on my own struggles while also granting that same perspective for outsiders looking in or the many future patients considering this major operation. Well for me, this has already been worth it. But, that is without saying recovery has taken me to knew lows but this time with hope. Instead of going down looking at no end, when I am going down its with hope, restitution and looking up. I aim to spell out what I mean by that.
Going into the surgery, Dr Hsu spent as much time as we needed to fully understand what lies ahead. He walked us through my CT scans frame by frame explaining what and where everything is. To fully grasp the condition and situation.
Median Arcuate Ligament Syndrome in many cases can be lived with. In my case, that wasnt possible. I was flirting with malnutrition, physical and psychological abnormalities and it was effecting my life absolutely and without question or pause.
The surgery, under Dr Hsu has a 92% success rate. He aims to improve on that relentlessly and I’m confident he will, in time. He explains to me that its a big surgery, its a hard recovery and there is always chance for failure, albeit small, it has to be understood. He is very blunt, very concise and very professional. Exactly the way I wish all my doctors where, it contrives and produces conversation. Look, I’m nervous about a surgery that is high risk, near my heart and messing with nerves that control countless intricate things all throughout my body. That bluntness and confidence agitates that nervousness to question, going into a surgery with all your questions satisfied-well, you go in confident and eager.
Doubt will always be there, its when it becomes and obstacle vs a complication. Obstacle is something you can overcome, a complication is something that alters your story.
Dr Hsu explains the process of the surgery; Mid line incision, we have to move the pancreas and the stomach, understand that risk. Then cut back the Ligament all the way to its origin so even if it tries to regrow, it cannot complete the task or ever compress anything again. He then assesses the solar plexus (celiac plexus) and remove all the inflamed nerves.
He said out of all his 280+ surgeries he has yet to have someone that met all 3 criteria (low diaphragm on ct, pain on eating/early satiety and discomfort from exterior pressure on site) that didn’t have visually enlarged and irritated nerves. He explains the resection is done by feel and he only cuts back the same nerves on every patient. It’s not “tailor made.” He explains that this is 9 years of surgeries getting to this point and this is the best results.
Of course my doubt crept in when he starts saying he’s “never seen” and “92%” I start thinking well if its gonna start with someone…it’ll be me. I seem to find those rare things and slide in there and make room for 1. I ask what if he doesn’t see nerve inflammation? He leaned back with old man style confidence with looking above me and into his imagination and said “well I guess I would close up and leave it at that.” Then reiterates he’s never seen that happen.
What to expect in recovery
We move on to talking about recovery. Everyone is different. Most people lose some weight before they gain following any major surgery. The body works extra hard fixing the damage. First month for most is the worst, it peaks on week 1 and 2 when your leaving the hospital and also arriving home.
The 1-3 month mark takes a turn to much different difficulties as the steroid injected to the surrounding nerves to help with inflammation wears off and you begin to really feel the body relearn life post chronic illness. Those nerves and ganglion don’t enjoy the limelight and stardom as their needy Nelly cousin the “celiac plexus.” They also now need to pick up the slack that is now missing since the renovation. This whole process can take 6 months to a year. To me, at that moment, recovery is all back seat business. It’ll be a mountain to climb once I cross this bridge or the river Styx.
I was pretty focused on just getting the surgery. I heard “it’ll suck at 1 week, 2 week, 1 month and then for a while” and that handy dandy emotional wall started to come up. The one that I have no control over but that keeps you level headed and calm during chaos. Well at home it happens to me when I’m surprised, good or bad surprised and under a lot of stress. So I knew what was happening, but it took all the fear, all the doubt, all the worry and made like the wind with them. I was very okay with it.
The night before the surgery, stoic and ready to get this done with I wrote my back up plan if this all went to shit. I wrote my farewells and hopes and dreams for my family if I weren’t going to make it. I set a electronic reminder to have it email the note a few days after the surgery. This is all easier when the emotional barrier is up, but I hoped it would never see the light of day or my wifes and daughters eyes. But, you have to be prepared. I mean I had a mission outline for my daughters birth, with 5 paragraph Operation order, contingencies and the route and alternate routes laid out. The hospital was a 1 minute drive away… She is just finding out about the note as she is reading this. 😉
But that was my mindset, numb, stoic, freaking ready for the next step and for fate to do what it will.
The surgery and Hospital stay
They spread you out like Jesus on the cross on the operation table, big ol’ straps around the arms and legs. I could imagine Dexter walking in but if it were to happen well, fate. And then lights out.
I remember waking up with fire inside me, not the work out with a sick play list “lets get this done” fire. But as if I were stabbed with a spike by a giant troll and didn’t have Frodo’s (Bilbo’s) Mithril armor. Like someone left napalm in there and a million knives, but it was quickly remedied by the medication. This is where things get malleable as the medication effects my memory of the finer details in the first few days.
The normal hospital stay time post surgery is 5-7 days. I had a small recovery complication and ended staying 9 days. My body, not having any protein or anything on me had a hard time absorbing water (the IV fluids). So that water went to wherever gravity took it. My feet, my low back and my testicles…Thus began the Hospital legend of the man known as “Testiclease”, Roamer of hallways, conqueror of hospital food and iron testicles the size of grapefruit. He feared nothing, except gravity itself.
With no exaggeration, seriously my balls were the size of 2 Grapefruit. It hurt, and the one thing I had to do was walk for recovery of the surgery. Which really hurt. Then all the doctors, their doctors in training and nurses on my floor had to check on the oversize prize jewels of the 10th floor, daily. You just have to go with the punches and laugh. Of all people, it’d be me. Once the legend of Testiclease sailed off, and the jewels got to at least a manageable size, I was cleared.
How I feel now, like shit. But it is all normal. Remember, I started after 10 years of suffering vs the average 2 years most diagnosis take, it’ll take a little longer to get over the hump. Everyone is different and there are phases to this recovery. To fully grasp everything I’m about to list ill walk you through all the things involved.
My abdominal wall muscles all have their day of attention, spasms, tightness, burning. That’s the 6 pack, the 2 major muscles underneath that muscle that make up the abdominal wall. Having a long mid line incision separating those muscles creates quite the arena of pain. Walking used to be a chore, its much better now. Muscles heal faster than the other things involved. The first 3-4 weeks the major pain was those muscles and the incision sensitivity. It still flares up every now and again but its getting better. It feels like the muscles are constantly shrinking and its worse in the morning or big movements or weight. Some days it feels like I haven’t slept for 72 hours and did an ab workout the whole time, serious exhaustion. When the muscles fire or spasm it hits you like a wet sock in the face, it really sucks. While it can hit some super high pain scales I feel like mentally its much more manageable pain. Still cant lift any significant weight or do a sit up unassisted.
This helps to see the different layers of muscle involved in a mid-line incision.
Zone 1 in this image is the mid-line
The next thing is the mesenteric inflammation; when it first hit me after the hospital, it was triggered by the smell of butter being warmed up… I’ve never, ever in my life had a beef with butter but my body thought I was dying.
My body, being through a traumatic event and suddenly realizing its missing nerves that were chronic…it starts a chain reaction of “what the hell is going on” throughout the body. The brain just hits the “2319 panic” button and believes its poisoned. Full on drenched in sweat burning up, then shivering cold, massive nausea, feel like I have the Bubonic plague. Last a whole 15-20 minutes and its gone. Each time since that first one it gets less dramatic. No lens flares or orchestral background music. Happens mostly if I over eat. When I mean over eat its not the same as finishing the plate and getting seconds, my stomach is not very big now and will take a while to adjust.
After Dr Hsu opens the Abdominal wall, he has to move both the stomach and the pancreas. (this is just removing the stomach and you can see the pancreas behind it)
With the Stomach and Pancreas out of the way you can see the Celiac Trunk and Ganglion. I removed everything to show you clearly the area of operation. The Median Arcuate Ligament in this program is normal, its apart of the Diaphragm. In a MALS patient that upside down ‘U’ would be on top of the Celiac branch there. The Yellow in this is Nerves and Plexus.
To get an idea of the operation.
Constipation and diarrhea, how bout both at the same time? My kidneys feel like their getting crushed on some days or my lower gut feels constipated even though its not. This is the inflammation and relearning the body is going through. Passing stool requires abdominal muscles and well they’re on strike, so every time I do…well lets say its an ordeal.
How ’bout me being hot? No not bodacious, but feeling like I’m sweating my ass off. Then cold? How bout a racing heart beat? Eh where ever the wind is blowing on that particular day. On my 1 month check up I had a incredibly low blood pressure and very high heart rate at 96.8 degree temp… the next day I was burning up with a low heart rate. Again, that the body relearning that regulation. Before the surgery I was always cold, always. Now I have the window open 24/7 no mater that its close to freezing. On top of that its normal for you body to uptick your metabolism to speed up the healing process after major trauma.
The Vagus nerve that branches off to the Celiac ganglion (solar plexus) and all the other sympathetic nerves has a hand in body temperature, blood pressure, pain, and other signals that all control how your entire gastrointestinal system works and when its messed with for good or bad it has to adjust. This adjustment is the longest part of the recovery.
Rough idea of Ganglion, observe how interconnected everything is.
All my organs and nerves are relearning how to operate without chronic pain and inflammation from one plexus all while making new connections on how to regulate the unregulated. This can take 6 months to a year or longer and I think is the worst of the recovery. Nausea will come in waves during this time.
Finally we have the mental side of things. Now I knew, especially because of the amount of time it took to diagnose me that my brain had faltered to the negative feedback I received from years of chronic pain. I mean at some point I wouldn’t get hungry or feel the need to eat. Well that is food aversion my brain learned from years of pain and torture. It is common in MALS patients. That doesn’t just go away. The pain is gone but that food aversion is something that I don’t even think about, but its there.
First thought would probably be “if you can finally eat pain free in 10 years why aren’t you eating anything and everything?!” well add all those symptoms up; muscle pain, burning, pulling, spasms, sweating, shivering, constipation or diarrhea, nausea and wacky blood pressures PLUS I hardly ever feel hungry or want to eat….even though I want to eat. Not very appetizing.
And if I do? My stomach rivals that of a tadpoles. We have pie eating contest on the daily me and the local Tads’.
So while I enjoy the pain free portion of eating, its still a hard battle. Lots of small meals. Sometimes I do feel hungry and enjoy eating more quantity then ever but it comes in waves as I retrain myself.
Even then, some days random types of food increase my gut discomfort with more activity or gas, like the worst gas you’ve ever seen. I could eat steak one day and be fine, then 2-3 days later have another steak made identical and it feels like ill float off from all the gas my small intestines are creating and add to the global warming crisis. Its just part of the mesinteric inflammation recovery process.
So there will be weeks I’ll be feeling like I’m improving, ever so slowly and there be a week that I’ll feel like I’m getting worse. Its all part of the ebb and flow of the recovery process. The problem is fixed, now I just have to recover. All the listed issues I am having? They will all go away with time. Something new for me. Also for those wondering, I’m up from 109 to 114lbs.
One thing I want to cover before we go, when you look up MALS, Celiac axis, ect you get images like a strip of ligament hooking over the artery. What it mostly doesn’t show is the nerve plexus and that the Ligament is apart of the Diaphragm Crus.
Like these examples. Some show the nerve and some don’t, but for illustrative ease its just a small strip. Seeing it as apart of the diaphragm and with the importance of the nerves it adds much more to the medical understanding to new individuals. There are doctors out there that believe MALS doesn’t exist and there are doctors out there that believe its only a blood flow issue and it could never be a nerve issue. I don’t think the Name MALS is helping, if anything there should be an accepted sub category Nurogenic-MALS.
GIF showing where the MAL is located on the diaphragm. Way more to the picture. This is what a normal Diaphragm and MAL would look like.
So, I’m recovering slowly, I can eat and I’m not out of the woods yet. Thanks to everybody that has shown support and made this happen. I will continue to use humor, dark humor and the like to lighten the struggle. Please, no need to say your sorry when I joke. I am getting a lot of sorry’s from people lately and it dampens the mood. Just pass the laughs and continue being awesome. I’ll continue to write and update people when energy permits. It has been pretty difficult with the medications I’m on. They make me as bright as a walnut after sunset and pretty tired. Thanks again for all of your support and tenacity to follow this journey this far.
Real quick edit at 6:29pm*
Here is the scar! forgot to add a picture of it.